Arthritis and similar auto immune diseases have no cure, there’s no definitive medication that will make everyone’s pain go away. As if the pain wasn’t bad enough, it’s the trial and error of medications that cause you to be sick one month, bloated another or mentally in a worse off state the next. People who can relate to this illness will know, it’s a day to day struggle and it’s really unpredictable. I don’t mean to sound negative or scare anyone but I think it’s good to express my personal experiences.
Trying to remember when I’ve had a flare up and when I’ve felt normal this past year has been a bit of a blur and it doesn’t help that I have a memory of a goldfish (I blame the steriods). The steroids are a dangerous medication as they can affect your internal organs so I’m trying my best to get myself off of them. When you’re in such an inflamed state with no controlled medication you will take anything and they have worked (no longer having fat fingers). But they don’t tell you that getting off them is a struggle too. It’s like I have to plan the next six weeks to ensure I’ll be able to cope. With my body no longer producing cortisone – what the drug was producing for me – I need to go down 1mg a week or at least try… but there’s withdrawal symptoms. Sickness, headaches, moodswings. But anyway, I will do anything to get myself off them so I can know whether my medication is actually making me better..
Around the start of the year I was handed an injection pen to administer my methotrexate – a toxic drug which potentially can suppress my arthritis, and suppresses my immune system, which isn’t convenient. Most people cringe at the idea of injecting themselves once a week with a yellow substance but I’m a tough gal and will try anything. Although I dread taking it every week and wish I didn’t have to, to lots of people with a disease like mine, methotrexate is like poison. For me, I was quite lucky because I can hack it, to an extent. But the next day is as if I’ve relapsed. I feel nauseous, bruised, stiff and tired – these are mild side effects to the drug. Is this how it’s going to be from now on? A 20 year old that has to think oh I can’t do this or that because I will be like the living dead that day. Frustrated isn’t the word I’m telling ya.
All I want to do is throw the methotrexate pens in the bin and the docs to get me on a research trial. But I’m not a patient person. Maybe after a year I will be trying something new. It seems the steroids might be wearing off now and my joints are getting worse again, but I secretly don’t want this toxic liquid to help me. I really don’t want to live a 6 day week for the rest of my life.
After moving from the countryside to the urban city of all things student – Manchester – I found my style move from following the trends I read in ELLE and Grazia to following my own style. Friends will now tell me I hardly dress feminine; I have a sort of boyish sport look, I’d buy a new pair of trainers over heels defo. Having your own distinctive style is always a good thing.
Since 2013 Sports Luxe has become an essential trend in fashion. Especially in young adults – 16-24’s are now buying sportswear for their day to day outfits and in particular the big city students embrace this look; Leeds, Manchester, London. Maybe it’s the fast paced lifestyle we adopt so we want to be in comfort or maybe it’s because it’s just so damn cool.
Adidas Originals is a good brand to point out; with their apparel collabs with Topshop, Rita Ora and selling in Urban Outfitters they understand that their core customer wants fashionable sport. Brands are a big thing for young adults so no wonder the likes of Adidas and Nike are taking advantage. Size, Offspring and ASOS are great for buying select, exclusive trainers for loads of the top sports brands in classic to original designs.
I wear trainers about 80% not just because they go with pretty much everything but the comfort is the best thing for me. In Summer I’d have swollen feet and pain pretty much daily so trainers were a Godsend. It gave me an excuse to spend my money on a new pair every time I went on a shopping spree.
My Favourite’s; Adidas, Asics (Onitsuka Tiger’s) and Puma. My Puma Trinomics were on sale for £35 in Size and are amazing, they look a pastel blue/grey colour – great for Summer – and they are so comfy, I really recommend. Oh and the designer of the moment Ronnie Fieg has just introduced a collaboration with Puma who is already well established with Asics, he’s made some of the coolest trainer designs I’ve seen in my opinion. I also own some blue Adidas ZX500s, they’re more of a style statement and they’re good for when I don’t feel like wearing chunky boots.
Next on my list are some Adidas Originals (massive choice I know, maybe the ZX Flux and the Super Colors by Pharrell are on my wish list) and a pair of Puma Basket trainers (black leather with a white sole). I could go on about trainers for hours… maybe I am a little obsessed but who cares, I have a good excuse!
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.
my swollen fingers in Summer
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 California 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.
lifornia dream, please) but with their health fees it seems near enough impossible. But I guess that’s reality.
RheumasCloset 