tag:blogger.com,1999:blog-13792786896686301842024-03-14T12:35:30.715+00:00There's Always Rheum for ImprovementRheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.comBlogger119125tag:blogger.com,1999:blog-1379278689668630184.post-69182232590509808992016-01-19T21:12:00.001+00:002016-01-19T21:12:25.883+00:00Fight Club<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Let me start by saying I wish I didn't have to
write what I am about to say. I have been fighting my condition for nearly 8
years now and during that time I have lost many battles. Many of you know that
having a long term condition is a daily fight and struggle between your mind
and your body. You fight pain, fatigue, low mood, lack of understanding, lack
of sleep and fear of the future to name just a few. But when other battles are
thrown into that mix it can make things so much harder to cope with.<o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> Protests and
negative statements are made about our UK government on a daily basis about a number
of issues facing society. One of the most important issues, which have been a
topic of discussion for some time, is the so called welfare reforms that are
supposed to make those on benefits be better off in work. Our conservative
government want a better society where people earn their keep, I get that. In
fact I agree that there appear to be many individuals who are living off the
state when they are more than capable of working and contributing to society. I
also understand that it is often not that simple to just ‘get a job’ and there
are many barriers people have to overcome. Circumstances are different for
everyone but when it comes to living with a long term condition, staying in
work is not simple. A condition that presents new challenges with your health
daily mean finding a job or keeping employment where your employer both
understands and supports you is incredibly difficult.<o:p></o:p></span></div>
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<br /></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> The past few
weeks I have discovered the truth of the matter behind the theory that you are better
off in work. The truth is, for me and many others, you are <i>not</i> better off. Not at all, in any way. And this won’t be the case until
better financial and all round support is provided to those that are being put
on shuttle buses off to the job centre. <o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> I have
always wanted to work. I have ambitions and determination like most people my
age. I have suffered huge set-backs in my career due to an illness I did not
ask for. I didn't want to take time out of work. I was forced to by my deteriorating condition
and a period of severe ill health. At my worst, I was claiming benefits,
because I had to leave my job, my condition was out of control and I no income
at all. I lived alone where rent and bills had to be paid. I didn't want to
'scrounge' off the state but it was my only option without a partner. I don't
have rich parents or a wealthy family. I
don't have savings and at the time I had nothing but debt from my time at
university. I was supposed to be starting a career that was supposed to justify
what I had spent on my degree. By the way, I paid my own way through university
with part time jobs and student loans. I
had no help from the state or wealthy parents to pay my fees but I didn't
qualify for reduced fees either. My career was intended to make all that hard
work worth it. But it was only a year after university that disaster struck and
my life changed forever.<o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> I vowed to
get back to that career someday, convincing myself that once treatment was
found everything would be OK and would go back to normal. It's now 8 years on
and so much has happened. I have two artificial hips, an artificial shoulder
(and soon another one to match). I ran my own business for 4 years because I
had little confidence in being employed with a condition that varies day to day
and would require a lot of time off. I became my own boss so I didn't have to
worry about the restraints of my condition and letting people down. I worked
through two huge operations to have my hips replaced and several types of aggressive
treatments. I bettered myself by slowly regaining strength, confidence and finding
treatments that worked for me. This took time but I finally came to a place
where I felt able to work again and that I could have control back of my life. <o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> In November
2014 I started a new career. A fresh start that, despite my degree and
experience of work, sent me back to the beginning. I wanted to work for our
health service because I felt it would be giving back for some of the amazing
support I received from them over the years. I was more than happy to learn new
skills and work my way up because I worked with some fantastic people and I
felt fully supported as an employee. Then my shoulder became a problem. All of
a sudden I was struck down again and unable to work waiting for my operation to
replace my shoulder. It was a set-back but didn't deter me, I just felt
incredibly guilty for letting others down. As soon as I could, I returned to
work and even celebrated a move up the ranks last year gaining more valuable
experience. <o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> Then it
became all too much again. I wrote previously about the fact working full time
was having a severe negative impact not only on my health but on my life in
general. The exhaustion and pain on top of a full working day was a battle I
could no longer fight. I gave it one hundred percent and was incredibly
reluctant to admit defeat but, for my wellbeing and happiness, I made the
decision to reduce my working hours. This was an incredibly stressful time and
a difficult decision, not only because of my emotional distress at the thought
of my condition beating me, but financially I had to prepare myself. I
obviously did my research, there are plenty of things out there that tell you
working even a few hours is better than nothing and you will be supported by
your government. They tell you that you will be better off in work and rewarded
for your contribution to society. As I mentioned earlier, sadly this isn't
true. <o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> I am
fighting a new battle with my local council housing department and The Department
for Work and Pensions, amongst others, for some help and support to simply top
up my income due to the loss of income now I have reduced my working hours.
Again, this was not my choice or hope for the future. I want to work. I want to
work full time and earn my own wage and be able to live a normal life. I want
to be able to save for the future and perhaps buy a house someday, but it's
becoming increasingly apparent that this may just be a distant dream. <o:p></o:p></span></div>
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<span style="background: white; color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> After months
of letters, phone calls, submitting evidence of every part of my life (the
council especially have access to my bank accounts, payslips, medical records etc.)
I was told last week that I am pretty much entitled to nothing. Even though my
income has decreased substantially, I fall a few pounds above the threshold
that is set out by government for entitlement to help with housing costs. To
put it into perspective, I now take home less than £1000 per month and my rent
alone equals 75% of that. Whilst I receive personal independence payments, this
is mostly spent on my car costs each month because the government decided I
wasn't entitled to a mobility vehicle at one point. I had to lease a car
instead to be able to continue to travel to work, I live in a small town with
very little public transport and I need my independence in the form of
transport to be able to attend the hundreds of medical appointments I have per
year alone. On top of the lease payments I have to pay insurance, repair costs,
MOT etc and this is not cheap. However, if I had been awarded my PIP mobility
element from the start, I wouldn't have these payments to make each month. Late
last year I finally won my battle against the DWP where a high court judge
decided their decision not to grant me mobility payments was unjust and wrong.
Despite winning my case, I was in a difficult financial position still because
of being tied into a lease for the car I now have after my Motability car was
taken away. <o:p></o:p></span></div>
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<span style="color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> In all honesty, I was better off
completely out of work and claiming benefits. I am in a worse off financial
position now than when I couldn't work at all. The council won't help me. The
DWP won't take my complaints seriously, when all I ask is for help to recover
the costs for the car I had to lease when they forced me into a corner
following their bad judgement. Everything I have coming in goes straight back
out and our government do not care one bit about this. <o:p></o:p></span></div>
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<span style="color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> They have gone back on their word
to support people who want to work and contribute to society. It is perfectly
obvious to me why people remain on benefits, why should they work when they are
better off not doing so? But what about those who want to do something with
their lives? Where is our incentive or support when our income only just falls
over your threshold so you aren't required to help?<o:p></o:p></span></div>
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<span style="color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> I don't expect everything to be handed to me.
I have worked hard pretty much all my life apart from a period of severe ill
health. I started work at the age of just 13 in a local hairdressers. I don't
expect lots of money to come to me for nothing each month. I, like so many
others, just need that additional bit of support to bridge that gap between
part time work pay and full time which I can no longer do because of a genuine
health reason. It's made me consider going back to full time just so I don't
have to deal with all this and worry about money. The stress on top of my
health issues is overwhelming and not something that will help my illness at
all. I know it would be unsafe and a hindrance to my employers if I went back
to full time because I struggle even working 25 hours a week. I have to sleep
every afternoon following work just to regain some energy. I am constantly
exhausted and I fear what would happen if I continued down that path and pushed
myself to the limit. <o:p></o:p></span></div>
<br />
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<span style="color: #212121; font-family: "Segoe UI","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> The worst thing is... Our
government and local council do not care. They have their targets and their
thresholds and tell us everything will be OK when it isn't. It's so far from OK
when someone like me is put into this position. I have seriously hit a low
point in my mental health this week because of all this but at least I have
people around me who care very much about my wellbeing and offer me support. I
fear for those who don't have this because having financial worries on top of
health issues is just not right or fair. What is happening to society that
those who want to try and make something of their lives are doomed to succeed from
the start because of cut backs and lack of support? Where is the support from
the government when we need it most? I will continue to fight as long as I am
able, but I fear this is a battle I don’t have the strength to win.<o:p></o:p></span></div>
Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-36885086893002247862015-12-20T18:12:00.001+00:002015-12-20T18:12:29.171+00:00That Time of Year...<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">On my good days, it's a lot easier to stay positive and remember how fortunate I am in many ways to have a loving, supportive family and group of friends. I try to stay positive as much as I can as the alternative brings much sorrow and self pity. </span><br />
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
I had a few of these dark days last week. A period of time where my mind spiralled out of control into a place I hate where nothing seems fair or good. The Christmas period is always hard for some people and if you have RA you can relate to trying to fit in all those parties, family gatherings and festivities around a disease that doesn't allow for planning and requires a lot of rest. People often ask me if my condition is worse in the winter, and for some perhaps the cold weather is an additional burden on the joints but for me that isn't really the case. The winter months bring dark days and longer nights and that is the worst part for me, constantly feeling tired and groggy is bad enough without it getting dark at 4 o clock. Christmas, however, should bring some light and joy into that equation of dark days and tired bodies. </div>
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This year I haven't really got into the Christmas spirit as yet. Don't get me wrong, I'm no grinch and I usually love this time of year. I look forward to the excitement, the twinkly lights, cozy nights by the fire and time spent with my loved ones. However, this year I lost someone very dear to me and the family and without my grandad around this Christmas it just doesn't feel right. I miss him dearly and I suppose I took it for granted that he would always be with us. Celebrating Christmas this year will be difficult without him, he was the life and soul of our family and I hope he would know how much he would be missed. He will very much be in my thoughts during this time. </div>
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Finding it hard without him is another reason I am struggling at the moment and makes me sad on those dark days. I have had a few flare ups especially in my knee which is making things difficult and ive suffered with tonsilitis a couple of times so generally I have been feeling quite rotten and run down. I have done my best to carry on and fight it, hoping that my bad days have fallen pre Christmas this year so I can enjoy time with my family. But on those bad days, where it is hard to do anything but lie in bed and try to wait it out, it becomes difficult to see the good in anything. Your mind wanders from feeling hard done by to questioning your very existence and feeling you haven't achieved anything in life. The mental battle with RA is often as tough as the physical. I have been questioning myself this week because of the lack of activity I have been doing, when you can't do anything it's hard to do anything else but think... And overthink. Some thoughts that came to my head this week were 'what have I actually achieved in life? I'm 29 and because of having to take time out of work I haven't got anywhere in my career, I haven't the income to plan for the future or own a home, I am a burden to my family and friends sometimes, I let people down...' Blah blah. These negative thoughts start to dissipate or morph into more positive actions when I start to feel a little better. Rather than thinking of my career for instance in a negative way I will start to see the achievements I've made to continue working through this, the fact I ran my own business for a while etc. when you are down its often hard to see the silver lining, no matter what encouragement or support you get. It's only when you truly believe in yourself that things start to seem a little brighter. This Christmas I aim to shut out those dark thoughts as much as possible and concentrate on the things I can be so thankful for. Whilst I am deeply saddened by loss this year, I can be thankful for the good times I had and appreciate many people are not so fortunate. When things seem so bad you cannot escape I have learned to take some time, be patient, get some rest and tomorrow will be that little bit brighter and better. I wish you all a healthy and happy Christmas and hope you get to spend time with your loved ones and celebrate all the good things in your life.</div>
Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-54791933054893378802015-11-11T16:38:00.001+00:002015-11-11T16:38:20.363+00:00Stress and Strawberry Milkshake<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">The black hole that appeared around me a few weeks ago just seems to be getting bigger. In my previous post I explained that after much deliberation I felt it time I had to take a step back from working full time and reduce my hours which has actually been accepted now by my employers, however the rigmarole around this seems to be never ending an a ridiculous bunch of policies, procedures and politics. It took nearly two weeks for my request of hours to be dropped due to my struggle with my condition and that is subject to a review from occupational health. </span><br />
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No that sounds pretty simple right? Wrong. My occupational health review has been confirmed to take place in December. It's only 2nd week of November. I was told that I can only return to work prior to the occupational health review under my existing full time hours contract. My doctors have agreed that I have pushed myself too far and agree that I should only be doing part time right now and I have to agree that I don't think I'm capable of doing full time hours. I feel I'm being pushed into a corner to be honest. To top it off today I received a call stating that because I previously had time off sick this year (following my shoulder replacement I had time off to recover post surgery) I have reached my limit of sick pay for this year and will not be paid for the time off I have had recently. Again, I'm backed into a corner as I now feel I have to return to work for financial reasons rather than actually being ready. I am unsure what to do at the moment, I feel very isolated and my choices are limited. If I remain off work I won't be paid. If I go back I'm not sure how well</div>
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I'll cope. I also feel that they haven't fully supported my request for fewer hours but have had to accept due to legal ramifications rather than concern for my health and I now worry about the attitude towards me when I do return to work. It's actually made me very stressed out, at a time where I have been signed off by a doctor anyway and should be resting and I'm receiving calls and emails from work almost daily to update me on my fate. I just have a gut feeling this isn't right. I was then told today, after the call informing me I wasn't being paid for time off, that occupational health will now agree to me returning to work on part time hours until my review only if a doctor states that I am fit to work with these conditions. That has just emphasised the pressure to go back to ensure I have some money coming in but who knows what they will say at this review? Are they trying to get rid of me? I'm starting to fear that I am more of a hindrance than a help and I'm sure that's not right. These feelings are subjective and it could easily be denied that it was my employers intention to cause any stress or worry at a time of ill health. Cherry on the cake is the stress over the past couple of days has triggered yet more illness. I developed a really sore throat and a visit to my GP (again... I swear I should be paying rent there) today confirmed its tonsillitis. I just thought it would be easier than this, that I would be fully supported and encouraged to come back when I am fit and ready and be welcomed by my colleagues in doing so. I don't feel welcomed whatsoever, more like forced back into a team that is only following the rules rather than actually valuing me as an employee. I have worked very hard all my life, been a valued member of every team and I could not feel more worthless at this point. I'm fed up. Sick and tired of being sick and tired more to the point. I always try and be positive in my approach to things but there are some days where I just feel enough is enough and want to hide away until things get better. The best thing about today? A cool strawberry milkshake to soothe my throat which my sister bought me. Life isn't all that bad.</div>
Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-87225667486260048672015-10-27T20:42:00.001+00:002015-10-27T20:42:30.091+00:00Choose Life<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">I have been struggling a lot for the past few weeks. I don't like to admit it, not even to myself because to me it seems like failure. I have experienced extreme tiredness, aches and pains all over my body, blurred vision and dizzy spells, loss of appetite some days and a few infections. I've been trying very hard to hold it all together and carry on as normal but with each day it just gets harder. The exhaustion is the worst thing, I struggle to concentrate at work, find I cannot get through the day without a nap and just constantly want to lie down.</span><br />
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I've been trying to consider the reasons why this is happening, ive been to the doctor for some tests also. Every day is a challenge at the moment and I am struggling to live my life. I don't feel like doing anything outside of work, it's hard enough to get through the day without collapsing is how I really feel. The thing that keeps coming back to me that I really haven't wanted to face is that maybe I just cannot cope with full time work anymore. I want so desperately to be able to work as normal and be able to do all the other things around work. I want so desperately to not give up and accept that this disease has given me limitations but the longer I try the worse it is becoming. I am becoming anxious, drinking way to much caffeine to combat the tiredness and nothing really works.</div>
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I have had to try and make some decisions to benefit my health and my future as its gettin out of control, I just don't feel able to do anything anymore. The only conclusion I can come to is that I need to step back on the working hours I do, so I intend to speak to my employers about the possibility of shorter working hours and working from home a bit more because the long days at the moment are killing me. I honestly didn't want it to come to this, and as I said, I feel like a complete failure for not being able to achieve something so ridiculous like a full day at work but I have to listen to my body now before it starts to ruin my whole life. I think that I could achieve a better work/life balance if I didn't work long hours and suffer for that around it. I don't want to have to go to bed everyday after work, spend every weekend exhausted not in the mood to do anything and be upset every day because I feel like I'm failing and too tired to fight. This is no quality of life.</div>
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I'm sharing this with you because I know that some of you may be feeling the same way, battling with yourselves over remaining independant and thinking you are a failure for not being able to work. It's been very important to me to remain independant, and continue working because I didn't want this life. I wanted to achieve so much in my career but I don't know how I am going to do that by pushing myself so far it's detrimental to my health.</div>
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Anxious about what my employers will say, I am struggling to sleep also. I really hope that I will get the support that I need and be able to continue with my job but of course I fear the worst. I fear they will think I am not cut out to do the job if I am not there full time. This isn't true, as I work bloody hard and I know I can do a great job whatever hours I do, but there's always that feeling they may not understand and see things in a very black and white way. Either I can do the job I set out to do or not. I have considered this of course, and hope it won't come to it but if it does then I will hopefully find something that is supportive and matches my ability. My career shouldn't have to be affected by my condition in an ideal world but I know many that have had to give up work altogether because their bodies just aren't allowing them the freedom to be employed. I am NOT giving up, I won't. But I just need to make some changes to ensure I can remain in work as long as possible and have the work/life balance I need. I will of course let you know how it goes with my employers and here's hoping I get the result I need to make things a bit easier. I am truly very lucky to have amazing people around me that support me no matter what and that has made all the difference in my battle.</div>
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So, I want to leave you with a message I got from my partner today that truly made me feel better about things and I hope it will resonate with some of you who are struggling with decisions about work and life in general...</div>
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'You're the bravest person I've ever met, it's one of the (many) reasons I love you so much. You're never beaten. Just go easy on yourself and stop worrying about letting everyone down. Everyone that matters only cares about your quality of life and your health, not your job, what you choose to do with your time or anything else'</div>
Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-53302769326943436812015-10-08T20:36:00.002+01:002015-10-08T20:36:42.931+01:00Secret Battles<div class="MsoNormal">
I’ve been thinking about this post for a while. In fact,
probably since the day I was diagnosed, I have wanted to share these thoughts
with you. If you read my posts regularly then you’re probably aware that I tend
to focus on the frustrations of living with RA and trying to make my negative experiences
into positive ones. However, I feel the need to share this post in support of
all the people who suffer with long term illness, be it RA or something else
you know you will be carrying with you for your entire life.<o:p></o:p></div>
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Now, many who know me will agree that I am not the most
tactful of people when it comes to saying the right thing. I am not gifted, like
some I know, in being able to always say something constructive or make others
feel better no matter what the situation. We’ve all been there, where a friend
or loved one has just shared some bad news or is having a rough time for
whatever reason. There comes this wave of pressure over you prompting you to
say something that will take the pain away. The truth is, there isn’t really
anything one can say to make it all better. The only thing one can do is offer
their support and comfort and the most comforting thing in times of need is
<i>just knowing someone is there for you.</i><o:p></o:p></div>
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However, throughout the past few years living with RA, I have
noticed a few less than comforting questions or responses that can really be
frustrating, and even upsetting. I don’t expect the world to know what I am
going through, or the ins and outs of my disease. I would like to think that
when I was diagnosed and shared the news with my loved ones that they perhaps
wanted to do their own research into my disease to get a sense of what I am
dealing with, if they didn’t feel comfortable asking me personally, I mean. I have
nothing to hide from my friends and family, and I am even happy to share my
experiences with those I don’t know if it means providing a little comfort to
someone. What <i>is</i> frustrating is having to explain yourself every time you feel
a bit rough or down and having to teach others again and again
about what RA means. Living with RA is hard, <i>very</i> hard. There is so much physical and emotional pain to deal with <u>every single day</u>. It doesn't go away. It's considered in everything you do and, as such, life choices are <i>very</i> difficult and much more complex.</div>
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I am not sure if this is down to the whole ‘you don’t look
sick’ fiasco, where because you look reasonably normal or healthy everyone
presumes you have been cured and are then confused or skeptical if you mention you are not well the following day. The upsetting thing is feeling like people don't believe you. If you knew the
smallest amount about RA then you would know it doesn’t discriminate. It doesn’t
plan out its reign of terror according to your calendar. It doesn’t intentionally
set out to mean you can’t attend a special event or hang out with friends (although sometimes I
do wonder about this…). <u>RA is unpredictable.</u> One day you can feel OK and cope
very well with little pain and just a few hours later you may experience crippling pain
and have a knee the size of your head (true story for me this week). It just
happens. I am sure I have said this over and over again but I wonder if anyone
is listening sometimes when I am faced with the same old questions.<o:p></o:p></div>
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Here’s just one example…<o:p></o:p></div>
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I tell someone ‘I’m having a bit of a flare up and
struggling at the mo’<o:p></o:p></div>
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Responses… ‘Oh, how come?’ ‘What’s brought that on?’<o:p></o:p></div>
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<br /></div>
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Well, if I knew that then I’d be a rich woman and I would know how to prevent flares wouldn't I? As above, RA just <i>does</i>. I don’t know why it happens, I
don’t do anything to ‘bring it on’ and to be honest I don’t know how to respond
to this question without wanting to scream or cry sometimes. The solution to this could be to
talk with your loved ones and explain that questions of this type are
frustrating and upsetting to you. Explain that as someone battling a crippling
disease every waking minute of every day it’s only adding to the fight when you
feel those you love most just don’t understand, and more importantly don’t seem
to want to understand. A quick Internet search will share with you the basics
of RA in just a few minutes and explain to you even a little of what living with RA means. I know for certain that if a loved one
came to me and, God forbid, shared news of a diagnosis I knew nothing about, the
first thing I would do is try and find out about it to help my understanding and be more confident in talking to my friend about it.<o:p></o:p></div>
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<i>Get well soon</i>. Another well intended wish from a loved one
that can come as a huge blow to someone who has a long term condition. Whist
well intentioned and a lovely gesture to bestow on someone, it’s simply not
going to happen to someone with an auto immune disease, and many other
diseases. You won’t get well soon, you will never be ‘well’ as such, there are
just good days and bad. It may seem pedantic but It’s <i>so</i> important to someone
who is living with this fight every day that they feel comforted by those they
love, that they feel a level of mutual understanding. The same applies if a
friend is having a problem, whatever it may be. I am sure they would want you
to comfort them in their time of need and not have to explain the ins and outs
of ‘why’ something has happened. Does it
really matter <i>how</i> or <i>why</i> something has happened? Surely the point is how that
something has made you feel and what support you need to get through it. Most of the
time a simple, ‘<i>I am here for you</i>’ is all you need, and I am luckily to get
this response more often than not from my loved ones which is of great comfort to me. <o:p></o:p></div>
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If I can share one piece of advice to anyone reading this it’s
to develop an understanding of your loved ones lives. This goes for anything,
whether it be to find out a little more about the job they do, or perhaps they have
a family member who is sick and it would help them to talk about it? Perhaps they want a child and are struggling to
conceive? Or perhaps they have a medical condition you know nothing about? We’d all be a little bit closer and have more respect for each other if people
were more this way inclined. I vow to take my own advice here and hope to find out a little more about the people in my life and their secret battles. <o:p></o:p></div>
