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.

Saturday, 18 April 2015

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.

Monday, 13 August 2012

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.