I sleep on my side to facilitate breathing. I lie on my hip and the bone digs into the flesh beneath it, causing the bottom leg to go all tingley. In the morning the side I’ve slept on most will feel like I’ve run 5 miles becoming stiff and sore. Calf muscles cramp and over a short time shrink noticably ~ I’ve lost 2 inches on my left calf this year. My once shapely and enviable calves have an odd angled sloping appearance.
Where I used to have muscle I have tendons and thin whimpy muscles. Though I weigh less than I have in almost 20 years I have a pouchy belly. The last time I was at this weight I was ripped! Now I feel like I’m skin, bones veins and nerves with the remnants of my muscles hanging on for dear life. There’s not enough muscle to protect the nerves from being compressed by my body weight as I lay or sit down causing hips and arms to fall asleep…even though I angle the pillows and stack them up to elevate my upper body for better breathing. I want a pace maker to stimulate my diaphram…I wonder what the wait is to have that experimental procedure or who I need to know?
My hands are the most noticible new weakness: opening doors is a chore and elevator buttons take a knuckle or palm not a finger now. Typing is tricky. opening mail is impossible and turning pages of my beloved books is an adventure. I just started dropping books repeatedly when I read as my hands can’t hold them steady even against a pillow. I am in a race to write …get it down get it down…I know there are new ways to type with toes and I practice hoping my legs will outlast my arms. Noticing this can can spin me into overwhelm and I have to ratchet up my little miss empowered mojo to keep from going back to bed and staying there.
Soon I’ll need all my meals prepared by someone else, and fed to me as well. Last week I was in a restaurant and the soup spoon was too heavy for me to use through the whole bowl, it exhausted my hand! Time for packing plastc portable utensils. My walk has become a kind of march, where I depend on my stronger right leg as I slap the left one down for a step forward, Left Left Left -right Left! Like a baby giraffe…at 5′3” there should be nothing giraffe like about me. I have been unsteady on my feet in general, using the walls and tables in my apartment for support. Getting up from the couch is now an occassion for concentrated effort. My indepenent days are coming to an end.
The % of energy it takes just to navigate through a day is growing to the point where I must judiciously parcel out my time and I often cannot make social engagements at the day’s end. Now when I have really good ideas I look to see who I can give them too lest they be lost all together. All my trips must have more than 1 purpose whether it’s travel or a trip to the office 5 blocks away, or it’s just not worth going out. So this week I go to Detroit to plan a fundraiser, train a program leader for the Master Plan and see an alternative Doctor…Last year at this time I felt great. I had just done a rawfood cleanse in May and HAD STOPPED THE PROGRESSION OF MY ILLNESS. All the muscle twitching was gone, I am wondering if I can turn this damn thing around again…
I gave up coffee this week so I can go to the 90% raw food again with no headaches from caffiene withdrawal. I think it’s time to find out!
