Hello! Yes, it’s true you are not dreaming I have managed to upload something within the same week as my last blog post, miracles do happen! As always, I do hope you are well and that you had a great week and weekend. I’m just going to get straight into today’s blog which as per the title is to do with World Arthritis day on the 12th of October. As mentioned in my last post I was approached by Versus Arthritis to take part in there #PainNoFilter campaign for WAD, although I have uploaded my pictures onto Instagram as part of this I also wanted to accompany it with a post as I have never really talked about my life pre Hip Replacements. I wrote a blog a few years ago which was more about my experience after my hip replacements and how going through that affected me. It might sound silly to some but, I’ve never really felt comfortable talking about my life when I suffered badly with arthritis. I’m one of those people where I always try to be positive and think “well it could be a lot worse” and I feel like me talking about it is somehow going to offend people who are going through what I would deem a worse situation. But that’s the thing with Arthritis it can really take over your life and l found not everyone understands how bad or deteriorating it can be. I personally felt like after my operation I didn’t have the right to talk about it anymore as it wasn’t as big of an impact afterwards. However, when I heard about this campaign and the need to make people more aware of how painful it can be physically and mentally, I wanted to share my story. I’m going to give a brief intro to how mine started and then I think just bullet point the certain aspects of having Arthritis which I hated;
So, I’ll start with when I was a just a baby around 2-3 years old I did go through a stage where I didn’t want to walk and all I would do is crawl (the doctors have said this was likely to be related to arthritis). As I got older and starting to walk, I would walk slightly off balance or lean forward. The earliest sign I personally remember was when I was swimming and when I did breast stroke (you know the one where you swim like a frog) I could only kick one of my legs out, the other one just wouldn’t want to go out properly! As well as this I used to do gymnastics and it is safe to say I was nowhere near as flexible as the other girls, I couldn’t even cross my legs! So, my mum took me to a few doctors and physiotherapist around the age of 10-12. I got a lot of different diagnoses at first, one doctor looked at my x-ray and said I was fine, that I’d grow out of my funny walk and one kicking leg. One specialist said I had one leg slightly longer than the other, which definitely wasn’t correct and then another hospital took some blood tests and said that it was an autoimmune system type disease. Now all of these were very confusing to me because nothing was ever set and I didn’t know what was wrong with me, which is something I really struggled with because at the age I was I just wanted to be normal like everybody else. From about the age of 13 this is when I started to get severe pain in both my hips which gradually got worse over two years to the point where after being out moving all day I just couldn’t physically manage it, and so sometimes would go out in a wheelchair to ease the pain. So long and short of it after various MRI’s and CT scans and being referred to the amazing consultants up at UCH London who specialised in young person’s (Juvenile) arthritis, I was diagnosed with both osteoarthritis and rheumatoid; basically, my hips were useless. I still have arthritis in my lower back however, fingers crossed, I am yet to experience a bad flare up with it so I hope it will never get as bad as the hips did. Now you know the back story let’s get on to the bullet points;
The Medication: Such a big part of suffering with the condition is the medication that you must take for the pain and when taking such strong medications from the age of 13-16 it’s another part to having this disease which impacts on your ordinary life. Because at first we didn’t know what was actually wrong with me a lot of the medication I was taking was for the pain such as Naproxen, which then went on to Indomethacin etc. to some that may not seem that bad but, there would not be a week that went by where I wouldn’t be taking these drugs for the pain. Then would come the side effects, I remember Indomethacin being the worst, making me feel so sick and dizzy that sometimes I wasn’t able to go to school more because of how ill these drugs made me feel. However then came the big dog, so once the Arthritis was actually diagnosed around the age of 14 I was prescribed a drug called Methotrexate, this is a drug that is also used as a chemotherapy drug but also mostly common for arthritis sufferers as it is supposed to help combat autoimmune diseases. I was given 6 tiny pills a week to swallow along with a side of folic acid. The folic acid didn’t do much as I remember I used to have dreams of someone punching me in the stomach because of the discomfort from the pills and how sick they made me feel for days after, it was horrible. After a while these pills turned into self-injecting the methotrexate drug into my stomach or my leg in which it was in this yellow liquid form and I pinched my skin together, pressed the button and in the needle would go. These made me feel horrendously queasy and sometimes I would vomit so, after a while I asked to go back on the pills. After this and especially after my operation I just stopped taking the medication and once speaking with the doctors it was decided I could come off all the drugs! I sometimes must take the occasional pain killer for back pain, but I appreciate how lucky I am not to be on such strong medication anymore and hope It will last that way.
Side note: Ok, I didn’t expect to already be on just over a thousand words and the last thing I want to do is drag this out as I want to get my main points across so, the next topic below is going to be about how Arthritis affected me socially as this along with the above subject on medication is how it really affected my life and writing this makes me realise what an isolating condition this is because of lots of things I missed out on. Along with the physical pains it did affect me mentally especially when I was at a time in my life where I was going through so many other changes and new experiences, as everyone is at the age of 14, I just wanted to be ordinary.
Socially: Relationships were something I struggled with when suffering badly with the condition. I started seeing someone at the age of 16 that was who I eventually lost my virginity too and it would be weird for me to sit here and say that I expected to be having amazing sex at 16 because that is just not the case as there is a lot to learn no matter what you watch online (TMI, I don’t care). But l do remember sex being painful and struggling in certain positions because of the pain in my hips. I even remember screaming when the guy I was in a relationship with thrusted a bit too much down on my legs and sweet Jesus did that hurt! That’s something that’s not changed much since having my hips done, I still get very self-conscious although I have learnt what works best for me but, it’s just trying to teach the other person that.
A lot of the reasons I really struggled with having Arthritis growing up was because nobody around me, my friends, seemed to get it. I don’t think they quite understood how I wasn’t poorly all the time when it first started to really affect me. Near the last year or so before my op it did get to the point where I was mainly home tutored, rarely went to school, long days out I would be in my wheel chair and I guess that was easier to understand for my friends because they themselves could physically see it. I mean kids picked up on the fact there was something quite not right with me, people were always commenting on the way I walked. One girl described me as “walking like I’d shit myself” and as mentioned in my previous blog some kids referred to me as a ‘granny’.
It’s like those teen American movies you watch which are all about being different, but at the time it felt like the worst time in life to be different because I would rather be unnoticed than noticed for having something wrong with me. Arthritis effected some of my friendships and I found it hard that they didn’t understand, they would tend to get annoyed because I wouldn’t be in school but not necessarily understand how much pain I was in or how sick my medication was making me feel. It became a somewhat running joke at the time ‘Oh Evie & her hips’ and I would join in but in all honesty it pissed me off because it wasn’t a joke and I just knew if they could feel what I was feeling it would make them think different but it’s hard at that age to explain it when you don’t even understand yourself and that’s sometimes the most annoying problem with Arthritis is how up and down it can be which then tends to confuse others but, hopefully with more awareness and more people sharing there stories overtime we will have more of an understanding for the condition and the issues it can bring.
I know this was rather a long post, longer than I had planned but it’s the first time I have properly wrote about my experiences of dealing with the big A whilst also learning about so much else whilst growing up, I am so grateful that I was in a position where I eventually got my operation because it honestly did change my life around and writing this blog certainly makes me realise this. There are so many others out there though who are still struggling and need more understanding and compassion towards this disease and that it is not just something you get when you are nearing your time at the end of life, it can affect us from the very beginning. Just remember just because you can’t see that something is there doesn’t mean that that person isn’t fighting some kind of battle. Even if you can’t always understand just try, be supportive and most importantly be kind.
See you soon.