Perhaps more than anything, chronic illness robs you of time. You don't usually lose solid days or weeks, but those days and weeks get a lot shorter. Of course there are spells where time drags – usually at night, usually during the last twenty minutes of the period between doses of painkiller. But the shape of time is different; irregular, kind of vague at the edges. You find yourself with a lot of time on your hands, but only to watch it slip through your fingers.
Sleep becomes ravenous. It eats into your day, then takes random bites out of the middle. Often there are hours that pass where it is nibbling, non-committal, and even then there's nothing you can do but lie there, fading in and fading out. And even without sleep, you can do so little. Time flies whether or not your having fun.
Handicrafts are a symptom of incapacitating chronic illness. When time is so short, one is compelled to use it productively. So having no more useful purpose, you make crap. You sew, you make cards, you paint objects, you make all kinds of nonsense. I string beads sometimes; that is completely and utterly banal. Okay, so I choose which beads go nice with which others, in what order, but that's a three second creative process followed by, I don't know, hours if I make enough mistakes and drop them all once or twice (which I generally do). It's not about passing the time, but marking it. Giving these hours some small significance against all the other hours where nothing happens.
Meanwhile, you become an unfaithful friend. Perhaps not quite unfaithful. Only the amount you care weighs heavily against amount you have contact with people. And you don't even always know it, because the shape of time is misleading. You think you only spoke to them last week when in fact a month has passed. And because do you more thinking and caring that you do writing or phoning, you imagine you have been in contact when you haven't at all. My oldest friend sent a letter in June to my address in Whitby, five months after I'd moved out. But I was sure I'd written. I'm sure I'd told her all about the move, the flood, everything. I hadn't. My oldest friend.
So you resign yourself to a shorter life. Less time. Less stuff in it. And you think, disasters not withstanding, at least you lose the time gradually. At least you get a good number of goodnight kisses. At least you get to watch events unfurl over a good long period of time, rather than missing half of it completely. And at least you know the score. You know it's all very precious. And when you have a little time, a little useful time, a day when you do something, a day distinguished in some small way - such days make you feel like you have more than your fair share.
Ouch. I can see how that would have thrown you.
On the plus side, friends know your time and energy is precious and appreciate it more when you choose to spend it on them specifically. There's a big difference between a normie's "let's go out tonight, I've got nothing better to do" and a lurgy-ified "let's go out tonight, I've spent all day resting and made sure that I don't have anything on that'll warrant me leaving the flat or needing my brain tomorrow."
I have felt that way about time, and my limitations are just about what my head can take in, rather than what my body can do. How can time vary so much, and yet watches and clocks still work on universal principals?
I remember cross stitching in junior school as very soothing to a chaotic time. That craft, I have since discovered, was an educational theory used to help brain development (!). I have some very precious colourful crafts made by my Bump that will always represent the positive that was around the bed based months.
And friends; every few days or so, I get a card from a faithful friend who knows me well, but of course the date stamps shows a month has, in fact, moved on since she last let me know she knows and cares. Why it is easier for me to blog than contact her, I know is because here I have some sense of getting a handle on the passage of time, as it remains here recorded.
I really like this post as it articulates many of my experiences. I find that the time when I am waiting for painkiller to kick in/sleep is when I plan all the people I will write/email. Of course with the focus of morning: dressing, washing, eating, etc - the intention is less often remembered (rather added to a "when I have time" list).
I am glad your friend wrote you though - a true friend.
I have yet to feel like I have more than my share, but then, I never liked sleeping before.
How very curious. I assumed that my lack of contact with my pals and the speedy passage of time was due to aging.
...and there was me assuming my lack of contact with friends was because I haven't got any!!
Your post beautifully signifies everything and more that my tiny jumbled up pea sized brain could ever hope for. Right off to have a rest now.
Zombierubberduckie (who is too stupid to remember her own google password to make this comment non -anonymous).
Goldfish, this is a great post! I'd forgotten about the strange telescoping of time that goes on in such states.
BTW, the mutants are everywhere -- TAG!
I read this post the day before yesterday but needed time to digest it. You're very eloquent.
I've been 'at home' to visitors and callers for 7 years now and sometimes I wonder where that time has all gone. A lot of it has passed whilst I was 'a bed: feeling poorly, asleep etc.
I then find that when I have what I call 'useful time' I have to use it for useful things and it is a bitter lesson that this is not always helpful to my feeling of well-being. I've now learnt that time can be used for enjoyable stuff too and that time spent this way seems to pass in a much more flowing way.
Friends --- well chronic illness changes all that. You certainly find out if you have any and how reliable they are, though there is also an onus on oneself to mantain a realtionship -- poorly or not, since others have their own lives and committments too
apologise right now as this is really off topic and i no you are a buesy lil goldfish!
but you have just been tagged (blame Zepher)
its all a bit of fun really check out my blog to find out more
I have just begun attending "open" workshops for people with various problems.
As an Attendee instead of (as used to be a few years back) a Supervisor.
After years of being assessed as being Brain Injured and Cognitively impaired (Stuck gears?) Acident Insurance Clerks telling me that experts have no idea of what they are talking about and I am fine or that i read about things on the itnerrent and convinced peopel thats what was wrong with me.
So finding myself socially and occupationally forced into isolation by the insurocorps actions
I have at last jumped the fence.
Without letting on what I have been assessed as being.
Which obviously has the "Staff" greatly puzzled.
As to whether I do have problems and if so how and why I have escaped the support system for so long.
Interestingly enough after onlya couple of short days the Staff are astute enough to notice that I forget to check in, leave things laying around and often after a short time have no idea of what I was doing or where I left an object.
Mind you yesterday they did not appear to notice that I forgot to stop for lunch, (needing food on time is a wee foible I have).
Interesting times hopefully I can find some stuff for my blog from all this, however I have to be caregul the insurance clerks don't try and block me from attending the workshops and thereby show how they have fudged the books to show I am fine.
Tis a weird world sometimes and people say I am the one with brain damage!
I never thought about handicrafts being a mark of my illness. I do cross stitch and I paint, I like to build things with my hands. I tried to crochet, but I'm just not capable. Part of it is meditative. The repeatitive movement of the needle and thread calms me down, makes me focus. No more freaking out about my pain or the bad day I was having or the fact that my meds are about to run out and I can't afford a refill. It's just me and the thread and all that glorious color. Plus, it's way cheaper for me to make artwork for my walls than to go buy something.
And my aunt Vickie taught me how to cross stitch, so I always feel more connected to her somehow.
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