A Message of Hope
I wanted to post this here, because I think it may help someone with RA who hasn't yet lost all hope to the disease. I very rarely read stories about RA, myself, as I usually won't allow myself to see it as anything more than a temporary setback. Often, reading about other peoples struggles simply brings to light that this might be something that won't go away; and I'm not ready to believe that.
Four years ago, I was a picture of health. Okay, so, I didn't really exercise all that much and I had vitiligo, but I've never worried about either. I've never smoked, very rarely drink alcohol (maybe one glass at Christmas or the rare barbeque) and I ate very well. Then, one day, I awoke to a swollen left knee and a lot of pain.
Over the course of several months, the swelling would come and go. Then it wouldn't go. I started to get swelling elsewhere, such as in my fingers, wrists, toes, feet and jaw. The jaw was the worst. I would experience agonising toothache in every tooth on one side of my face. I wouldn't be able to fully close my jaw, and eating was near impossible. Luckily, those bouts of jaw inflammation would only last a day or so at a time.
Later that year, a Rheumatologist officially gave me a diagnosis of RA. Great! Having never had so much as asthma or even a sleepless night, I now had a chronic disease. Not good.
At first, I tried to fight this condition with nutrition. The Rheumatologist put me on Methotrexate, but I didn't really fancy poisoning my body. However, it didn't exactly go to plan, as my flares simply increased. Then, by late 2015, I was unable to walk at all. I was completely bed-ridden. I couldn't even manage to reach the bathroom which was adjacent to my bedroom. I had to store food around my bed and keep empty bottles for those moments that I had to go to the toilet. I was in bad shape. My body weight had dropped from 14st-something to 10st 6lbs and I was in pain!
In March of last year, I was able to get to see my Rheumatologist. I arrived at the hospital in a wheelchair I'd purchased. There was no chance of getting there any other way. On seeing me, the Rheumy exclaimed that there was just no possible way he could let me go home. I was to remain in hospital, so remain I did. I was there for eight weeks!
During my time in hospital, I was trialed on different drugs and my bloods were monitored. It was evident I didn't tolerate many of the drugs very well. I kept having various spikes in my liver results and the doctors weren't happy. So, they put me on Humira. I had numerous x-rays taken. My left knee looked like a dry-stone wall. The upper and lower bones were pressed together with no gaps and there was clear bone degradation. The doctors claimed I had no cartilage left, as it had been eaten away by the inflammation. I was offered a new knee there and then (obviously under general anaesthetic), but I wouldn't have it. I wanted to see how good I could get my knee before considering that. I was also given an endoscopy to check for any coeliac damage, of which there was none. I was showing signs of the coeliac antibody (I believe) in my bloods, so it was expected something was going on internally with regards to gluten, but luckily all seemed healthy there. Then, mid-last year, I was released and sent home.
At first, I was still confined to my wheelchair. I had started physiotherapy while in hospital and continued this at home on my own, and once a week with the therapist. I was improving, but I still went to work in my wheelchair. Thankfully, the transit system caters for people in manual wheelchairs. I was also grateful for a bit of upper-body exercise, having been in bed for so long.
By October last year, I was finally limping around without the chair, using it only for longer journeys and, by the new year, I was seemingly walking normally.
In June of this year, I started attending the gym. I have not been able to run since getting RA. The impact on my knee is simply too uncomfortable. To be honest, I think a lot of it is psychological, as I don't really feel pain there, now. It's just an odd feeling. However, I am able to do over 10km in 20 minutes on the elliptical machine and I have been doing heavy weights (I used to love body building in my younger years). The way I saw it, there are people with joints in worse condition than mine who keep mobile through pure strength and discipline. If they can do it, so can I. So, I have. I am now back to 14st 5lbs, feeling fitter than I've felt in 20 years, and I've not had a flare, now, in four months. I eat super healthy, not touching anything processed, high in sugar or red meat. I mostly eat beans, veg, fruit and various vegetable protein supplements. I feel great!
About a month ago, I revisited my Rheumatologist. I wanted to see what he thought of my recovery. Needless to say, he was almost speechless. He claims to have another patient who was in a similar state to me, and he still isn't walking, which he put down to one thing; my sheer positive attitude towards my disease.
While I was in hospital, I always smiled, attempted every exam, exercise and trial offered to me with sheer determination and I have maintained an attitude that I will not let RA get the better of me. That, he says, is why I am now seemingly recovered. Well, probably that and a little help from the drugs...
My point is, don't let RA get the better of you. Stay positive. Keep on top of it mentally. I really do know how it feels when you are at your lowest and the pain is great, but keep that smile on your face and approach it head on. I promise you'll see a brighter future with that attitude than if you allow it to pull you down.
If I can do it, anyone can.
When was your last flare?