A PAIN IN THE WOTSIT !

 

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 !

 

 

 

YOU ARE WHAT YOU (should not) EAT !!

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 !

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