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.