Thursday, 8 October 2015

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.

Wednesday, 24 June 2015

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.