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Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-48380821305954701052015-10-08T19:24:00.004+01:002015-10-08T19:24:48.210+01:00Clocking Off<div style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px; line-height: 21.3px;">
Life's pretty crazy at the moment. Ever since my shoulder replacement surgery (which eventually happened in June) I don't really know where the time has gone. I'm happy to say that my surgery was a success, and has made a massive positive difference in my life. For the first time in years I can actually use my right arm without feeling like I want to cut it off due to the pain. I can brush my hair again. I can was my hair again without too much difficulty. That's an amazing feeling (especially for a female). I can't believe the difference and I can honestly say I can't wait to have the other done! Fingers crossed this will happen early next year as the doctors don't really like to do the surgeries within 6 months of each other. I am now sporting two artificial hips and an artificial shoulder with another one on the way and all before my 30th birthday. Not many can say that, and I feel lucky to have been given the chance to have a slightly better quality of life. </div>
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Following my surgery I was offered a great new job opportunity, actually working within clinical trials (an area of huge interest to me, obviously) and although a full time job is tough, <i>really</i> tough some days, I am enjoying the feeling of living an independent life and being a contributing member of society. Living on benefits has never been an aspiration of mine, I should imagine that stands for the majority of society. Not that there is anything wrong with it because I had to have the support for a while and appreciated every penny that helped me whilst unable to work. I just hated the feeling that as a young person I should have been out there working. Every day that slipped by whilst I physically couldn't work were days where I wasn't building the future I wanted, earning the self respect I craved and gaining a sense of achievement. I felt useless and a detriment to everyone, and there was pretty much nothing I could do about it until my body decided to play ball.</div>
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I hated those days, so empty and miserable. </div>
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I have been working hard, probably too hard most days, and this is taking its toll. I don't want people to think it's easy to commit to full time work with such a debilitating disease because it's not, far from it. I still have bad days, in fact this week I am having a series of them. My right leg has decided to swell up to the size of a tree trunk and I'm dragging it around like a dead weight. All I can do it get though the days at work and then try to stay off it in the evenings. This doesn't create a great work life balance, if I want to work sometimes I have to pay the price and suffer the consequences of pushing my body to its limits. This means sacrificing my social life and everyday activities outside of work until things get better, which sucks (to put it mildly). But I hate letting people down and I've committed to a job and will be there unless I absolutely can't do it. They are supportive in letting me work from home on the odd occasion, like the other day where I physically couldn't get out of bed. This is really important and a massive support to me because it means I don't have to let people down if it's a mobility issue, and I urge those of you who are struggling to really seek out the support your workplace can offer of its a job that can be done remotely. </div>
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There are some days when the alarm goes off at 6, I've had barely any sleep due to pain or discomfort and I think to myself what the hell was I thinking? I can't do this. Then I take it one step at a time and drag my ass into work and slowly the day gets easier and I feel a sense of achievement.</div>
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There are other days where the fatigue and exhaustion take over and I honestly don't know how I push past it. That feeling where I just want to lie down or slump in my swivel chair and sleep. But I get through it, by munching away on high energy foods, and caffeine! I don't think many people realise that my daily routine incorporates a minimum half hour nap, I just can't get through the day without it. It makes all the difference in being able to stay awake past <a href="https://www.blogger.com/null" style="cursor: pointer; font-weight: inherit; line-height: 21.3px;" target="_blank">7.30pm</a> if I have a proper rest and sleep after work. I then get a few extra hours of energy to be able to do things in the evening with my friends and family (I'm still nodding off by <a href="https://www.blogger.com/null" style="cursor: pointer; font-weight: inherit; line-height: 21.3px;" target="_blank">9.30pm</a> most evenings but better than falling asleep in my dinner!)</div>
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I don't say these things for sympathy, it's simply an honest account to raise awareness of this awful disease to those who see me and think I must be OK, or the famous 'you don't look sick'. I've made it pretty clear in my posts that just because someone looks like they have it together on the outside, you have no idea what is happening on the inside. I tell y<span style="line-height: 21.3px;">ou these stories in hope that someone suffering the same fate as me may realise they can do it. They can have whatever life they chose with RA if they are willing to compromise and do things slightly differently. It's never going to be perfect and I'm never going to be 'better' but I can make it work. Don't deny your body what it needs.</span></div>
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Anyway back to my 'tree trunk' leg... I need an ice pack, STAT.</div>
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Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-15985313955414904152015-06-24T18:35:00.002+01:002015-06-24T18:35:12.645+01:00My Hero...<br />
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<span style="color: #444444;">I believe all of us are brave. I heard an interesting point of view once, I can't remember where but it has stuck with me. It went along the lines of...</span></div>
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<span style="color: #444444;">Every day we go about our business as usual. All that time, we all know that the things we love, the people we love, at any time can be taken away from us. We live knowing this and yet we carry on...</span></div>
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<span style="color: #444444;">These past few weeks however, I have not felt brave, I don't really know how to carry on. Someone very dear to me has been taken away and I attempt to recover from my third joint replacement.</span></div>
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<span style="color: #444444;"><br style="line-height: 21.2999992370605px;" /></span></div>
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<span style="color: #444444;">My <span style="line-height: 21.2999992370605px;">Grandad was my hero. He has always been there in every family memory of my childhood and adult life. He was an amazing person, strong, full of life and so courageous and kind. I have never met anyone with his sense of generosity or adoration for his family. He would have truly done anything for my family, and only ever wanted to see us happy and healthy. He is the kind of rare gentleman that you don't often see these days. I was lucky enough to have spent a lot of time with my grandparents throughout my life, and I am so privileged to have had that gift of time with my Grandad. Not many people get to know their grandparents and I can't imagine growing up without them. </span></span></div>
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<span style="color: #444444;">My Grandad showed me what it was to appreciate life, to work hard for what you have and value your family. He taught me how to be kind and supportive of others, whatever it was they wanted to do or achieve. He always supported my ambitions especially when starting a business and he showed such pride in me even when I was at my lowest. He helped me in so many ways following my diagnosis and through my darkest and most painful days he comforted me. He assured me it would all be OK in the end and that he was proud of me.</span></div>
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<span style="color: #444444;">He was a hero to me and my family because of his bravery throughout life to always strive to provide for his family and make us all happy. There must have been times he needed rest or wanted to relax but I never remember him doing so. Every minute was spent making things better for everyone else around him, even in his final hours.</span></div>
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<span style="color: #444444;">Grandad was diagnosed with a brain tumour 3 and a half years ago, devastating news to us all. He spent those three and a half years fighting, dealing with so much and he was an inspiration to us all. Even through that his main concern was everyone around him and that his family were happy and healthy. </span></div>
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<span style="color: #444444;">As I recover from my successful shoulder replacement, I think about him a lot. I think I must be strong, I must go on and I must fight as it's what he would have wanted. I'm sure he'd want me to be well and happy and I can only continue to fight this disease to do him that honour. Despite my set backs I will strive to have the life I wanted, to achieve the things I set out to do (even if it takes me a little longer). I will be brave again soon and each day a little bit of fight comes back to me. </span></div>
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<span style="color: #444444;"><br style="line-height: 21.2999992370605px;" /></span></div>
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<span style="color: #444444;">For you Grandad, miss you every day. </span></div>
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<span style="color: #444444;">Ps. I promise to write soon about my surgery which will hopefully help some of you out there suffering at present.</span></div>
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Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-66276665810382144232015-04-18T20:12:00.000+01:002015-04-18T20:12:19.305+01:00StrangersYears have passed since my last post, and for that I can only apologise and hope that I haven't left readers short of further answers to a life with RA being less complicated and painful. In truth, life took over for a while. It seemed I needed more experience of living this life with RA before I could continue to write about it. So much has happened since my last note, both positive and negative experiences. Rheumatoid Arthritis has received mentions in the news and perhaps people have become more aware of the disease. But you can never be fully aware of anything until you experience it yourself, right?<br />
I am now 28 years old, its six years to the month that I was diagnosed with RA. That time now seems so long ago and almost a different life. Most of the time during the early stages of my disease are a blur. A very real blur of emotions and pain and change, but a blur nonetheless.<br />
It would probably be helpful for those of you in those early stages of RA to hear from me that six years on I am miraculously recovered and living the dream, but this sadly isn't the reality. Whilst I have dealt with my pain, grown with it and began life on a different path, a full recovery is not the case and I am sure if you know enough about the disease you understand there is no miracle cure. Living with RA is not necessarily about a cure, just attempts of finding the treatments and tweaks to your lifestyle that help you manage it. I believe that in the six years since my diagnosis I have slowly stumbled across things that have helped me, and made life a little easier. The main thing that I believe truly helps you cope with this dreadful disease is understanding. That means having the understanding from the people around you of what you are dealing with. I don't expect my family and friends to fully understand, and they probably never will. I still find it frustrating, even now, having to explain why I might not be myself one day or why I don't feel so great. Sometimes it takes all my patience and strength to not scream at people 'I am living with a debilitating and painful disease that has not been cured since the last time I saw you!' But then I remember, those people around you don't know what it is like and it's not their fault they don't get it. Perhaps I should explain a bit more when I am having a 'bad day' but that in itself is painful and time consuming and would probably bore them. I bore myself sometimes with the explanations i prepare when someone asks 'How are you?' because in my head the answer is often 'I feel awful, exhausted and low because I haven't slept for days properly, my body is aching, my joints are clicking and grinding when I move, I am struggling to concentrate with the pain killers i have taken...' etc etc.<br />
Communicating how you feel is not an easy task for anyone, but when you have a disease you are battling long term, its even more difficult. I mean, how do you put into words 'arghpghffffjzsbsk' cause that's the only expression that comes to mind sometimes. It's a kind of non feeling that a word hasn't been identified for yet. It's beyond tired, beyond pained, beyond fatigued. And only those who are on this RA journey will understand that.<br />
I can say that at this point in my life, I am very lucky. I have a wonderful support base from my boyfriend who is remarkable at making me feel happy even at the worst of times. He too understands what it is to live with pain due to his own battles with a condition affecting his body and maybe that's what makes this relationship work. We can both appreciate each others 'bad' days, cheer each other up and ultimately understand each other without having to explain. He knows when I am low, knows how to help (through nights where only a hot bath at 3am will ease me to rest or an afternoon nap may interrupt a day out) but it leaves me comforted and happy that I don't have to feel anxious in saying I need some help or a rest. He knows that I would, and have, done the same for him when needed. I am not saying that everyone suffering with RA or a disease should be with someone who suffers the same, but it makes all the difference if your partner is understanding of it and doesn't pressure you to do things you cannot or don't feel up to.<br />
So where am I now? I am in a good place. After trying my hand at running a business for a few years, which I will tell you about some other time, I now am back working in a full time job with an employer that supports my condition (again another great way of coping with my disease is having that support, that people at work know I have limits and are kind to me and understanding of 'bad' days). Being part of the team at work has done wonders for my confidence and I feel like I have a purpose in life. Whilst some times are hard, and yes I do struggle and get tired, waking up and knowing you matter and are needed somewhere is preferable to waking up on benefits with very little to keep you going in life.<br />
I have had both hips replaced, a few years ago so I may have already told you this, but currently I am three weeks away from my next surgery. Yes, ladies and gents, I will have a new shoulder to match the new hips in a short while! Its been a long time coming I think, I have had pain in my right shoulder for a while but it has worsened (and worsened) over time to the point now this is my only option. Everything else has been tried and tested to prevent a replacement (which has risks of course) but I am of the belief, as I was when my hips were replaced, that why hold out till I am older for fear of the unknown whilst I could have a better quality of life now? Now is my time, now I am still young and able to enjoy the things I might not be able to in years to come. I don't want to miss out on any more of life.<br />
