Went and saw the Occ Therapist today " was referred last JUNE.
Pathetic " me, not her. I now have all sorts of contraptions to put on my hands " soft splints, metal splints and support splints " and... good grief " WHY WHY WHY was I not given finger ring splints before " what a difference in the space of a few hours " HUGE " massive " I can use my hands (kinda). They are so simple. I had silver ring splints in the USA " that was 18 years ago " and they didn’t fit my misshapen fingers any longer " these wee moulded ones I got today are JUST BRILLIANT. Bionic feet, bionic hands. I believe my hands were pain free for a few hours. Have slept a little since then (exhausted) and swelling has come back up... but oh " what a difference.
It was so good to talk to someone face to face who deals with people who struggle with fatigue and pain " I talked, she really understood " my hands could do with surgery and she believes three fingers would benefit " right now, thats not an option " but she really understood everything I felt and said. It was so weird " as she moved my left pinky finger " how it sticks out to the side " I never even noticed before that it sticks out " it was almost embarrassing " really laughed as she kept trying to align it... and it throws itself back out. NEVER EVEN NOTICED IT BEFORE. It’s like it doesn't belong on my left hand " has a life of it’s own. The right pinky is twisted " no hope for that one. She understood I’m tired and she said all the things I don’t say out loud. Like, to grate cheese hurts, to not be able to open the milk " pisses me off, not being able to move when I wake up, not being able to walk up or down the stairs without having to imitate a crab, not being able to pick up a cup without two hands, can't do up buttons, zip a coat " it’s the little things... (not every minute... just a lot right now), not so much the big things " and just the constant damn fatigue and not sleeping coz it hurts to sleep even when incredibly tired. She "got it" why I hate to ask people to do things - the frustration of it - having to rely on my little fella as a "young carer" - bloody sh!te that is. He doesn't notice it any more - I do.
She gave me some “support” gloves to wear at nite (ugh " how attractive - not that that is an issue these days) to try and reduce the hands swelling and clawing overnite (nice a?). Also, some foam wrap to put around a pen as I can’t use my hands to write.
Little things " hopefully will make a difference.
Pain’s a big issue right now which is making me lower than usual " RA and SLE are wearing me out.
So.... Marty and anyone else who has problems with finger joints... ask the OT about these! Sooner the better.
Different splints for different joints, thumb / wrist / pain levels /support.
Anyhoo.... she’s coming to see me at my home next week. She’s also contacting the “making shoes” people who I was referred to last October and still haven’t had an appointment with. That won’t be much use for the next few months with surgery on my right foot in less than a month. Who knows, maybe by the time I see them I hope to be semi walking.
Bad few days... sorry. Dunno if this will be a help or hindrance to you Marty.