I am still trying to get this website/blog up and running smoothly. My apologies! I had a website years ago but never had any trouble with it. I have switched to a new hosting provider but still have a few kinks to work out!! Fingers crossed!
Welcome to Ramble #1!
This post has no specific topic. It’s just a rambling of my thoughts and activities thus far today.
I slept ok but had lots of foot and leg cramps. Note to self – increase magnesium. I knit 2 rounds of a sock; new activity I’ve picked up as exercise for my hands and to pass time. I am really enjoying it!
I had a shower and now feel totally exhausted. It had been 5 days since my last one and I thought I’d better get to it unless I want to live alone‼ Hahahaha. So that’s done.
Chores I’d like to get done today are: dishes, fill out insurance forms and send off medication receipts for reimbursement, oh yeah, make something to eat. I often forget that one. Sounds easy, right? Half hour to an hour and all done, easy peasy.
Sadly, not so. All of these tasks involve my hands which are an ugly painful mess at the moment. They also require some energy. Why is there no pill for that?
I never realized how much a person uses their hands until I couldn’t anymore! One of my first symptoms was Raynaud’s and the second was a golf ball sized lump on both wrists! Talk about pain! At the beginning, pulling up my pants was torture, had to switch to sweat pants. No tying of shoes or pulling them on; slippers have become my new best friend and I wear them everywhere. Certain bathroom routines became so painful I actually limited myself‼ I can’t believe it‼
Today, although the lumps have gone down, I still have severe Raynaud’s and very sore joints in both hands and wrists. A new difficulty to add to this mix is skin tightening on both hands but more the left. I have cuts on both hands where I think the skin was stretched so tight that it has started splitting open. About 2 months ago, I had a digital ulcer on one finger. My AMAZING GP gave me 2 medications to deal with it and thankfully it cleared up‼
So … the few things that I want to get done today will take me hours, possibly the whole day, to complete. I will do a little, have a rest or even a nap, then back again. The cycle continues until I’m too exhausted to do anything and then I’m in my chair for the count!
AND … the insurance forms. It is very difficult for me to write as my fingers can’t grasp the pen right and it hurts! Anyway, they want an update, every 3 months, on my conditions. What?! I wonder what part of permanently disabled they didn’t get? They know I have medically retired from work and was found to be permanently disabled by Health Canada. Have I resumed working? Retraining? No, how about volunteering? When did I last see my doctor? Which one I wonder?! I know, I know they are just doing their job but it irks me – a constant reminder – psst you are never going back to work or your once normal life‼
Thank you, rant over and I feel a little better.
The answer seems fairly obvious. I use to hop out of bed, put the coffee on, jump into the shower, get ready for work and then off I went. I never gave it a second thought.
Today, I don’t hop or jump anywhere, I no longer work, and yes, to bathe or not to bathe requires much thought, consideration and compromise. If you have never heard of or read The Spoon Theory, read it here. Bathing requires many, many spoons for me.
Not only do I have the pain and restrictions from RA, but I also have skin tightening and itching from Scleroderma. Both are aggravated by water! So, it comes down to whether or not I think I’m smelly and dirty – of course I’m not!! I do change my clothes and still wash the obvious areas. I actually have about 2-3 showers/baths a week and I think that I’m doing well. The energy it takes to undress, bathe, sometimes shave, dry, lotion, dress, hair etc is sometimes all I can do in a day. Sad maybe, but I prefer to spend my energy doing things that give me a least a bit of joy.
When I have doctors appointments, yoga , or social get togethers, I bathe. Sometimes I resent feeling that I have to. To have a shower and go to the doctor will wipe me out for the whole day and often longer. The exception to this is if I have a long, hot bath with epsom salts. I crawl up and out of the bath (literally), put Tiger Balm on every joint and recline in my chair with heating pads. It feels great!!