With my upcoming surgery and recovery time I am sure I will be with you again soon. Stay happy and keep pushing for understanding from those around you and life will seem a little easier.Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-79790835788206731892012-08-13T18:28:00.001+01:002012-08-13T18:28:15.137+01:00Cheers To ThatSo another year has passed in the life of Rheuma Girl. I suppose at least this year despite the ups and downs, I have something more to show for my nearly 26 years. I cant believe this journey started 4 years ago. So much has changed from that point. But in the past year I have at least established myself as a businesswoman (that sounds really weird!). I have ran with my ideas, and turned them into reality through hard work and determination. I want to look back on my life and not just be the girl with that disease or that condition that people take pity on. I want to be acknowledged for the type of person I am and what I have achieved. I think running a business at 25 is quite an achievement anyway.<br />
Considering this year started pretty badly, I have once again picked myself up, dusted myself off and carried on regardless. I didnt anticipate being alone this year, but to be honest I have never felt more lonely than right now throughout everything. As much as I appreciate my family and good friends who have showed support, I cant help but feel left behind a little. I think its the challenge of going about day to day life, being proud or excited about things and not having anyone to share it with. I am so happy for friends who have grown up, found solid relationships and are looking to the future but at 26, my future still feels so far away. I cant help but wonder about having a family and getting in a serious relationship. I always thought I would have most of that covered by now. As a young girl, 26 always seemed so old! I figured I would have at least settled down, but things change, people come and go and you start to cross out all of the people that shouldnt really be in your life. Which ultimately means youre left with the good ones that will always be there.<br />
What am I hoping for this year? Well, I know it cannot be forced but I would like to think I may find someone special enough to start thinking about a future with. Maybe I have already met them but not realised yet? I would also like to think my business will become more established, and continue to be enjoyable and realistic in terms of my lifestyle. At the moment I can manage but with help. So here's to being 26... and to the anticipation of something great to come this year.Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-57353342657003236402012-06-08T21:35:00.002+01:002012-06-08T21:35:52.858+01:00Come Aboard The Yacht of Life<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
So here we go again. Tomorrow I face the daunting task of
sitting in a chair for around 8 hours whilst I’m pumped full of drugs and poked
at. Yep you guessed it, its Rituximab infusion number 5. I cannot say I am looking
forward to it, did you guess? This time especially because of work. I didn’t have
to worry so much about side effects when I had treatment previously because it didn’t
matter if I felt like crap for a couple of days or weeks even. I had nothing to
do anyway. This time it’s different. I have a job to do, a business to run, so feeling
horrendous and having time off isn’t an option. I have allowed myself two days
to recover(ish) as realistically I know I won’t be able to get up the day after
an 8 hour infusion and do a full day on my feet... it just isn’t going to
happen (and that ‘s not being negative, just sensible). On my second day off, I
do need to get into some sort of gear and do bits of work from home and fetch
supplies etc so it won’t leave much time for lounging around. <span style="mso-spacerun: yes;"> </span>I am sure that other people do just fine...
right? I know I wasn’t quite right for a while after my last infusion but I can’t
say how I will feel returning to work because I’ve never had to do it before.</div>
<div class="MsoNormal">
Anyway, the thought of it scares me a bit. Because I have
put myself in the situation where I <i style="mso-bidi-font-style: normal;">have </i>to
be ok. As you all know, the unpredictability of RA means you can never say
anything for sure when it comes to how you will feel. It’s really frustrating
trying to be prepared for something that you can’t predict. I still have
sleepless nights where I imagine waking up and not being able to move for pain.
The fear of not being able to walk as I try and get out of bed still haunts me,
because I know that it could happen at any time... and there’s not a hell of a
lot I can do about it. Living with RA is like one big wait and see game. You
wish for a good day when you have made plans, but inevitably have a bad one and
then good days can often turn into bad ones... etc etc. </div>
<div class="MsoNormal">
So, back to the point... I just wish I could foresee how
things will go, as I am sure we all do in some way (if you have RA or not). Not
being able to tell the future is a part of life, it’s the same for everyone
(unless you have magical powers, in which case please apply within). But for
some people seeing into the future means different things. Some may wish to
know if they will get the job they long for, get the girl of their dreams or
even just be happy. But for me, the future is only tomorrow. Thinking any
further than that seems near impossible because I just don’t know what this
disease will mean for me in the next few hours, let alone years. This obviously
makes work very hard, and in a business where I have to plan ahead, all I can
hope for is that with enough help I will get through whatever I need to do. I
worry I will push myself too far now I am working again, that I will use the
excuse of having good days to do as much as possible in fear of bad days to
come. But, inevitably doing too much brings about bad days anyway. Sounds
confusing doesn’t it? If you are not living with RA but reading this because of
someone you know who suffers with it or other chronic disease, I bet you didn’t
realise the sheer volume of things we have to consider on a daily basis such as
this. </div>
<div class="MsoNormal">
My mind is a whirlwind of anticipation, eagerness to get
things done whilst I am well, trepidation and sorrow for the things I haven’t and
couldn’t have done since being diagnosed. I am more positive about the future
now, don’t get me wrong, but I can’t help but dread being taken back to that
dark place where I am not in control of my disease again. </div>
<div class="MsoNormal">
Getting used to living a ‘normal’ life is taking its toll at
the moment. When I say normal, I mean being back in the routine of day time
work. I am putting every ounce of myself into it, not leaving room for much
else in the way of a social life. But I knew that was the choice I had to make,
because whether I started my own business or not, any job would have exhausted
me and it’s better to be exhausted doing something you enjoy and love than just
for the sake of it. Some days I do long for when I had no responsibilities
which made bad days a little easier. But then I remember the emptiness of my
life without purpose. The boredom and depression that came with those long, unfilled
days was exhausting in itself. At least when I lie down to sleep at night,
after a long day, I feel a sense of achievement and pride now. I try to ensure
I still make the effort to do things outside of work too, and that will
hopefully be more enjoyable now I have someone a little bit special to share it
with (more details on this soon). I guess it’s all about balance between work,
rest and play. When I have worked out this formula, specific to RA sufferers, I
will let you know, from aboard my yacht... <span style="mso-spacerun: yes;"> </span>as I will undoubtedly be a millionaire who has
cracked the formula to a happy and healthy life for everyone.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-42001659542549691612012-05-26T17:52:00.001+01:002012-05-26T17:52:38.054+01:00Drive By<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="font-family: "Courier New",Courier,monospace; line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-size: 10pt;">I
can't believe it’s been nearly three years since I got my first motability car.
For those of you who don't know what that is, it’s basically like a contract
hire scheme that means the money you get for having a disability doesn't come
to you but instead pays for your car each month. For me, it’s a Godsend. I
couldn't manage without my car; even on good days driving is a struggle let
alone having to haul my ass to the nearest bus and train or whatever involving
walking, carrying stuff, uncomfortable seats etc. Anyway the act of doing
anything is tough when you have a bad day with RA but trying to get yourself
somewhere with no transport is even worse. </span></div>
<div class="MsoNormal" style="font-family: "Courier New",Courier,monospace; line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-size: 10pt;">So
my car has pretty much meant I can have some level of independence, I wouldn't
be able to afford one if it weren't for this scheme and I certainly couldn't
rely on friends and family to taxi me around to work, drs appointments,
hospital appointments and anywhere else I want to go. When I first got sick, I
didn't have a car as I took the bus to work. At the time I had to start asking
my partner to drive me to work as I couldn't bear the painful walk to the bus
and then from the bus to work. It was a frustrating situation for us both and
took its toll. </span></div>
<div class="MsoNormal" style="font-family: "Courier New",Courier,monospace; line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-size: 10pt;">So I
looked into the motability scheme and tried to sort it ASAP so I could regain
some of my independence. I noticed whilst trying out cars the strength in my
wrists, arms and shoulders was deteriorating and has done even more so up to
this day so rather than trying to painfully change gear and mess up my knees
even more with clutch control I went for an automatic car. This was the best
thing I ever did as driving on my worst days is not such an unbearable
experience. Getting in and out of the car is another thing... but can't really
do anything about that other than having some kind of walk on vehicle (wouldn't
that be great?!)<br />
Anyways over the past nearly three years that little car has meant the world to
me. It’s taken me everywhere and been with me on the journey through my first
years with RA. It took me home to my family when I had to leave my 'former'
life behind after my first heartbreak. It’s driven me to appointments where I
was told treatment was unsuccessful and appointments where I was told treatment
seemed to be working. It drove me to my friends when my heart was broken again
after trying to make a relationship work. And it continues to carry me to my
treatment days; with my mum in the driver’s seat on the return journey (driving
after a full day’s infusion and all doped up is not a great idea!)<br />
I love that car for so many reasons and what it represents, but it also
triggers some negativity. For example, I've mentioned before about the infamous
blue badge incidents where I've been shunned by people, shouted at for abusing
the system (as apparently I don't LOOK like I need a blue badge - didn't
realise that to qualify for one you had to look a certain way!) And I suppose
jealousy. The jealousy comes from driving around in a nice car, when some
people think I don't deserve it. I don't deserve to have a decent car if I am
not paying properly for it. </span></div>
<div class="MsoNormal" style="font-family: "Courier New",Courier,monospace; line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-size: 10pt;">But
you see, I am paying, and I am paying in more ways than you can ever imagine or
see. Firstly, I pay a fair chunk of money each month to have the car, yes I PAY
for it. The pain, horrendous fatigue and every other symptom I feel daily is a
high price to pay for something shiny with wheels. Frankly I'd swap you the car
for a wheelbarrow if it meant not living with this disease. It’s one of the
small 'perks' if you can call it that; I prefer to think of it as a 'support',
that comes with having a disease that is disabling. I have two bloody new hips
to show how disabling my disease really is. I have come to think I'd like to
take the following around with me in the car; my medical notes (which now
amount to about a million pages), the x-rays of my ravaged bones and joints, my
two old hip joints nicely preserved in a jar, the wrist splints, walking stick,
knee supports and the stacks of pills and injections and infusion bags and
machines.. Just to prove how much I do qualify for the sodding car and the blue
badge. <span style="mso-spacerun: yes;"> </span>I don't actually think all that
would fit in my car, but it would shut some people up who dared to question why
I parked in a disabled space or why I got to drive round in a shiny car when
I'm broke. Shut it. Just shut it, move on and complain about something else you
don't have. I could sit here and moan all frigging month about the things I
don't have and want, but those things don't include a shiny car, more like a
decent night’s sleep, a day without pain, a knee that's not the size of my
head, my own hips back etc etc (the list goes on but you get the point-they are
not material things, just the basic desires of anyone to be healthy and to be
supported).<br />
So let me tell you jealous individuals who crave to have a car like mine or
wish you could park nearer the supermarket doors... There is so much more to
life you should be wishing for and I am sure if you swapped lives with me for
one single day the car and the handy parking wouldn't make up for the life
changing disease you have gained in return. Just think about that before you
judge people for doing certain things or having certain things, what
consequences do they have to face to have whatever it is they've got? And would
it be worth it? My guess is no. I need to swap my car soon (as you only get it
for 3 years and then have to change it) so I am trying to decide what to get
bearing in mind the adaption’s and support I need from a car (so no a soft top
mini that I can't get in or out of is not an option). <span style="mso-spacerun: yes;"> </span>Whilst I look through the brochures and
others get excited or a bit envious around me I can't help but drift off and
think how the hell did I get here? How did it come down to this deal that the
kind of thing I worked hard towards having all my life like a good job which
meant good wages and the ability to buy my own very nice car now came to a
compromise... A deal where all that hard work means nothing and all I had to do
to get a nice car (but with limited options) is have a horrific, lifelong, incurable
condition that will probably eventually cripple me so the only thing I’ll be
driving is the soft top wheel chair I will be strapped to? Ok, ok so I'm
exaggerating there slightly and making jokes but it’s kinda true. So I intend
to enjoy my hunt for a new car, ignore the envy, and take from life what little
pleasures there are amongst the pain. </span></div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-45659694404248603102012-05-14T22:00:00.001+01:002012-05-14T22:00:57.648+01:00What Makes You So Special?<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
When starting a new relationship, friendship or even
employment, do you tell them about your ‘condition’? The question that keeps
popping up in my mind as many people often write to me and ask for advice on
this. The truth is, I am completely unsure myself. <span style="mso-spacerun: yes;"> </span>It’s something that shouldn’t put people off
dating you, however, the sad thing is I know that it does. But only people who
are shallow or have no concept of how to deal with difference.</div>
<div class="MsoNormal">
I have had experience if it in the past, not recently, but I
made the mistake in thinking that everyone is capable of compassion and
understanding when it comes to something you have no control over. There are
some very shallow people in this world. They surround us every day, seeking out
perfection that frankly doesn’t exist. You shouldn’t have to hide who you are
in terms of your RA and how it makes you different, but at the same time RA
doesn’t define us as people. It’s not the first thing you mention when you meet
someone in the street, or the first thing you tell a waitress or a car salesman.
