Fight Club

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.

 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.

 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 not 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.

 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.

 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.

 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.

 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.

 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.

 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. 

 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.

 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?

  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.

 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.

That Time of Year...

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. 

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. 

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. 

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.

Stress and Strawberry Milkshake

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. 

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

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.

Choose Life

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.

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.

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.

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.

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.

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...

'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'

Secret Battles

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.

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 just knowing someone is there for you.

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 is 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, very hard. There is so much physical and emotional pain to deal with every single day. It doesn't go away. It's considered in everything you do and, as such, life choices are very difficult and much more complex.

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…). RA is unpredictable. 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.

Here’s just one example…

I tell someone ‘I’m having a bit of a flare up and struggling at the mo’

Responses… ‘Oh,  how come?’ ‘What’s brought that on?’

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 does. 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.

Get well soon. 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 so 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 how or why 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 am here for you’ 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.

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. 

Clocking Off

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. 

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, really 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.

I hated those days, so empty and miserable. 

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. 

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.

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 7.30pm 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 9.30pm most evenings but better than falling asleep in my dinner!)

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 you 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.

Anyway back to my 'tree trunk' leg... I need an ice pack, STAT.

My Hero...

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...

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...

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.

My 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. 

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.

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.

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. 

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. 

For you Grandad, miss you every day. 

Ps. I promise to write soon about my surgery which will hopefully help some of you out there suffering at present.

Strangers

Years 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?
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.
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.
 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.
 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.
 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.
 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.
 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.

Cheers To That

So 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.
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.
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.

Come Aboard The Yacht of Life

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.  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.

Anyway, the thought of it scares me a bit. Because I have put myself in the situation where I have 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.

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.

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.

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...  as I will undoubtedly be a millionaire who has cracked the formula to a happy and healthy life for everyone.

Drive By

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.

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.

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?!)
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!)
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.

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.  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).
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).    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.