National Arthritis Week 2013

The start of my RA journey

 

As its national arthritis week I thought I would write a blog entry on Rheumatoid arthritis as a sufferer myself. I was diagnosed with RA in the summer of 2012 at the age of 22. It all started on a Sunday morning in the April of 2012 when I woke to find I was unable to bend my right index finger. As I was staying with Uni friends and had been out on the town the night before I assumed that it was as a result of a drunken blunder. Since none of my friends could recollect me having a fall, the fact that I wore flats and could recollect the whole night this little event left me bewildered. As the weeks rolled by my finger didn’t improve and so I headed to A&E to have it checked out convinced that it must have resulted from a drunken mishap. To almost my relief it was only swollen and there were no breaks or fractures. But the mystery remained.

 

From this point, I began to experience pain in my wrists and feet but assumed it was as a result of the physical demands of my job at the time. During this period I was also under investigation for hypothyroidism due to the overwhelming fatigue and exhaustion I was experiencing. Eventually enough was enough and I saw my GP about this mystery pain I was now living with on a daily basis. He immediately referred me for a blood test to test for Rheumatoid factor. The result was astonishingly high and so I was referred onto a consultant in Rheumatology. 

After further blood tests and investigation I was diagnosed with sero-positive rheumatoid arthritis in the summer of 2012. On hearing this diagnosis I felt almost a sense of relief. I finally had an answer to explain the chronic pain I was now in at this point. I don’t think the implications of what a chronic autoimmune disease may entail hit me at the point of diagnosis. I was more concerned with what treatment was available to get me out of this rut. So I began my journey on the medication highway. A journey that many RA sufferers will know can often be a very frustrating one. Finding the right combination of DMARD’s or biologics etc can almost be likened to the quest for the Holy Grail. Once this balance is found, some RA sufferers can experience years of stability. But every RA sufferer is different and has their own unique disease and what works for some fails for others. I think having RA teaches you about patience, because it often requires the patience of a saint whilst playing the waiting game to see if medications are successful. 

Dispelling the myths of RA 

What often gets overlooked or not even considered is the mental health impact a chronic condition can have. There is nothing worse than not being able to escape pain and feeling almost like a prisoner in your own body. Trying to stay positive with a background of chronic pain and exhaustion is no mean feat, especially when you can see no light at the end of the tunnel. Many people with RA suffer with depression, so not only is there a physical impact but an emotional impact too.

For any RA sufferer, the most pressing thing anyone can say to you is ‘I believe you’ For the most part RA is an invisible illness as you can’t see pain unless the pain is restrictive to movement and then it becomes more apparent. I often get the ‘you’re young to have it’ or ‘it’s just a few aches and pains’ – two big assumptions about the condition. The other thing that I think is massively overlooked is the fatigue element of the condition. I often try and explain to people that my body is in a constant battle and this has its consequences. And it’s not a case of just being ‘tired’ but an overwhelming exhaustion where you literally feel like you have zero energy.  For me getting through a working day is an achievement. So not only do you have pain and swelling but also exhaustion to contend with. A massive bug bear of mine is people assuming what you can and can’t do.  The only person who can decide that is you. I also think that when you say ‘you’re stable at the moment’ people assume that you’re almost back to normal health. Wrong.  Saying your stable can simply mean that it’s not getting any worse and that you’re in a period where the pain is more bearable for example.

I’m sure anyone with any form of arthritis will tell you of the emotional roller-coaster that accompanies having an arthritic condition: that daily battle you have with trying to stay positive whilst in pain. For me the biggest battle is trying to get people to understand what it’s like having a chronic condition and that it’s not just a ‘few aches and pains’ In my quest to try and raise awareness I am walking a half marathon as part of a group effort next weekend to raise money for the NRAS as well as the MS society and Acorns. If you could spare a few quid to help spur us on in this fundraising challenge I'd be so grateful. Here’s a link to our fundraising page: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=teamprincess&isTeam=true 

A massive thank-you to anyone who makes a donation. It means alot to us all and of course to the charities. 

Thanks for taking the time to read

Tilly x