Mainly because you don’t see it, it is invisible. Where it gets complicated is
withholding the truth. Lying about your situation, it doesn’t need to be done.
If you feel you have to lie then you must not feel comfortable with that
person.</div>
<div class="MsoNormal">
With friendships, things are a little easier because friends
should be friends no matter what, they are not judging you on the same basis a
potential partner would. It shouldn’t matter to them how long it takes you to
get dressed in the morning or that you can’t do a particular activity because
of your disability. If someone won’t befriend you or judges you because of
having a chronic illness, they don’t deserve to be in your life anyway. Ask
yourself, would it matter to me if any of my friends were in that situation? I
am sure your response will be as mine, a big, fat no. This rule should really also
apply to potential partners. As yourself, do you want to be with someone who cannot
see past what you have? Do you want to be with someone who is put off by an
illness and how it might affect their lives, as opposed to wanting to be with
you and help you through it? What about the future, I mean, if that person can’t
accept something like RA, how would they feel about something terrible like
cancer? Chances are they probably wouldn’t support you through that either. So
that should tell you that deep down, that is not a good person, and definitely
not a person you want to be in a relationship with. </div>
<div class="MsoNormal">
Anyway during the excitement of getting to know someone and
dating there is nothing scarier than having to reveal something about yourself
you feel might scare the person you like away. This could be anything though,
like the car you drive, the job you do or revealing some embarrassing photos
from your past. But if you are confident and comfortable with who you are and
what you have, then it doesn’t have to be a big deal. It doesn’t have to be
something huge and shocking. I know it’s easy to say that but I have got to the
point in my life where I am comfortable with who and what I am and if people
don’t like it... well they know what they can do. </div>
<div class="MsoNormal">
OK so having something like RA or a chronic illness or a
disability or whatever means you are different. But different is good. The way
I see it, you are even more special. You are special because of the fight you
have to live a normal life each day. You are special because you are brave
despite the pain and sadness you may feel sometimes. You are special because
you hold your head up high and present a smile even in the darkest of times. If
anyone is smart enough to know how special you are then they might be lucky
enough to keep you.</div>
<div class="MsoNormal">
People I talk to are often intrigued and very interested in
what my condition means to me, how I overcome things, how I battle through to
live a normal life. And when I talk about what I have overcome to be where I am
today, people are impressed. It is impressive, and shows great strength of
character and confidence when you are able to talk about something like that
openly, because it’s not every day you meet interesting people with stories to
tell. Stories that people admire. As you grow older, and I don’t mean to get
all wisdom based on you now as I know I am still young, you realise that looks
and physical things are not the most vital thing about what attracts you to
someone. It becomes more about the whole package, your personality, your
strength of character, your confidence, your achievements etc.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
I say this because I know a lot of you who are reading may
still be at school or at college or at the stage where people can be
judgemental because you are different... It might not be as easy for other
people to understand because they haven’t experienced much of life yet and don’t
appreciate other peoples’ feelings as much as you do when you grow up. Kids can
be mean, I know, I was picked on (not massively) but for stupid things when I
was in school especially by boys and its humiliating and makes you feel ugly
and horrible about yourself. The thing to remember is that you as a whole will
be a better person in the future because of what you are going through right
now, and those who sit around and judge what they know nothing about will
probably not get very far in life anyway. </div>
<div class="MsoNormal">
When you grow up, you will realise what is important and
it’s not all about how someone looks or how they dress or even how they walk or
talk, what’s important is the type of person you are, what you do with your
time and how you treat others. Someone who appreciates these things is the type
of partner you should be looking for, and if he looks like Brad Pitt that’s
just a bonus (wink wink).</div>
<div class="MsoNormal">
The same principle should apply for employers. I know that
your RA may affect your ability to do some types of jobs but you will know your
own capabilities and probably won’t go for something that you know you can’t
possibly do, or you will figure out a way that you can do it prior to applying.
So whilst it is important to let your employer, or potential employers know
about what you have because of all sorts of legal reasons as well as moral
ones, they should not base their decision to employ you on that factor. It
should be about your suitability for that job and whether you can do it well.
They won’t be looking at your appearance, they will be looking for experience
so use your positive stories of strength and overcoming daily challenges just
to live as reasons why you stand above others for that role. You will have
probably experienced more challenges in your life, even at a young age, than
most just for living with a chronic condition. So as you should in most
situations, don’t dwell on what restrictions you have, but what having the
condition has given you, the skills you have learnt, the strength and
confidence you have built because you are a fighter.<span style="mso-spacerun: yes;"> </span>Any good employer should see that you stand
out for a good reason, not because of your limitations.</div>
<div class="MsoNormal">
And once again we go back to relationships. You stand out
from the crowd because you are different. Because you are special. Because of
what you have to do each day to survive and function. Someone special will see
that you are amazing, and beautiful because of what you have overcome, and
anyone else isn’t really worth bothering with.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-80918691873065898862012-05-10T21:15:00.001+01:002012-05-10T21:15:42.624+01:00Throw Me A Bone<!--[if gte mso 9]><xml>
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I have gone from not having much of a life or career because
of pain to not having much of a life because of my career and the pain and
tiredness it causes after a hard day’s work. I am sure those of you who work
with RA will know that work does take up pretty much all of your energy and
strength, and doesn’t leave room for much else! Which is why it is so important
to me that I do something I enjoy for work, if I am not going to get much of a
social life after it! I don’t miss being sat at home, daydreaming about living
a ‘normal’ life one bit. Waiting around for the day to ‘start’ when everyone
comes back from their jobs when you have barely got going is not a nice feeling.
It’s demeaning and makes you feel worthless, as I have said many times before.
But I do know that work isn’t everything. You shouldn’t <span style="mso-spacerun: yes;"> </span>live to work, so people keep telling me, but
where I am right now is where I have longed to be, something I have deep down
always wanted, to feel important, valued and more than just the poor girl with
RA.</div>
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I don’t intend to work until it kills me, don’t think I am
that stupid. But I am just trying to get the balance right. At the moment,
whilst I get used to having a job again, having responsibilities again, I am
having to let people down on occasions. Friends and family have had to meet
without me because by the time it gets round to doing something with them, I
simply don’t have the physical or mental strength to a) hold a conversation, b)
make the effort to look half decent to go out and c) drive (when my knees and
ankles are fat and sore from being on my feet all day). I don’t expect everyone
to get that, they might think that I am simply a bad friend or someone who lets
people down continuously but I hope that if they are true friends they might
try to comprehend the transition I am going through at the moment and that just
because I am doing something normal again, like going to work, it does not mean
I am cured.</div>
<div class="MsoNormal">
On that note, isn’t it amazing how many people think that
everything is perfectly alright again, that your RA has magically disappeared, because
you are back to work? Do they think that the pain doesn’t wake you up in the
night anymore? That the pain and stiffness is no longer there in the mornings?
(In fact some days its’ worse now than before from working hard or doing too
much the previous day) The fact is, RA doesn’t go away. It never goes away. It’s
just that some days are better than others, and on the bad days time teaches
you how to cope a little better. <span style="mso-spacerun: yes;"> </span>I am
not complaining about the ‘you look well’ comments, or ‘look at you doing so
well and feeling so much better these days!’ That’s great, but they don’t see
the occasions I go home and pretty much collapse into tears as I have given the
day everything I have got. I cry because of the pain and exhaustion and with
pride that I managed to make it through the day without breaking down in front
of people (especially my customers, they don’t want tears with their tea and
cake!)</div>
<div class="MsoNormal">
Sometimes I just miss being looked after a little bit.
Perhaps going home to mum or someone knowing that they might just help you make
tea, or do your washing as you’re having a bad day. But in my quest to remain independent,
I must carry on with these other little jobs myself. (Some nights I don’t eat
dinner, for simple lack of energy to be able to cook, or not being able to
stand for too long as my legs hurt like hell).</div>
<div class="MsoNormal">
Anyways, I am rambling. You get the idea. It’s too much
sometimes, that’s all. Throw me a bone here.</div>
<div class="MsoNormal">
<br /></div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-11852416065176297142012-04-24T19:50:00.001+01:002012-04-24T19:50:36.258+01:00Life... and the cat<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
Recently I have been experiencing these overwhelming moments
of sadness and grief. Not for any particular reason though, and I am struggling
to figure out what it is I am sad about. The only thing I can put it down to is
feeling alone right now. Life seems to be moving so quickly, and generally I am
really happy with what I have achieved, especially recently with my business
and taking on so much professionally. But there seems to be something missing.
I don’t notice it as much after a busy day at the ‘office’, I am frankly so
shattered that I get home and do what needs to be done and then look forward to
sleep! But on the days where I feel more alive with energy to burn, I have
found myself in a bit of a void when I return home. </div>
<div class="MsoNormal">
I don’t mind living alone. It doesn’t bother me, and I don’t
care if people think I am sad or pathetic for doing so. For me it signifies independence
and being able to live a normal life. But I do miss the days I would await the
arrival of a loved one and share stories about the day or have someone special
close by for when I needed comfort. It’s not so easy to get sympathy or
compassion from your cat who runs off at any given moment... and frankly, well
he’s a cat.</div>
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I guess what scares me is the length of time this will go on
for. I can cope with this intermission where I ‘find myself’ again after years
of being in a relationship. I can deal with a few nights alone when friends are
with loved ones. I don’t mind having peace and quiet as I relax into a bubble
bath. But I don’t think I can stand the emptiness forever. I don’t think I can
deal with the silence for much longer. I’ve noticed that my sadness brings pain
with it, making my joints flare as I’ve often noticed before. My emotional state
has a massive impact on my physical state. I try and snap myself out of it to
feel better, after all I am in a pretty good place in my life, all things
considered. But I still can’t shake the feeling of... ‘Is this it?’ Is this all
I can hope for now? After all, I have achieved what I have set out to do over
the past few years, return to work and be able to live independently... I just didn’t
expect to be <i style="mso-bidi-font-style: normal;">so</i> independent so fast.
