Inspired by “The Spoon Theory” I am going to put it out there, just how an average day starts for me these days.
Do not read this with pity; don’t feel sorry for me because I don’t.
I am very lucky; my life could be a lot worse
No matter what time I may have fallen asleep, (Usually some time between 2 and 4am) I wake up between 8am and 9am. Now waking up is a whole different experience than it used to be. The first thing I do is to open my eyes, sometimes they open fine but more often than not it hurts to open them for the first couple of times. Then I try and focus on the clock, again it usually takes a couple tries.
Now I flex my fingers, on both hands. Sometimes I have to push them with the palm of my opposite hand to get them moving. It hurts but they get moving and the pain subsides. Now comes the scary part. First I move my feet, one at a time, usually there isn’t any pain at least. Now I bend my legs, all the time thinking that the odds are, one morning sometime in the future they are not going to work.
Now all seems well so its time to actually get out of bed. Half rolling into a sitting position on the side of the bed, I then stand up very slowly. Sometimes one or both legs will start buzzing. That’s a hard one to explain, as it really feels like your leg is vibrating at about 20 Hz. Once the legs settle I can shuffle off to the bathroom for the morning relief. And then back to the bedroom to get my needle, look in the book to remember where on my body is today’s injection site, and either I load the auto injector for the hard to reach places or just inject myself manually.
Now I can get dressed. Leaning against the wall, with one hand on the wall for balance, with a lot of effort one leg, then a short pause make sure I am still stable against the wall and the other leg. The shirt is less complicated and relatively normal, except for tucking it in. This depends on how flexible the hands are by this time.
So by now everything seems to be flexible and operating within semi normal ranges, its off to go down stairs. I stop at the top of the stairs, first to just make sure I can stand still and look down the stairs without feeling dizzy or unstable. Next is to check there is nothing on the stairs I might trip on. (Including the cats) Now I think about moving my right foot to the first step look and make sure it is indeed on the step, then the left foot. If it’s a good day the left foot goes to the following step as anyone does. If it’s not a good day then both feet see each step together all the way down.
Now I head for the kitchen, on the good days I give the cats their treats, let the dog out, and start breakfast. On the not so good days I skip breakfast and head for the couch for a short rest first. It has taken the best part of an hour to get this far. You may notice I have yet to brush my hair, brush my teeth or shower. These I leave to later in the day so I don’t have to have a nap an hour after I got up.
LINK TO THE SPOON THEORY
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