I'm sitting here tonight trying to come to terms with the progressive loss of ability to use my hands. It doesn't seem like such a big thing...the only real issue is the misreporting of touch sensation, so that instead of feeling touch, I feel fire and abrasion. They work perfectly fine...it just becomes progressively more than I can bear to continue to use them.
I've already lost the ability to use a computer mouse. It's dropped from taking about two hours for the pain to ravage my hands down to more like two minutes. I tried using one just before sitting down to this post, and the lightest hold spread abrasion/fire feelings around the edges of my palm. I just can't do it at all anymore, and that is a fairly vicious blow.
It's stolen the ability to play computer games from me. I can't use mousekeys for gaming - it's too slow and inaccurate, and I have no other real solutions. Considering that this was one of my favourite pastimes, and one for which I built my own gaming keypad, it's actually a fairly devastating loss. It's stealing the ability to do crochet - the hooks hurt the fingertips and backs of the palms, though at this point I'm still persisting in short bursts. It's stealing the ability to pat my dogs - the pressure and rubbing burns in the same way chilli on the lips burns. Sometimes, it even steals the ability to wear clothing - the forearms feel badly scalded, and the soft brush of cloth on them feels like someone running an open flame across the skin.
I don't know what to do. I'm lost.I'm already on Lyrica for nerve pain - it keeps rising above the relief that Lyrica can give. I'm on the mid-level dose...but the next step really is to go to max dose - and then what? What do I do if it rises above it again? I got almost 2 weeks of peace when starting the mid-level dose of Lyrica - it was working and I was pain free. It felt amazing. And then the nerve pain in my hands started rising above that, and within a week I had to stop using a computer mouse at work entirely. Tramadol used to help...but it's losing effectiveness too. A max dose of Tramadol now typically takes 3 hours to have any effect. Where do I go from there?
The only reason I can still type is because I type on my fingernails, and my keyboard is scalloped out in a way that makes that easier to do. But I'm losing the ability to use the palm rests on the keyboard, and the arm movement makes my clothes shift and move on my arms activating the scalding feelings on the forearms. It leaves me wondering just how long I'm going to be able to continue to type...and if I lose that, I've lost my career.
My brain works fine. My body works. My hands move, and grip and all that - they function perfectly well. It just becomes excruciatingly painful to use them...and I've learned that using them despite the pain just leads to greater and more extensive pain that no medication will control. That makes it very hard to just ignore it and push on anyway - which has been my default reaction to meaningless pain in the past. Because this pain is meaningless - there is no real injury that it's reporting, nothing is actually causing damage. Continuing an activity won't result in further damage to limb. Nothing wrong, but my immune system deciding to attack the nerves in the skin. It's internal, not external - and there's not a damn thing I can do about it.
I feel desperate, hopeless.
I'm not coping well with the losses...I had been doing ok, trying my best to find ways to work around it, to stay functional, to stay able. But in reality, I can't. It's too intrusive and now affects everything I try to do.
I go for a walk - and if my hands brush my clothing the sides of my hands start to burn like chilli burns my lips. The same thing happens when I rub my dog's ears - and try telling a pair of 7 month old puppies that you can't pat them anymore...they can't understand what's changed. I try to open a bottle of milk - and the bottle lid feels like it's ripping all the skin off my fingers and bruising them. I pick up cup of tea - and if I hold it by the handle my fingers feel abraded where they're touching the handle, or my hand burns intensely if I try to wrap my fingers around the cup instead because the heat of the tea sets them off (I do have some special cups coming from ebay that might help with this part at least - I was desperate enough to spend $50 on a might). If my dog licks my hand, it feels like hot battery acid being swiped across the skin with sandpaper. When I wake, my palms sting as if I'd just slapped something. That's becoming the default "minimum" now, the best it gets during the day. Holding a computer mouse feels like I've skidded on asphalt - the skin has been abraded away and the palms are burning and stinging as a result.
So, it's reached the point of being a disability...I can't use my hands for so many everyday things.
That feels shocking, strange, unfathomable.
It's not like my hands don't work. They just...hurt, strangely and intrusively and unrelentingly. And I don't have anything I can use that is effective enough to properly control it. Thinking of myself as not just sick, but becoming truly disabled...is a very hard blow to take.
When I first got diagnosed, and started medication, I saw a future. There was a path ahead, and medication that could help - and I felt better than I had for decades. Now that future has been scorched away with the burning in my hands. I think it's almost harder to take that way...to get the glimpse of what might have been, what should have been if not for having a broken immune system, and then to have it snatched away again. I know better now what it is that I'm missing out on, what I have always missed out on.
It hurts...both physically and emotionally.