It’s nice to rely on someone else to cheer you up sometimes. I forgot how nice
it is to know that after a really tough day, someone is waiting at home to make
it all better and help with the necessary things that follow work like cooking,
cleaning etc. It really is difficult to complete all those tasks on a day where
you barely get through work, let alone face all the normal things people do
when they return home. Just be nice to have a helping hand sometimes, from
someone who actually wants to be there.</div>
<div class="MsoNormal">
Tell me, does everyone have these ‘sad’ moments where they
contemplate their life and everything in it that might be missing? I do know
how to beat myself up hey!</div>
<div class="MsoNormal">
I have my next round of rituximab in a few weeks, it will be
interesting to see how I cope with that and work, remembering the tough side
effects I have felt before. To be honest, I won’t have much choice but to get
on with it. I’ll only be letting myself down but my business can’t run without
me!</div>
<div class="MsoNormal">
<br /></div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-56671965041011342642012-04-06T21:58:00.002+01:002012-04-06T21:58:51.097+01:00Pride and Prejudice<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">I look around me now and can’t quite grasp how I got to this point. I think back to three years ago, almost to the day actually when I received the diagnosis that was to change my life forever, and it’s hard to believe that after all the ups and downs, I am still here... battling on with my whole life before me. I have gained many friends along the way, offering me support and comfort when I could see no way out of the dark spaces I kept falling into. I have also lost friends along the way, I mean the friends who were never really true friends to begin with and showed their true colours when I needed them most. </div><div class="MsoNormal">But I could not be happier when I think of the great friends who are with me now, and have been along my journey.. throughout it all. A friend told me today she was proud of me... but really I am the one who should be proud. And I am, I am so proud of the people who have stuck by me through the endless crap, pain and sorrow my illness has caused, and the hurt I have felt by those who let me down. It takes great strength of character to put aside your own troubles for a moment and listen, I mean really listen, to what someone else is feeling or experiencing and offering them comfort. I am very lucky in this way, because I know a hell of a lot of people who will never let me down, no matter what the future holds.</div><div class="MsoNormal">I guess I am reflecting on what has seemed the hardest part of my life so far because this has been a very big week for me. I am now the proud proprietor of my very own cafe. Yes, me, the girl with arthritis who thought she would never work again, or achieve anything of any worthy following my diagnosis. I have built a business, from scratch, and fought for it, put my blood, sweat and tears into it and I have bloody well done it. I am overwhelmed at the support from not only my friends and family, but from the public and local people who have come along for the ride. I never expected to reach the point where I was actually proud of myself again. Up until now my proudest moment was achieving my degree, or getting the job of my dreams right out of uni. But when that all came crashing down because of this dreaded life sentence, I admit I lost all hope of doing something worthwhile, being someone worthwhile again.</div><div class="MsoNormal">Here I stand today in my beautiful little cafe which belongs to me and I can’t help but smile and cry at what it took me to get here. The thought of working on a massive project like this was daunting enough, but actually going back to a routine, a job again has terrified me more. Once the cafe was finished I had sleepless nights about whether I had it in me to get up every day and go to work, which is ridiculous because people do it every day. But if you don’t have RA, you couldn’t possibly understand the sheer nightmare it is sometimes to even get out of bed in the morning, let alone attempt to face the day ahead. I still have those days, don’t get me wrong, and until a miracle cure is found I know I will for the rest of my life to some degree. <span style="mso-spacerun: yes;"> </span>But the fact I know I have a beautiful place that I built waiting for me is enough to try and get through those first few painful hours. I have to succeed. Failure is just not an option now and I will keep going... even if I have to be carried to my place of work because I won’t let this destroy my dreams again. I gave into RA once, and it ruined me... because I let it mainly and I didn’t have the support around me that I so desperately needed. Things are different now and the comfort of knowing there are people around to keep me safe and happy is good enough for me to try my very best each day.</div><div class="MsoNormal">I hope that those reading this who are in a dark place right now and have very little hope, for whatever reason, will take notice and know that if I can do it... there is nothing stopping you either. It may take time; it may take a lot of time. But even when the mountain in front of you is humongous and ghastly... you will get over it. It took me three long years and two new hips to get over mine... but I did it. I feel a great sense of achievement today, even though my joints are painful, my body aches and the fatigue is dreadful because of the change in routine to continuous work again. But I hope to adjust to this new role and in time my body will get used to it again. In the mean time... I must sleep. Amazing how tired you can be serving tea and cakes all day to lovely people... But I love my job. And I love this new lease of life. Thank you... you know who you are.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-91593336080133574242012-03-15T17:47:00.001+00:002012-03-15T17:47:49.399+00:00The Point Is...?<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">I know that there are many people reading this whose lives, for one reason or another, have not turned out the way they planned. RA could be the reason, or a contributor, to why you think you’re not where you’re supposed to be. For example, I remember the day I left college and thinking that the world was my oyster. I was going to uni, to study fashion (which I loved) and I had it all set in my head I was going to meet the man of my dreams, move away from home and live in a big city where I would work in a very glamorous and well paid job. So, pretty much none of that worked out (I mean I did meet the man of my dreams but he’s not around anymore). However I do think that this is maybe where I was supposed to be all along. I am content, perhaps a little lonely but have the comfort of friends and family close by and far away, and I am doing something I thoroughly enjoy. OK so it’s not fashion as such, but it is creative and it’s a something to call my own. Something I have built from scratch and can be proud of, so maybe that’s all I really wanted all along. I may not be earning mega bucks, far from it, but there is still time!</div><div class="MsoNormal">My point is, at one time probably early on in life we all make our plans, map out our dreams and how we are going to get there and expect things to go our way. Unfortunately, as we grow older, we find out that things don’t always go our way because, well just because life is unfair sometimes. Things happen along the way which change our minds, change our ideas of happiness and determine our paths. Whether these are good things like getting a new job or starting a new relationship or not so good things like illness and break ups, they all make us who we are today and what we will be in the future. A few people have said to me in the past how awful things must have been for me or they have complained they are not doing what they wanted too but I don’t agree with this. I have been through crappy things yes, but the outcome is that I feel I am a better person and I have learnt things about life and compassion that I probably never would have if my life had have gone the way I wanted it to. If you are not living your dream, find a new one... It obviously wasn’t your dream all along just an idea of what you thought would make you happy when the reality is life is what you make it. If you want to be happy, go out there and grab some happiness. I know it’s not easy for us all and it may take longer than others, but I made a pact with myself when I was at my lowest of low that as soon as I was able to, I would do something worthwhile with my time, something I enjoyed and something that made me truly happy. It took a while to get there, but the determination to get better so that I could at least try to fulfil some of those ambitions got me through.</div><div class="MsoNormal">A life has to have high and low points, that’s why it’s called living. Experiencing all these things is forming the people we are and who we are supposed to be, or perhaps we are not supposed to be anything at all. It could be as simple as we are who we are right now and all of our aspirations just get us through the day? Anyway, life is a pickle and I hate to get all philosophical on you, it’s just a lot of things have happened to me personally and to those I love lately that I just didn’t expect, and neither did they. It got me thinking about advice I could give them and myself about why these things happen. How are you supposed to make sense of something that is devastating and changes your whole life, seemingly for the worse? Well this is the only thing my little mind could come up with... maybe what you thought was meant to be wasn’t right in the first place and these moments and how you come through them will ultimately define your future and lead to something better where you are happier than you ever imagined. Well... that’s just my theory anyway.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-48936988834924516972012-03-02T09:06:00.005+00:002012-03-02T09:06:36.890+00:00Happy Thoughts<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">Feeling quite positive at the moment. For starters my recovery post op is going really well, actually feeling myself again. I have been using my time stuck indoors, for lack of being able to drive, effectively by looking at my life and how I can improve my situation. I needed a project... so I’ve decided to expand my business and return to working relatively normal hours. Still not quite full time, but as I work for myself I can fit it around my condition and still have a career. I am really excited about it actually. I can’t say too much at the moment, as there are a few selfish and unsupportive people out there who are just out to ruin things for me and make it difficult to succeed, but it’s great news and means a new location to work from, new people and hopefully plenty of customers. So the summer is looking busy, and exciting. </div><div class="MsoNormal">I know I can handle the increased pressure and working a few more hours because I only have myself to let down if a bad day or week occurs. Answering to employers again just seems far too daunting, but as I get more involved and used to working longer hours I am sure it won’t seem as bad as expected. Frankly, I am sick of living on benefits, sick of relying on others and need to do this for myself.</div><div class="MsoNormal">I need to make something of myself and now the hip ops are out the way hopefully I can focus on what I really want from life, a healthy balance of work, rest and play (of course!)</div><div class="MsoNormal">I miss having structure to my day, I know those of you who cannot work will understand this. The novelty of having so much free time soon wears off and you find it difficult to know what to do with yourself. Having a reason to get up in the morning brings me determination and a purpose which is so important to your mental health too. </div><div class="MsoNormal">I know that my family and friends are fully behind me and support me and will be there when i need them so I can go into this with a little army of helpers. Knowing I can run things my way and in a relaxed manner is a great feeling.</div><div class="MsoNormal">In terms of my personal life, my sister leaves today safe in the knowledge I can take care of myself again after she has been an amazing help after my operation. I will be really sad to see her go as its been lovely having the company but this is another reason I need to get back out there and not sit at home alone pondering. I have a certain someone who’s a little bit special to thank for the smile on my face too... early days and let’s just say its fun and refreshing to be around someone who appreciates spending time with you and makes you smile even when they aren’t around. I didn’t realise how much I missed that and how much I have relied on myself in the past for happiness. Trusting someone is hard, but I am willing to try and enjoy myself in the process for a little while...</div><div class="MsoNormal">(Cheeky smile)</div><div class="MsoNormal">So here’s to a fresh start and new projects... It’s going to be a busy day.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-54206419302751306312012-02-18T09:48:00.001+00:002012-02-18T09:48:54.155+00:00Onwards and Upwards<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">So once again I have spent the past few weeks preparing for and then recovering from surgery. I had my left hip replaced last week and the experience was far different from my previous one with the right hip. I went into hospital more fearful of being alone post op than the actual operation itself, so I was quite surprised and distressed to wake up in the recovery room in absolute agony. Now, I don’t want to put anyone off having replacements at all because it’s different for everyone and my other hip was not painful at all after the operation.</div><div class="MsoNormal">I am not sure if different anaesthesia was used in this operation but it’s hard to describe the sheer pain and discomfort I woke with which then lasted several days. I was pumped full of morphine to try and get the pain under control which eventually took effect. I had very little sleep for the first few days, and even now actually as sleeping on your back like a beached whale is no bloody fun. I forgot how much the nurses pester you following an operation, I was woken throughout the night for observations and tests (which don’t get me wrong I am grateful for) but it doesn’t let you get much well needed rest.</div><div class="MsoNormal">Knowing I had the support of family and friends was reassuring and I had visits from them all in the short time I was actually on the ward.<span> </span>But I couldn’t help feeling that dread of going home to an empty house. Obviously, with my last op I was in a relationship which reassured me I wouldn’t be alone every day whilst I recovered. It’s not just the practical side of having help at home (as you can barely do anything alone post op) but having company and the love of someone you know will take care of you. I really miss that, but on the upside my guardian angel of a sister has come to stay with me to nurse me all better. She has attended to my every need and I couldn’t be more grateful or proud of her, she’s going to make a wonderful mum one day!