I’ve convinced myself somehow that the personal is less important than the political. Or rather, tht which worries me is not something which will worry you, as our conditions are different, and if I can’t make it universal, I try to ignore it. Not so.
On the personal level, I have been losing a lot of blood, a large amount with signs of internal bleeding every few days. My inability to create blood is probably what causes the waves of weakness and passing out. I am in fear, so often that I will lie down to nap and wake 18, 24 or 48 hours later. I worry about the effect the heat has in draining me. And about the strain on muscles and whether it is better to take a pain pill and ‘power through’ or don’t and risk fatigue.
Time, and the passing of time is something that is fluid for me. There is no neat 24 hours in a day. What I do, I do slowly, sometimes four times slower than others, sometimes slower than that. And I can do something for an hour or two, and then I need to rest for three or four hours. Able bodied people don’t get it. Rarely do they ‘get’ fatigue, much less passing out, and doing things slower is something to ‘remember’, not something that is lived. I find myself constantly pushed by the expectations of others, whether it is Linda or someone coming to assist in care. The assumption is that I will be well enough to talk, that I will be well enough if I can’t talk to repeat what I said five or six times because they stand and go “What?”
I long for the person who would slow to my time. Someone who would want to spend time as I have to, not as I choose to (and the majority seem to be unable to understand that idea – that I am fatigued, or slow, or pass out not because I want to inconvenience them, but because I have no other choice). There is the ‘I expect you to be at your best’ when the person pops in, there is the ‘I have no idea what condition you will be in, so I’ll hang back” and there is the ‘I’ll come back if you seem too fatigued.” Often the person thinks they are in the same time scale as I am, as they go to reading a book, or doing something on the internet. But those actions are done ‘at speed’ and coming out of that to my speed is often difficult, or that I am ready at 1:00 am meets with, ‘but it’s time to sleep.’ Errr, except I have slept, and have waited two days for you to do xxxxx with me, and now I finally have the energy.
I can understand the whole, ‘Hey this is when I sleep’ thing. But if they choose to not be part of when I am active and alert, then there should be no expectation that when I do go to sleep, after being active until 4:00 am, I will awake with any sort of energy. It is kind of like space and how meteorites don’t have showers through the atmosphere based on the best night for me – they do what they do, and I can join that or not. But to get frustrated because they won’t act according to my wishes, that seems absurd. Yet to expect that very action from people who are experiencing aything from depression to chronic illnesses is almost standard. Areas tend to beat at one pace and everything from the times stores are open to social engagements are built around that. For those who fall out of time, it isn’t that you are watching others pass by, but that others either choose not to or are incapable of synching with you (or me).
Good thing this computer age, so I can leave a thought, and it can be read, or replied to at your own pace.
3 hours ago