Thanks to having a few extra pain pills (and a long soak in FibroSoak www.MtShastaNaturals.com), I felt pretty good when I woke up today.
If I'd had to do this a few years ago, before I started getting appropriate medication, it would've knocked me out of commission for a week -- the 4.5 feet from the bed to the bathroom would've felt like climbing Mt. Everest. Today, I managed, in the same trip, to the back of the house to feed the cats and fetch my breakfast and to the front of the house for the newspaper (and yesterday's mail, which came in after I collapsed). Then had to lie down for a couple hours.
I'm not going to be able to do much today -- resting, napping, maybe some stitching -- but I will be able to prepare decent meals instead of pulling the emergency box of cereal bars out from under the bed. With luck I may be able to go out for lunch tomorrow.
Which is a far cry from the last time I lost a fridge (pre-CFS), where after loading up the new one I was able to go to work the rest of the day, attend an evening meeting, walk a couple miles home after that meeting, and got up the next morning to do it all again. There was no extra rest required because I'd done a little physical labor.
Unlike those who get CFS as children and don't know any other lifestyle except one punctuated with frequent rest periods, I am painfully aware of what I lost -- pre-CFS I often worked 18 hours a day, between my various jobs and business ventures; a few months later, I couldn't even manage 8 hours a day; at times, I spent 20 hours a day sleeping. Biking a mile caused a collapse (I used to bike 20 miles at a time), walking a few blocks caused a collapse (I used to think nothing of hiking 25 miles), my beloved dancing left me gasping for breath.
After I was finally forced to stop working, I suddenly realized how little I'd been enjoying life for the past 12 years, when every expenditure of energy had to be measured against the risk that I would not be able to make it through the workweek if I did something pleasurable. Without having to ration my energy so I could survive a week at work, I was actually able to do things on the spur of the moment, like go to a movie or shopping, instead of having to get rested up in advance in hopes that a trip to the store wouldn't cost me a day or two at work.
UPDATE:
I got up, did a little something, had to take an hour nap. Got up, spent a few minutes setting the kitchen to rights, had to take an hour nap.... That's the way it went all day, and it was a much better day than I anticipated.
For those who think the problem is that I'm just too lazy to do housework, NO. This is the real problem: I have to stop every few minutes and spend an hour or two resting, which means that there are not enough hours in a day to complete everything that needs to be done.
You prioritize what needs to be done. For me, Priority One, the thing that gets done even if I'm too sick to do anything else, is "feed the cats". Priority Two is feed myself. A lot of days over the past 7 years, I didn't even get to item 2 on the list, much less to such niceties as doing dishes/laundry, because just getting out of bed left me on the verge of passing out.
At one point when the virus was active and I had a 101 fever nonstop for six months, I went three months without buying groceries because I didn't get that far down the list before running out of energy. Fortunately, I had fully-stocked cupboards and freezer before then, and equally fortunately, I didn't have much of an appetite because of the fever, though by the end, I was putting together some interesting combinations of the few things I had left.
Thanks to finally getting the medications I asked for years earlier, a load of laundry no longer takes me a full week start-to-finish. I can now get it washed, dried, and out of the dryer in two days instead of seven. And I can finally load the dishwasher in one session, instead of it taking all day, between dizzy spells and naps.
Which still isn't as good as a healthy person, but at least I'm not falling behind as quickly as I had been when I could manage no more than 30 minutes per week in a house that takes at least 60 minutes a week to clean. Back then, my best efforts were only half as good as necessary, so every week, half of what should've been done fell by the wayside until it piled up to unmanageable levels.
2 comments:
Wow. You sound like you did much better than expected. That's great! If I understand correctly, the big difference is that you're finally on some sleep meds so that your sleep is deep & useful?
You understood correctly, Allura.
The specialist who diagnosed me in 1988 told me the key was to improve quality of sleep so the body could begin to heal itself, but when I asked for sleeping pills in 2000, they were refused. When I finally got to the outside specialist in 2004, he couldn't understand why they'd be refused; it wouldn't have hurt anything to try. So, when I deposed that doctor, I asked. His reasoning was that I was sleeping too many hours already and he didn't want to add to that. The concept that better QUALITY sleep would reduce the QUANTITY needed seemed to go over his head.
Same thing with the pain pills. The outside specialist could not for the life of him figure out why, with the levels of pain noted in the medical records, they kept refusing anything to treat the pain so I could sleep.
When I got the experimental sleeping pills (the ones that made me faint when I got off the horizontal), my immune system revved back up and beat back the virus. The months-long fever proved the doctors were wrong when they kept attributing the symptoms to depression and pooh-poohing my insistence that I had a virus.
End result: proof that if they'd given me what I asked for in 2000, I'd have been back to work in 2001, instead of having experts tell me I'll never work again.
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