Before I talk about all things fashion related I wanted my first post to be about Rheumatoid. I don’t think enough people know about this invisible illness and the difficulties it can bring. I’m not asking for sympathy, i just simply want awareness.
Rheumatoid disease is the second most common form of arthritis. It’s an autoimmune disease which means it is my own immune system attacking healthy joints. The main symptoms are swelling, stiffness and pain to joints. Mine rapidly got worse from April 2014 when it began attacking my feet, hands, wrists, knees and the top of my legs. Not only does it affect you physically but mentally it can cause you to feel abnormally tired and depressed.
From May was probably the worst I had ever felt. On days when I got flare ups, (which was atleast twice a week) I would have to ask my parents to tie my laces on my trainers and getting out of bed was a struggle every morning. All I kept thinking was a 19 year old shouldn’t be living like this. It also crushed my confidence. When shopping I remember dropping my change over the till because my fingers would get stuck – bent or straight. Day to day things were so difficult. As an invisible illness people would say ‘you look well’ but I felt like a wreck on the inside in every aspect. I suppose it can be seen as a positive because as a fashion student, I always want to look relatively decent but then again, no one would know when I was having a bad day unless I said something and I felt (and still feel) like I can be annoying saying how rubbish I feel each week. Ignorance from others can be a frustrating thing – like sitting on a bus, if a person older than me wanted to sit down our society would see it right for a young person to give away that seat to them, but if I didn’t give it up because I knew physically standing would be too painful for myself I would be seen as rude. And that really angers me, people are very quick to judge you on what is only seen on the outside.
Being diagnosed took a long time but I know that some people are stuck in the dark for much longer than me. With the help of my parents I was seen at the hospital as fast as possible even if it mean’t paying the fees to be seen privately. Whilst waiting for months I would scare myself looking up my symptoms on the internet, thinking it could be various autoimmune diseases, like Lupus. The waiting was probably the worst part. After going to the hospital about four times and being told it could be nothing, or fibromyalgia (which I believed was wrong) I was then asked to not take any steroids (which reduced my inflammation) so the doctor could see me at my worst. Finally, they came to the conclusion it was Rheumatoid and honestly, I cried for the rest of the day.
The annoying thing is, there is no defining cause so diagnosing something like this is difficult and it is frustrating on my behalf, I just felt like it was unfair. Why me. I never thought I would have arthritis, I thought it was something only your grandparents get. Especially when all I hear is, ‘that’s uncommon for someone your age’. It is lonely not being able to talk to someone who fully understands. I’d love to meet more people in my situation.
Now, things are getting better. I’m not free of pain, my feet are still swollen and I can become stiff and tired. But I’m thankful I was put straight onto medication before the disease could give long term damage to my joints (which I was close to).
There’s a number of treatments for Rheumatoid;
Pain killers
Anti inflammatory drugs
Anti-rheumatic drugs
Steroids (not the type gym manics take)
I was given a steroid called Prednisolone, the side effects can be rubbish (the one I was most scared about was gaining weight – obviously worrying for a girl) but also they can damage your organs if you are on them long term. I’ve been on them for nearly six months now, they’ve suppressed my inflammation by a mile but I get bruises really easily. I have to start reducing my doses and soon stop which is worrying at the minute because, now i’m only on two a day it seems like my swelling is coming back. I’m also on Naproxen which is a pain killer, it’s like a strong form of ibuprofen and on my bad days I take daily paracetamol. I also take a stomach liner tablet to prevent myself from feeling too sick from my tablets. The main medication I take weekly is the anti-rheumatic drug Methotrexate. When told how important it was to read up on the drug I was scared. It basically reduces my immune system to stop my own immune system attacking itself. Causing this, I am much more susceptible to being anaemic and getting ill easily. You are also advised to not drink over the limit or at all and not to smoke because it can damage your liver easily. As a student, I did pretty much think my life in second year would be ruined! I envied everyone my age. For some, methotrexate can make you really sick. Luckily, the only side effects I get weekly are being excessively tired, feeling achy and not having much of an appetite. The change in my lifestyle to become healthier helps reduce my stiffness, mood and fatigue. This caused me to lose a stone in weight, something I am happy about but also sad as it probably had something to do with feeling depressed and me not being used to taking so many tablets. But following a bit of an alkaline diet (I really recommend the recipe book Honestly Healthy by Corrett and Edgson) and going to the gym as much as I can has really helped me physically and mentally. I can’t stress enough how important it is to speak to people – family, friends, anyone. My mum and dad have done so much for me, I am so grateful and so lucky. I’m not sure how I would have got through this year without them.
I wouldn’t say I feel normal and I probably never will. But I need to be patient and wait until I know what medications work best for me to become as normal as I can. I will forever have to go to the doctors and the hospital for check ups but it is all worth it no matter how inconvenient it can be sometimes. I do feel like it will limit me a lot like one day I want to live in America (the Ca
lifornia dream, please) but with their health fees it seems near enough impossible. But I guess that’s reality.
I am extremely proud at the amount of knowledge I’ve gained from my illness and one day I’m sure to be an expert! I just hope that eventually, maybe there will be a cure and it will no longer be named a ‘chronic illness’ which to me sounds very negative and I wish it didn’t. I know it’s something I have to live with and although I struggle with uni (like concentrating when I’m in pain), working in retail and doing daily activities I know I will get through it because I’ve been through the worst of it now. I just need to become more positive and accept that it’s part of who I am.
RheumasCloset 