OK so you have RA/RD or some other autoimmune disease and there’s no point in looking back. You are here, at this point in time, and you have PAIN of one sort or another. They come together like strawberries and cream, or rather more like slugs and snails moving from one point of your body to another. Just as you think you are pain free, you try to get out of bed and back it all comes.
The trick, or the way to cope with it comes in all shapes and sizes and is different for everyone. For some it may be drugs, diets or loosing weight, or heat pads or ice packs – it really doesn’t matter as long as it WORKS for you. I’m going to bore you all and tell you what works for me starting at the top.
BRAIN FOG comes and goes and often I am told that I have totally ignored someone who was calling or waving to me. But I am fixedly concentrating on getting from a to b and my vision tunnels down to what my brain is fixed on. Sorry, but there it is !
My EYES have occasional blips. I had my cataracts done and since then I occasionally see pretty circling prisms rotating around my vision. What is slightly wrong is that they are still there if I close my eyes, so I told my Rheumatologist and she asked if I had seen an optician ? No I haven’t and this is mainly because I now just take all strange things as part of my RD ! Maybe I should, but as they are always associated with a slight headache I just go to bed and count backwards !!
Pain in my HANDS drives me scatty ! I can no longer close a fist at all, so drop most things and it hurts, really hurts when I try to pick them up. So I have a handy reacher in several rooms in the house as I can never remember where I put them! I have compression gloves which help a lot in winter and wrist supports for when I drive, but the pain in trying to do most household chores leaves me unable to do more than one chore a day – sometimes not even that ! I used to love working in the garden and still can to a certain degree. No, I can’t mow the grass or bend down far enough to weed, but I now have a long handled weed gripper that you push in over the weed, and rotate. Obviously it’s the ‘push’ and ‘rotate’ that limit me and if I try to work through the pain, then I pay for it the next day ! I find the best thing for sore hands and wrists is Arnica Oil which I massage in and which smells divine !!
My KNEES are a whole other subject ! One is OK and one is not. I had a knee replacement on it and now I can’t bend it and it hurts all the time, bearing in mind that I had it done in 2011 !! I also had a HIP replacement in 2005 and that was successful though both hips twinge a lot during the day. But bearable !
My rotten hip replacement threw my FEET out of balance and I ended up walking around with a broken foot for 18 months. Yes I went to the hospital several times and yes, they Xrayed it and said it was broken, but nobody wanted to fix it. Walking on broken glass would be one way of nicely expressing the pain until I eventually went to a brilliant foot surgeon in Dublin (300 miles from where I live !) and he told me the great news that the other foot was breaking too. So he fixed the first one with titanium implants in 2014 and the other one in 2015. So I was in a wheelchair and/or walking boots for 3 years ! But the pain endured is OK if you know it is going to be fixed and disappear – not the same thing at all with the rest of your body that can’t be fixed with an operation or drugs, or diets, or whatever.
And then, just for good measure your body throws in the FATIGUE. Before I started on Humira in 2005 I was so exhausted that I had to go back to bed about an hour after getting up ! My Humira magic juice sorted that out to a great extent, but slowly and relentlessly the fatigue is creeping back ! I tell myself that its because I’m going to be 71 this year and I should be slowing down, but in reality I act like an ancient granny and just go to bed at 7.30pm, put my heat pad on where its hurting and watch TV from the prone position !! If we have to go out of an evening, then I rest in the afternoon – that way I can make it to about 10pm.
I can’t remember back to when I didn’t have RD and life was normal, but as I said at the beginning of this article, if you have it then you are stuck with it and it’s up to you to make the best of your life in whatever way you can. Filling your somewhat foggy mind with other thoughts and being determined to enjoy living to the fullest you can is definitely the answer. Don’t moan about your lot in life, smile and do what you can. If nobody else notices it, then at least you will and also set yourself a tiny goal to achieve each day. You can succeed against all the odds – well, I’m still here as living proof and I really like that !