As has been discussed in an online CFS support group recently, the key to living successfully with CFS is pacing.
After almost a year of taking pain pills to help me sleep, I am up to having about 180 good minutes per day (a vast improvement over when I had 5-10 minutes a day). If I go over that, I know I'm going to feel terrible.
The problem is, it's not 180 consecutive minutes; it has to be interspersed with rest periods. Ideally, I'd do something 5-10 minutes and rest the remainder of the hour. Good in theory, impossible in practice. You cannot get to the grocery, through the grocery, home from the grocery, and the cold stuff in the fridge in 10 minutes. Not even if you live right next door to the grocery, which I don't. A standard weekly grocery run takes about an hour start-to-finish, and because I'm not able to do it 10 minutes at a time (Safeway takes a dim view of people napping on their floor), I know that I'm going to feel like hell the rest of the day, until I've rested enough to "refill the account" after the huge withdrawal I just made.
As we speak, I hear the cat knocking something down in the other room. I've already done my 5 minutes of physical activity for this hour, and my 5 minutes for the next hour is slated for food preparation. Depending what and how much she just knocked down, it might take me the rest of the day to get it all picked up. But even if it's just a simple matter of picking up a few items and putting them back on the shelf that Her Majesty wanted to sit on, it still means that what I had planned to do 2 hours from now has to be rescheduled, which puts me behind schedule. If she's made a bigger mess, then I wind up a full day behind schedule on my physical-activity tasks (which cannot take up the full 180 minutes,unless I want to spend the next couple days in bed with a pacing limit of about 10 minutes a day, barely enough to nuke canned soup and walk to the bathroom).
But I've gotten behind on my paid work due to an unscheduled crisis earlier this week, so tomorrow's entire 180 minutes should be devoted to catching up that, not whatever chores need to be rescheduled from today.
For more on pacing, read the writings of Ellen Goudsmit on Co-Cure, or easily googled.
But for me, it's time to lie down for my regularly-scheduled rest period so that I'll feel well enough to go fix my next meal. That's the reality of CFS. Not the myth that we "can do anything we want, except work because you don't want to do that".
(For the record, most of my blog posts are written off-line, a few minutes at a time over the course of hours/days/weeks. Writing them in one sitting would be too much not only for my CFS but also would cause intense wrist pain from a doctor-documented non-CFS problem, which would be disabling in its own right if the judge could see past the CFS diagnosis to look at the actual medical restrictions the doctors have issued which VocRehab says precludes doing ANY job.)
2 comments:
I was actually wondering how you handled your blog posts.
For groceries, do any stores by you offer online shopping? The Shoprite near me charges $10 per order for them to do all the shopping. The ladies who do it are nice, actually look at the produce when they pick it out, mostly read the notes I leave, will call when stuff is out of stock/different, and, most importantly, they'll help load your car. It's completely worth it. I can add stuff to the list all week as I think about it, and it's there when I'm ready to place the order, or I can just do the list in bits as I have time/energy. For $15-$20 they'll deliver it to you. I think I'd keep using the service even if I could do the shopping myself because it's just that much easier. Plus, I think I do better on prices because I can sort based on unit price. And yes, you can give them your coupons when you check out.
There's a second chain in our area that offers delivery as well, so I don't know what you'll find by you. I was surprised it was so inexpensive, actually.
Safeway.com has online shopping, but it's not ideal. They won't take your coupons, and there are some things (like deli counter and flower bouquets) that they won't do. The fresh bakery items and fresh produce aren't all listed on the website, either.
Unfortunately, the people who pull the items aren't always precise. More than once, I've ordered regular and got extra-spicy (just what my IBS doesn't need!), or ordered regular and got sugar-free (aspartame affects me) because the shopper just grabbed. Which means then I have to make a trip to the store anyway to return it and get the right thing. And since I prefer the deli counter roast beef and cole slaw to the pre-packaged stuff, I may as well just go myself, even knowing it'll cost me the rest of the day.
When I was at my very worst, even the online shopping exhausted me. I had to force myself to concentrate too long; at that point, if you left something off your order, you had to start a new one, so if I couldn't finish shopping in one sitting, I had to either cancel the whole order (and start fresh the next day) or pay an extra $10 for a second order. At least now you can edit up until the morning of delivery.
Post a Comment