I think I can... I think I can... I think I - of course ALS will get the last word.
This is the story of me hanging on to some independence. Since I can no longer walk, I use my transfer chair to go from bed to shower, toilet, and vanity sink where my husband is getting used to blowdrying my hair, and we're starting on make-up. I've always kept it simple so he won't have to learn false lashes and the smoky eye. If he makes a mistake with eyeliner he can smear and we'll call it a smoky eye. Of course he'll need to do the other eye just so. I'm still managing all this stuff on my own but I feel the weakness more and more. Those make-up brushes sure are getting heavier.
I got the transfer chair the same day I got the rollator from my lovely local ALS coordinator. The chair was to stay in the trunk just in case we ended up somewhere with a lot of walking. I remember saying to myself, "it will be a long time befrore I ever need that." For those who don't know, the difference between a transfer chair and a wheelcair is the transfer chair has four small wheels. You can't push wheels with your hands like a regular wheelchair.
The first time it was pulled out is when I broke my toe, you guessed it, trying to walk. I broke a middle toe on my good side. I spent about 10 days relying on this chair. If somebody pushes you to the middle of a room, you're stuck. Nothing to grab on to to pull yourself. The thought of that bothered me. I tried to keep my cane with me to latch on to things just in case. Now I can use my left leg for support transfering, but then I couldn't put any weight on it. this was about five months ago. Once I was in the chair I pulled myself using the bed, doors, anything I could. Now I can use my left leg to help get on and off, but I can tell a huge difference in my arm strength. more so right than left as usual. The comforting thing about using the chair then was knowing it was temporary. I knew as soon as I could bare weight on that foot again I'd be back in action. I was.
Here I am now with that chair being, what I feel is my last dance with independence. I have a love/hate relationship with it. Anybody is welcome to sit in it when visiting me as long as they put it back in my reach right away. I still don't leave the walls of my bedroom/bathroom. I only get glimpses of the house I used to scurry through with ease. I get that as I'm being carried fireman style down to the garage door.
Tony is worried about me, which I appreciate, but frustrates me. I'm usually up all night. as soon as I think he's in the deepest sleep ever I twirl on my left foot into the chair from bed and start pulling with arms and scooting with left foot to piss. Damn near every time, he sits straight up, "What are you doing? You're going to hurt yourself, I asked you to wake me up!" I don't want to have to wake him up. A simple piss is the easiest thing after making it to the bathroom, I just swirl on toilet. when finished I swirl back on chair. I don't want to wake him for that. It only gets hard doing it often. It starts hurting my arms and left leg because of weakness. My solution was to cut my fluid by about 80% which I knew was a bad decision, but then, I'm not known for my good decisions. Seriously though it is already getting harder to drink just water. I'm starting to struggle with fluid intake chair or not.
The shower, a simple shower is what wipes me out. We just have a stand-up shower in our room. Shower time sucks ass, but at least it doesn't stink. First I have to make the big decision of what to wear to get back in bed. Then tony takes shower doors off, makes sure my shower chair is clean and warm by running hot water on it. he gets my washcloth, soap, shamppoo, conditioner, razor shaving cream and a towel on holder to wipe my face if needed. This all must be put back nicely after shower in case of a house showing. The last thing is getting my little faithful helper's towel folded for her. She sits in there in that steamy room just in case something goes wrong. She's so sweet. All 7lbs of her, my tough little toy poodle, Abby. Then Tony closes the door, puts baby moniter right outside and goes to office til I'm finished. I'm still washing my own hair and body completely by myself. That may not seem like a luxury to you, but it means the world to me.
After shower, is body lotion, hair, and make-up if leaving. Tony reasembles the bathroom, shower doors and all. Then I'm completely wiped out and back to the bed Tony always has fixed and fluffed for me. I make it back and I tell abby all my secrets and fears. I love her so much.
That's the story of my last dance with indepenence.
Until next time, take care,
April
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