</div><div class="MsoNormal">It’s been lovely having her here and spending time with her and my fear was unfounded because I have never felt less alone. I have had my moments of sadness and loss, as expected, because the reality of a relationship ending really does hit home after a major operation, combined with loads of drugs which make you confused anyway. But I am feeling really happy and confident, more each day, because there is some pride in knowing you can be alone and that your own company isn’t so bad after all. My friends and family have rallied round, as always, checking on me and cheering me up so I am in a really good place right now which I didn’t expect. I guess I have just realised the selfishness of some people and take pride in knowing that there isn’t anything I wouldn’t do for someone I loved. It’s obviously not the right person to be with if they can’t support you through the roughest times and feel there is always something better. Well I couldn’t be better thank you very much and knowing that I am a good person makes me hold my head up high, which is more than I can say for those who haven’t been there.</div><div class="MsoNormal">Having a long term disease like RA is hard. Hard for you, hard for those around you, but it shouldn’t change the way you feel about someone and it should definitely not make you feel like there is probably something better. I have changed as a person, but in a wonderful way, over the years since my diagnosis. I am more independent, I am strong and I am compassionate (more so than I have ever been) so if that’s not good enough I don’t know what is. </div><div class="MsoNormal">On the upside, I have good news. Some lovely fella may have noticed all this and is actually taking me on a date, in fact the prospect of a few dates when I am back on my feet. All with people who know and understand my condition and don’t give a damn. Good people I like to think. So after all the hurt and pain, my feelings that no one would be interested in someone like me and all my RA baggage are ridiculous. Because I am not RA. RA is not me. I am still a person and I like to think a great one at that who has lots to offer so it is stupid to think there isn’t someone out there for everyone who will accept you for just who you are. This is just some advice to those who might be in the same situation where relationships have ended because someone can’t see past what you have, and focus on who you are and what you have to offer. Someone will come along and sweep you off your feet I promise. Because everyone has something, whether its illness, money issues, family problems, confidence issues or whatever... we are all going through something so why is having RA any different. It’s just something you have and a part of life, it doesn’t define you. If you were filling out a questionnaire on a dating site or something it isn’t, well it shouldn’t be, the first thing you say about yourself because you are more than that.</div><div class="MsoNormal">Anyway, best get some beauty sleep for my hot date, I’ve only got a couple of weeks to prepare and this post op look is so not working for me ;)</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-66937165352010103832012-02-04T05:25:00.001+00:002012-02-04T05:25:51.686+00:00In My Dreams<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">Sleeping has become a bit of an issue lately. With so much going on, I can’t seem to switch my mind off. I have never really been the best at sleeping through the night, well not for the past couple of years at least. It always seem to be something, whether its pain, worries or sadness. At the moment I think it’s probably more of the sadness and worries. </div><div class="MsoNormal">I worry about my poor grandfather, who’s very sick in hospital at the moment and I pray that he will get better soon. That’s the one drawback of having such a close family I guess, it hurts so much when your loved ones are poorly or going through a hard time. I worry about my future, not sure which direction to head in next and with so many ideas I can’t seem to settle on anything, it just seems too overwhelming. I am sad about the loss of someone close, the breakdown of a long relationship. Every day I go through the motions of any break up situation, sadness, anger, fear, regret, guilt etc etc. It’s hard on you physically and emotionally to feel all these things at once and its taking its toll on my health, as expected.</div><div class="MsoNormal">The stress of everything has already caused my other hip to collapse, hence the emergency surgery I am having next week to replace it. But the most awful thing is the incredibly long days and nights with little sleep. I lie awake torturing myself about what I have done wrong or how things could have been different. I lie awake worried about my family and this awful situation. I lie awake not quite sure what the future holds and where to turn next.</div><div class="MsoNormal">I know it’s going to be like this for the foreseeable future, any combination of those things would be enough to affect anyone but throw in a broken body and it’s all just a little too much. I know, well I hope, that things will get better. After a rough time you have to experience some good things right? Well I am laying all my hopes on that anyway. I have to believe that there is something better, that all of this has a reason or purpose because if not what is the point? I wish that things could just be simple, in terms of my lost relationship anyway, but I guess life just gets in the way sometimes. I am lucky that I have my independence back, something I didn’t have the last time my heart was broken. It makes all the difference when you can actually get up in the morning and try to go about life as normal. But being able to cope on your own doesn’t mean you don’t miss someone being there. It’s normal to miss the person you shared your life with but it’s even harder when you know that person knew everything about you, RA included. I wonder if I will ever find someone who accepts me for who I am RA and all. I guess that is my biggest fear as I have spent the past few months ready to settle down and prepared for sharing my life with someone and even starting a family. Now all of that has unexpectedly been taken away, I wonder will it ever come back. Or was this supposed to happen because something better is going to come along.</div><div class="MsoNormal">Who knows? But all I really need right now is peace. A restful night of good dreams that make me hopeful about the situation. The prospect of sleeping on my sodding back for six weeks post op is not making me jump for joy let’s just say that. But the amount of drugs pumped into me for my op may at least make me so numb I forget about everything for a while and rest unaware. The one thing that I am grateful for is the amazing and continued support from family, friends and all of you! The lovely emails I receive give me strength and motivation to carry on, knowing I am at least making a difference to all your lives.</div><div class="MsoNormal">My sister is moving in for a bit to take care of me post op, and family and friends have all offered their services too so hopefully my fear of being alone whilst not so independent for the next few weeks is just that, fear not reality.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com2tag:blogger.com,1999:blog-1379278689668630184.post-64163226009439529162012-01-16T18:09:00.002+00:002012-01-16T18:09:26.924+00:00Moving On<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">The past couple of weeks have been the hardest in my life so far. After nearly seven years I and my partner are going our separate ways. Things didn’t work out and although I am devastated I have to look at this as a new chapter in my life. The worst thing is I feel like I have lost my best friend, someone who knows me inside out and I really wanted things to work out. We just want different things and it has been hard to come to terms with when you imagined spending the rest of your life with someone. I know it’s for the best now, but it doesn’t make things easier as thoughts run through my head about eventually finding someone who will understand my condition and accept me for who I am. Having RA is not the most attractive thing in the world and I can’t help thinking that no-one will be interested because of the baggage that comes with it. But I am more independent and stronger than I have ever been so I know that I won’t have to rely on anyone. I want to find love not a carer. I wish things were easier but if it’s not working, there is only so much that you can fight for.</div><div class="MsoNormal">So, I am living alone for the first time. It feels strangely liberating and exciting, having to concentrate on me and only me. It seems like it has been about everyone else for so long. I know need to figure out what I want from life, in terms of career, relationships and the future. Where to start? The prospect of thinking about all these things is daunting to say the least but I will face it one day at a time, with the support of my loved ones who have been amazing through this difficult time. I am actually looking forward to the future.</div><div class="MsoNormal">When I say future, I don’t mean the immediate future as more frustrating news is that my left hip has now collapsed as my right did last summer. A replacement is most definite, it’s just a case of when and I have a feeling that will be pretty soon. The frustrating thing is that this means I’ll be out of action for a little while, again, when I really want to be moving on and keeping busy to get through everything else that has happened. But I suppose these things happen, for a reason I hope, so that once that is done and dusted I don’t have to worry about any more hips replacements for at least a decade! I meet with the surgeon this week to fix an op date. It’s true what they say, it never rains but it pours.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com3tag:blogger.com,1999:blog-1379278689668630184.post-50876336293520929202012-01-06T17:51:00.002+00:002012-01-06T17:51:23.773+00:00Happy New Year<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">I hope everyone enjoyed the festivities over Christmas and New Year. It’s fair to say my holiday season was.... eventful. For the most part I was extremely lucky and very grateful to spend time with my family and good friends and I was spoilt with gifts. Christmas is a strange time as you feel under pressure to be happy and celebrate and when you are feeling quite low it’s difficult to put a brave face on the whole time. Proof that my immune system is well and truly screwed is that I still have a cold, four weeks after it began. Its nearly disappeared now thank the lord but it hasn’t been the best of times the last few weeks.</div><div class="MsoNormal">I received some awful news on New Years day about my dear Grandad, he is very poorly at the moment and I am really saddened by his illness. My thoughts have been with him every day making it hard to concentrate on anything else really including the year ahead. The good thing is the whole family have pulled together in support of each other at this difficult time so I can’t ask for more than that other than that my Grandad makes a full recovery very quickly. He is the kind of man you rarely see these days. Kind, considerate, loving and would do anything for his family. It is a blessing to know such a person let alone have him in our family so to see him unwell is awful to say the least. I know that he is strong and will want to pull through. It is his beautiful nature that makes me smile and cry at the same time, even today as we stood at his bedside whilst he struggled to talk all he could ask is if we were all ok... imagine that, someone so selfless that all they think of is the wellness of others. I really hope that I have at least some attributes of this amazing person who brings out the best in everyone around him.</div><div class="MsoNormal">Anyway, an update on hipgate part 2 is that the docs want to hold off as long as possible before replacing my other malfunctioning hip. I have good days and bad days with it but can feel it getting worse. I can’t think about it at the moment as I have too much going on, for starters I need to find some work to boost my income so that I can start planning for the future. This is the year that I would like to start thinking (at least) about saving for our own home and furniture and planning for a family. I discussed with my specialist only a few days ago about the consequences of medications when considering having a baby. I am a little more clued up on the whole process now, I know for definite that I have to stop all medications and be off them for at least 6 months before trying to conceive so at least with that in mind I can start thinking about when would be a good time. It’s a scary thought, being med free (as well as the actual having a child thing!) but I am assured that the doctors will do everything they can to keep me comfortable during that period when I can’t control my disease with medications so I guess it’s just weighing up how much I want children and when I am going to be ready.</div><div class="MsoNormal">I know from what I have read and the advice I have been given that the longer you leave it, the less chance there is of conceiving and this chance is lessened further with complications like RA so it does worry me a little that leaving it too long would make things a lot harder. I do feel slightly under pressure with having to plan everything as I know most people don’t plan to have children as such. Everything has to be fully thought out though when you live with a disease, from the moment you get up and decide what you are capable of doing today, to the moment you go to bed and wonder what you will be capable of tomorrow. I guess I always knew from diagnosis that planning for the future wouldn’t come easy anymore. But hey... when are things ever simple?</div><div class="MsoNormal">So, my days at present are pretty packed full with worry for my family, job hunting for perfect career, hours and salary and contemplating the future (i.e. how to buy a house and start a family with no money... that’s a tricky one... answers on a postcard please).</div><div class="MsoNormal">Please let your thoughts be with my wonderful family and I write this wishing my Grandad be safe and well and be back home with us very soon.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com1tag:blogger.com,1999:blog-1379278689668630184.post-49166168155790562712011-12-24T07:23:00.001+00:002011-12-24T07:23:43.376+00:00Cold Sore Christmas<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</style> <![endif]--> <div class="MsoNormal">Oh what a beautiful face I must have right now. Currently trying out the Rudolph look with my bright red nose, due to constant blowing my brains out, and my eyes are nice and sunken in my head due to lack of sleep. To top it off I have received a fabulous Christmas present, one I’ve never ever had before... a delightful viral infection in the form of a shiny cold sore on my lip. Get me... I am on fire this Christmas.