How is it that a retired, disabled ALS patient trapped in a wheelchair with nothing but time on his hands can find himself so busy, with a schedule so packed that he cannot accomplish it, with so much of it put off because it simply cannot fit in a day? I find myself continually surprised that the activities of daily living, the dressing and undressing, the cooking and eating and tidying, the taking out and putting away, all take up far more time than they used to. On top of that I have an active social schedule which seems to find me rushing here or there on a regular basis. When did I get this busy?
Of course the truth of the matter is that I am no busier than I have been in the past. There are no more things in my schedule, nor are there more things which need doing. The reality is that those tasks and meetings and appointments and such all take longer now. There is no more popping out of the truck to pick something up in the store. There is no more stopping by at the grocery store while I head off to an appointment. Each and every one of these things now takes longer and requires a lot more planning and forethought.
The wheelchair is a good part of this additional time, particularly getting it in and out of the truck. Add to that the challenge of getting things in and out of cupboards above while seated below. Consider the additional moments it takes to do almost anything and suddenly a day which is empty for an able-bodied person becomes full for someone in a wheelchair. It takes time to position, time to wheel, extra lifts and placements; it all takes just a few moments longer.
Consider the act of having a shower. For most people, it involves walking into the bathroom, disrobing, stepping into the shower, showering, stepping out, toweling off, and getting dressed. It's almost like that for me with a couple of notable exceptions. First of all, I cannot simply walk into the bathroom and get undressed. Thanks to the wheelchair, I can roll into the bathroom but disrobing while seated is a much longer affair. Then I don't just step into the shower; I transfer to my shower seat, a process that involves careful positioning of my wheelchair, carefully transferring my rear end from one seat to another, then sliding into the shower and finally re-positioning my wheelchair so it's not in there with me. And that is just for starters! It simply takes a lot longer than a "normal" shower.
Another factor is the amount of sleep I need these days, usually somewhere between 10 and 12 hours a night. That means my days are substantially shorter than they have been in the past. This morning I got up early, at 9:30 AM, and I am already tired enough that I would happily return to bed. I just need more rest, and that means less time for daily activities; time I once had is time I no longer have. All in all, it means shorter days and even though there are fewer things to be done, they just take longer.
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