Over recent months I have found it very interesting reading your Blogs from all over the world and to compare treatment of RA between countries. It’s quite amazing how it differs, but our problems all end up with much the same results. We all have pain to a greater or lesser (for the fortunate ones ) degree which comes with its accompanying sleeplessness. Our hands and feet hurt, we can’t do up our buttons or zips and our bad language expands accordingly ! There was a time when I just used to mutter to myself, but now I find that I can curse and swear like a navvy!
The biggest problem we all seem to have is weight gain – yes I have to admit that in my youth I dieted with the best of them, and really rather hoped for a small wasting disease that would come and go and leave me supple and willowy and beautiful, of course ! Then, of late, I hoped that with advancing years would come a matching weight loss from being ‘older’. Now I read that people who loose weight in old age are probably in need of a medical check up rather than a new wardrobe !
So what did I get ? I got RA for my sins and 10+ years of being operated on. First my hip replacement in 2005, followed by Costachondritis and a Knee Arthroscopy which, of course, made my knee much worse so that it had to be replaced in 2011. The in between years were filled with such joys as a Gallbladder operation (when they never considered Costachondritis, despite the fact that I told them repeatedly that I had RA)and several bouts of skin cancer courtesy of the Methotrexate I was on ! My knee operation was botched forcing me, yet again, to take to my wheelchair and when I did eventually stagger up and try and walk in a suave sophisticated manner, my foot broke from the uneven weight put on it. I kept going to the hospitals and X-ray Units and yes, they told me, its broken – but nobody would touch it. So for one and a half years I had a broken foot and it took me this length of time to find a brilliant foot specialist who fixed it for me with titanium implants and broke the news to me that the other foot was breaking too. In between my recovery I tripped over my own feet (foot?) and broke my shoulder and my wrist, had my cataracts removed so I could see where I was not going and then had the second foot done in 2015. I spent endless hours in bed and in a wheelchair and instead of wasting away, I ‘comfort’ ate anything I could get my greedy hands on! I also was given a lot of steroids to help the inevitable flare-ups and I found that these gave me a craving for all things sweet, so when the end finally came in sight (with just a wee touch more of skin cancer and a blood clot from sitting down so much), I emerged rather pear-shaped from the whole experience !
Over here in Ireland one only gets steroids if your flare up is massive. I get Biologics and Methotrexate, plus a load of tablets to stem the side effects from what they first gave you ! I can walk, but not very far and not very fast – so am unlikely to loose weight this way ! I really try to stick to a Mediterranean diet, but can often be found sneaking out to the fridge in the middle of the night for just a square of dark chocolate, which really wont do me any harm, will it ??!
The worst side effect of taking Humira is that it made me dislike wine (tastes funny) and spirits are just a No-No. I have gone off red meat to the point of almost becoming a vegetarian, which has to be good, isn’t it, and I have given all of the above a really good try, especially the wine! Alas, to no effect – I’m still pear shaped and this year I shall be 71. Is it worth me now becoming lithe and willowy or should I just give in gracefully ? I leave that conundrum up to you !