</div><div class="MsoNormal">The cold sore is getting me down, but that’s the reason it appeared most likely in the first place I am told. You can get them when run down, or it could be connected to the huge and overwhelming cold I have had this week. I can honestly say I haven’t felt this rough in a long time. I thought I might escape the dreaded cold virus this year as I have done pretty well in preparation (eating well, wrapping up warm etc) but I suppose having treatment that wipes out your immune system can really leave you open to anything. The cold has inevitably caused a bit of a flare up, but it’s manageable (with plenty of pain relief as always) so it’s not all bad.</div><div class="MsoNormal">I suppose the sacrifices I make to further my business, by standing out in the cold on a market stall for 12 hours with crippling arthritis can only lead to consequences. I decided to do the Christmas markets, with the help of my amazing sister by my side, to try and make a bit of extra money for the festive period and also to get in a festive mood I suppose. I forgot how hard working a full day is, I mean it’s not like I do it all the time. It really took it out of me, I am left exhausted and full of cold and with a nice addition to my face which means Christmas kisses are out of the question for me. Was it worth it though? Well in some ways yes, because it’s nice to get out and working, talking to people and of course promoting the business. But in other ways no, I unfortunately didn’t make my first million from a market stall (obvious really) so the long day and all the prep that went into it didn’t pay off as such in cash form. But I did enjoy spending time with my sister, being amongst the festive cheer of the public doped up on mulled wine and mince pies and it was almost like I had work colleagues again in the form of the other traders. </div><div class="MsoNormal">I know I am still experimenting with my capabilities and the limits of my condition. Sometimes I am not sure how far to push myself and its only clear I’ve gone too far the next day when I am all bent out of shape in pain. But we live and learn and I am definitely still learning. I think pain is much more manageable when it is for a reason. Before, when I was pretty much bed bound, I got so frustrated with the level of pain even though I wasn’t doing anything! So the fact I have achieved something before pain follows is so much better. </div><div class="MsoNormal">This Christmas I will be in recovery mode, making the most out of the family sofa, plentiful food and company. I will be dodging the cameras of friends and family best I can (I don’t wish to remember the addition to my face this Christmas... close ups are not an option thank you).</div><div class="MsoNormal">It’s Christmas Eve and I am definitely feeling joyful and thankful for everything I have, apart from the cold sore. I wish all my readers a very, very, merry Christmas and I hope it is pain (and cold sore) free for all of you even for a day so you can enjoy the time with your loved ones. I will be thinking of you all and hope that Santa brings you everything you dreamt of.</div><div class="MsoNormal">Merry Christmas x</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com0tag:blogger.com,1999:blog-1379278689668630184.post-10132818043309921272011-12-21T16:48:00.001+00:002011-12-21T16:48:58.956+00:00In Loving Memory<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">I received some very sad and shocking news late last week. An old friend and work colleague of mine sadly passed away after battling with breast cancer. She was so very young and left behind a beautiful 14 year old daughter. I struggle to make sense of the world when something like this happens. It reminds me just how short and precious life is and how it can end at any moment for any one of us. At this awful time, right before Christmas when everyone is celebrating, I can’t imagine what her poor family must be going through. When I needed a friend most after my mum was diagnosed with breast cancer herself, it was Lisa who was there for me. She listened to my worries and fears as we worked together and was often a shoulder to cry on. So how unfortunate that just 5 years later she should suffer the same fate and not win her battle as my mum did. I will never forget her kindness and strength, she was one of the loveliest people I have ever known and I write this in tribute to her and her family. I admit we haven’t had much contact since I left my job where she worked, but only recently when I found out about her illness I contacted her and expressed my deepest sympathy and get well wishes. At that time she was doing well, and I thought she would recover and what makes me even more sad is that she expressed her sadness at hearing I have been unwell too. I do wish that I had told her then how much I admired her and what a kind person she was to me, but I never thought for a minute Lisa wouldn’t be around anymore.</div><div class="MsoNormal">I know it’s a sombre subject but this weekend I have really been focussing on what I want out of life because who knows what is around the corner. We always take things for granted and just assume we will pass on old and grey years and years from now but as the story of my friend shows, we must appreciate life now and make the most of time with our loved ones. That is what I will be doing this Christmas, Appreciating how lucky I am to be around my family and friends. They mean the world to me and I intend to make sure they know it. I know we forget to appreciate things sometimes when we are feeling low and in pain but if you can, just remember life is far too short. I don’t mean you should rush your life and do everything right now, that would be silly, but I am now thinking about what the next few years can bring at least and what I want to achieve. I want to make sure I leave this world having all my boxes ticked (so to speak). Having children is next on the agenda and building a life for my family (except buying a house with no money may prove difficult). Anyways let’s leave on a happy note....</div><div class="MsoNormal">I wish all my readers the most wonderful Christmas. Enjoy every second of it and try to put aside your pain, even for a day, for your sake and the sake of your loved ones (who I am sure will hate to see you suffer this time of year). Remember those less fortunate than you and appreciate every smile, laugh and word shared between you and your family this year. Remember how lucky we are to have even one good day and enjoy all the good things that come with it.</div><div class="MsoNormal">Dear Lisa, rest in peace beautiful angel. Lots of love and support to your family. I will always remember you.</div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com1tag:blogger.com,1999:blog-1379278689668630184.post-41803005218032201552011-12-12T13:27:00.001+00:002011-12-12T13:27:27.151+00:00'Tis The Season<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">Christmas is nearly upon us again and I can’t help feel how fast this year has gone. If you had told me at the beginning of 2011 that this year would bring the launch of my own business, a total hip replacement and moving home amongst other things I think I may have laughed at you. It seems strange that so much can happen in 12 months and it’s easy to see from this alone how much can change. This time last year I was contemplating returning to work and beginning to look for jobs that would suit my condition, which never actually worked out hence the business launch. </div><div class="MsoNormal">The past couple of weeks have been hard, though, with the biggest of flare ups in a while. I am still suffering but powering through. I am still not quite sure what the situation is with my other hip, some days it’s awful and others not so bad so maybe it hasn’t quite deteriorated as much as I thought, but I will be keeping an eye on it. </div><div class="MsoNormal">The arrival of Christmas has meant a busy time for my business, well busier than usual anyway. I decided to attend some local Christmas markets to help generate some income because my financial situation is dire at the moment. I really want to be able to start contributing towards the life me and my partner have and it’s so frustrating when it’s not possible. As I am sure some of you are in the same situation, not able to work because of RA or working very little so you rely on your partner financially, you probably understand my predicament. I have always been an independent person, determined to pay my own way in life but the simple fact is, without my partner I would be living with my parents again and unable to live independently. I thank him so much for this but words just don’t seem quite enough. </div><div class="MsoNormal">Anyway, my search for a little part time job alongside my business, so I can still do what I love but have the security of regular income too, has been unsuccessful so far. Once again it seems I have been given no chance to prove myself to employers and not even been offered interviews for any roles. It strikes me as odd that if someone in my position with plenty of work experience including running my own company can’t get work then where does that leave those of us who have RA that have never been given the chance to gain any experience. Are you struggling to find work too? It interests me how people juggle work and their condition, when do you decide that the time is right to start work again or for the first time with RA? How do you cope financially if you don’t work? It’s a daily battle for all of us anyway without thinking of these things. The only thing holding me back is consistency as I have mentioned before. The fear of flare ups and having to have time off worries me as I hate to let people down and explaining why I can’t do things because of my RA. Let’s face it; if you don't have it then you probably won’t understand how a swollen wrist, knee or fatigue will prevent you from going about your day normally.</div><div class="MsoNormal">Anyway, what I am trying to say is all I really want this Christmas is an opportunity. To be given a chance to supplement my teeny income with some stability and regular work. It would be great to interact with people in a working environment again too as I miss that terribly as I work alone at present. To have a plan for each week would bring a renewed sense of purpose to my life again and further my rehab back into normal life. </div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com1tag:blogger.com,1999:blog-1379278689668630184.post-21832770108923282112011-11-29T09:56:00.001+00:002011-11-29T09:56:55.589+00:00Hip Gate - Part 2<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-GB</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal">I’ve had one of those mornings that should really be written off so that I can start all over again. Firstly lack of sleep again last night meant I awoke like a zombie at 6am as I couldn’t bear to lie awake in frustration any longer. I decided to go and bake some cakes however my car barely made it to the petrol station for lack of fuel (because of lack of funds). Then my card was declined (because of lack of funds). Once I got to work, it began to pour with rain so I got drenched getting out of my car. My knee gave way and I sank into a puddle and now I’m pretty sure my left hip has crumbled in the same way my right one did earlier this year. It’s only 9am.</div><div class="MsoNormal">Fan bloody tastic. I know I have said this before but I really don’t have time for a collapsed hip now. I am just starting to get my life back together following my hip replacement surgery in July. To have another replacement, which is undoubtedly the only way forward, would simply be too much to bear. I was hoping to make some decent money from my business over the Xmas period as I am running a stall at a local market (all very festive) and this requires a lot of work and preparation (which isn’t going to be easy with a broken hip).</div><div class="MsoNormal">Having to tell my partner that things have ‘hit the fan’ once again is unbearable. I think we have had enough to deal with so far this year. Why do we keep getting dealt this crappy hand? I want to scream. Of course, it could just be a bad day hip wise, but I have the familiar feeling in my hip that I had before in my right one after it collapsed. If it is the case, I am going to have to grin and bear it for the next few months at least because I need part time work, need to grow my business alongside it, and I have lots to do and focus on. Six weeks recovery at home after surgery is not an option and I am running out of patience and the ability to ask for help. If I am sick of it, no doubt those closest to me are too.</div><div class="MsoNormal">I was really looking forward to Christmas this year. The past couple of years haven’t been so perfect, because of one thing or another, but this Christmas was supposed to be the start of good things for 2012. I want to start thinking about the future, having a family, buying a house and settling into life as an adult. I don’t want to be held back by yet another broken part of me that needs fixing. Why aren’t things ever simple?!</div><div class="MsoNormal">I could really do with someone to talk to right now, a shoulder to cry on. Everything is getting to me and I am sick, so very sick, of being kicked when I am down. Hate to depress you with this rather sombre post, but I know a lot of you will relate to this feeling of being overwhelmed by bad luck. What’s worse is that I actually have something to look forward to this week, a night out with my friends which will be the first in a very long time. I was feeling excited about letting my hair down, catching up with my good friends and generally enjoying myself (and wearing heels). But this seems more and more unlikely as the pain increases in my hip each hour. I will still go, of course, as I hate to let people down but I know I won’t be able to fully enjoy myself because of the sodding pain. And did I mention how much I wanted to wear heels?! My outfit simply won’t work without them so I am taking the approach of no pain, no gain and I will deal with the aftermath on Sunday.</div><div class="MsoNormal">I am constantly reminding people that this is just life and there will be bumps in the road. Things will get better I know, but I wish I could take some of my own advice right now. I am not feeling so positive about the future as ‘hip gate-part 2’ creeps up on me. I will snap myself out of this low point in time (hopefully sooner rather than later as no one wants to be around the girl with a face like a slapped arse). Words of wisdom welcome. </div>Rheuma Girlhttp://www.blogger.com/profile/11028101927253464226noreply@blogger.com9