That’s what I am talking about. Last night the pain started.There is no position to sit with my legs to stop the pain, the burning of my knees, the deep screaming pain creeping with long spiky fingers along my leg muscles, shoulders, arms, wrists…..
And crash….the intense exhaustion that pushes me down. Fibromyalgia. I can never forget that I have it, but I do ignore it on the whole. When the flare up comes and crashes me down there is no ignoring the invasion of torture surging around my body. Blooming dramatic eh! Anybody with Fibro or CFS or ME with tell you there is no drama about it, it’s ridiculously real. Fibro Fog, heard of it? Same with CFS – the foggy confusion turning your brain thoughts into a mush. Well Mr. Nasty Fibro, Ive got Alzheimer’s you can’t get one over on me! I have strategies, and things in place for the likes of you.
Living with dementia and coping with another disability is all about managing it. I don’t take any medication for my Fibromyalgia. Yes, that’s right, zilch, nada, none. I have tried the usual Amytriptaline, Pregabalin and codeine etc, but each one has side effects. I have already talked about this before but it doesn’t hurt to go over it.
Anything that makes my dementia ‘worse’, such as the dullness of thought, confusion, woolly headedness is not something I want to mess about with. The medication for Fibro ‘wiped’ me out and I could not function. Of course I know that with time they can get better, but I don’t want to risk losing any function for however length of time. This is my choice. I once had an intravenous infusion of Lidocaine and Oh my word it was the best thing ever. ALL PAIN GONE after a few days. I could walk more, I had energy, I could be NORMAL. It lasted just under 5 weeks and then C R A S H the pain returned. Not just returned but with avengance.
To maintain this pain free normal life existence I would have to receive this infusion once every 4-5 weeks at hospital during over a couple of hours. Not just me. It doesn’t work for everyone but it did for me. The sad part is that it is not available because of funding, I was lucky to have that one time funded. One thing that came out of it was that I realised that without taking medication, my pain is maintained on a relatively even keel. I have flare ups, like now, but they are never as bad as I hear some people because I live with the same amount of pain all the time. No real relief but no mega crashes either. I just have my normal bad crashes which I have learnt to manage.
As with my dementia I do what I can when I can, and when I can’t I rest. I will cancel things if necessary and just stay at home, gently walking about when I can, sleeping a lot, and taking care of myself. I will sit and sew if my wrists will allow me to, or ‘sleep’ through films on tv.
Having dementia and a co morbidity is just a case of looking how to manage both, in a relaxed and mentally chilled way, accepting what you can do, when you can do it, and riding the storm!
As always these are just my thoughts and opinions for what its worth 🙂