Thread by @sophygurl, 1 thing I don't think folks w/out chronic illness understand is just [...]

1 thing I don't think folks w/out chronic illness understand is just how much time our illness takes from us.

Thread.

We all have the same 24 hours in a day? Hardly! (Also true for folks for all kinds of reasons - poverty, disability, care giving duties, etc.)

#neisvoid

But what I want to focus on rn is the way folks with chronic illness can end up having fewer hours in a day than other folks.

To start with, we often need more sleep than other ppl. The standard recommendation for ppl is 8 hours, but we know lots of folks get by on 6 or less.

But when you're dealing with chronic health issues, you can't do that. Oh, maybe you can for a short time - but it'll mean more time resting - i.e. even less time in the day for other stuff.

I know for myself, my minimum requirement is that 8 hours and that's IF it's good sleep.

I have chronic insomnia, so that good quality sleep is hard to come by. When everything comes together to make it happen, I can manage with 8. But 10 is better. When things are really rough, or I'm recovering from something, 12 can be the norm.

But let's go with 10.

In addition to more sleep, those of us with chronic illness often need more time to get up to functionality upon waking. It takes me about 2 hours after waking up to be able to do much of anything. That's 2 hours of just laying there after getting up and taking my meds.

And on the other end of things, I need to adhere to a fairly strict sleep regimen which takes about 2 hours. I take my meds, rest a bit on the sofa, do my bedtime bathroom stuff, rest a bit on the bed, etc.

So that's an extra 4 hours added to the whole sleep thing.

If we go with the average 10 hours of needed sleep, with 2 hours in each direction of wake up/get restful time - that's 14 hours out of the available 24 gone.

And this is all assuming things are going fairly well. Which is a big assumption, all things considered.

So okay that's 10 good waking hours each day, right? Wrong!

I need to rest a lot between each activity. And I mean each activity - whether it be physical like cleaning or stretching or mental like making phone calls or filling out forms.

How much time needed to rest varies each day, like everything else, but let's say it's an average of an hour between each activity. If I've got 10 hours - that should mean I can get 10 things done, right? Wrong!

Because what counts as an activity that I need to rest b4/after includes stuff like grooming (brushing teeth, washing hair), preparing and eating a meal, socializing with friends, even fun activities that take energy need rest breaks!

So, most of my days end up with about 5 things I can actually accomplish beyond like eating and basic self-care and cat care (feeding/playing with the cats counts as a thing too).

And I have to be really careful about how I schedule those things.

For instance, if I have an appointment that takes me out of my apartment - not only does that appointment itself take a lot out of me, but dressing and cleaning up to leave my apartment takes more energy than what I'd do if staying home, the trip there and back takes effort, etc.

So days I have to leave home - even for something small - that often ends up being the only thing I can do that day.

And even staying home means juggling what gets put on each day's list.

Planning to do more than one thing that takes a lot of physical effort - like cleaning - is a big no for me. I can choose to do a load of dishes OR scoop the litter boxes OR take a short walk OR take a shower, etc.

Many days? I can't do anything that physically taxing.

Which means having to take advantage of any day that I can, carefully managing which things take the most priority on days that I can, and letting a lot of shit that I'd like to do just go.

And the same goes for more mentally taxing items.

So it's a lot of very carefully balance and managed schedules. Anything out of the ordinary - whether it be planned like an appointment out of the apartment or surprise like the cats making a big mess that needs to be cleaned up ASAP can throw it all out of whack, too.

So when something like this sciatica that I've been dealing with pops up - that's both more time needed resting, more energy going towards just existing in pain, and more effort being put towards self-care with the extra stretches and PT and stuff - it takes over my whole life!

And when the physical therapist asks if I can increase by 10% or a doctor tells me I need to be walking more or someone casually tells me I need to get out more - it's so frustrating because no, I don't think I can increase by 10%.

What I'm already doing is so much more than usually do, which is already me pushing myself as hard as I can. And yes, for a short time, to make sure I get over this acute pain, I can push myself harder - but it means I'm letting more stuff get away from me.

More PT exercises means less energy to clean the apartment, trying to do more walking means having to expend more energy dressing/cleaning up in addition to the walking (because I do less of that if I'm staying in tbh), etc.

And I know the point is to gradually work up to stuff to add stamina and whatever but it just doesn't tend to work that way for me. I can push other stuff aside to do more stretches for awhile but trying to maintain that longterm ends up hurting me - not helping me.

But it's so hard to explain this to health care professionals without sounding like a malingerer or whatever. But I know myself and my body and my limitations and so yea, even when someone who is understanding and thoughtful asks if I can do more - I shut down. I do.

I'm already always doing as much as I possibly can. That's just who I am! If I could do more? I'd already be doing it!

I'm also a naturally positive and optimistic person, so if positive thinking could make the pain less? I'd already be experiencing that!

So how I explain all of that in the, like, 2-3 minutes they usually let you talk? How do I explain without breaking down in tears? How I let them know that I get how all of this works and I'm trying the best I can, so when you ask me to do more - I shut down.

I can't, really, because I'm already shutting down.

(anyway, this thread devolved a bit, but my point is that I don't have the same amount of available time as other folks do and every single thing I do takes more time than it otherwise would because resting has to take place and - yea)

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