Friday, September 19, 2008


September is Chronic Pain Awareness Month, and for many CFS patients, it's more than words on an activism calendar.  After a few months with less pain due to the heat of summer, as the weather cools off, the chronic pain returns.

We're having an unseasonably cool September, already down to the sort of temperatures that we'd see in late November/early December, and with the sudden cool-down, I'm back to relying on heating pads, ThermaCare, pain pills, hot baths, etc., in hopes of getting comfortable enough to function.

There's been repeated research that chronic pain impairs memory function: it ties up so much of your brain's bandwidth that there's not enough left to form new memories.  In my case, it also impairs sleeping.  If I move a certain way, the pain jolts me awake, leaving me with a choice: do I take the sleeping pills that are strong enough to put me to sleep despite the pain, and then be too stoned to work the next day, or do I try to get by without the sleeping pills and try to do my work on 2-3 hours sleep?  I've finally reached a compromise where I take the sleeping pills on alternate days, and work on alternate days.  It's not ideal -- the doctors would like me to get 8 hours sleep EVERY night to achieve maximum healing, but then I couldn't work, couldn't run errands, couldn't do much of anything except lie in bed waiting for the effects to wear off.

This is a known problem with CFS ... it slows down your metabolism, which on the one hand causes you to gain weight, but on the other hand also affects how prescriptions are metabolized.  The first pill I was given to help me sleep, back in 1988, even one half of the smallest available pill knocked me out for 20 hours, and I was groggy the other 4.  We tried splitting it into ever-smaller fractions, but even the smallest piece we could cut still took 24 hours to metabolize out of my system completely; the joke was that perhaps the correct dosage was to just show me the pill bottle. 

The doctor recommended backing up the time I took the pill, well, there's a limit on how far you can do that -- if I took the pill as I left work at 5 PM, Vickey would have to make sure I got off the bus at the right stop and point me in the right direction for home, and I would just about make it in the front door before I fell asleep entirely.  If the bus had been late, Vickey would have had to drag me, fast asleep, the few feet to her apartment and call my husband to pick me up.

And the same thing applies with every sleeping pill that I've taken since then.  The ones that are strong enough to work are strong enough to prevent me from working, and there's a limit to how far I can back them up because then I fall asleep at inopportune times.  The ones I'm currently taking, I've found that 1/4 pill is not enough to put me to sleep.  A third works, but then I'm doped up for 18 hours.  Which means that if I wanted to take an office job requiring me to be functional at 9 AM, I would have to take the pill at 3 PM.  Which is fine, except that in a 9-5 job, you'll get fired for falling asleep at 3:15 PM.  But, if I take the pill at the time I used to get home from work when I worked downtown, I wouldn't be functional till noon, so I'd get fired for that, too.

The fact that I'm writing this at 3 AM my time (which will show up as 6 AM AOL's time when I post it) proves that it's not a figment of my imagination that I don't sleep.  One doctor condescendingly told me "sometimes we think we are awake when we are really asleep", but then refused to look at any of the evidence that proved I was actually reading books, knitting, writing e-mails, etc. at the times that I said I was awake.  I had tangible proof that I was awake till 5 or 6 AM every night for more than two years.

I've tried a completely dark, silent room (well, as dark and silent as you can get when you live in civilization with street lights, ambulances, freight trains, dogs next door, etc.), I've also tried a nightlight, and I've tried soft music, and I've tried the New Age CDs of ocean, babbling brook, waterfall, swamp frogs, gentle rain, you name it.  I've tried giving myself massages, I've tried the relaxation therapies where you relax your toes and then your feet and then your legs.  I've tried every non-prescription/herbal remedy, and none of them work for me.  In the last hour before going to bed tonight, I took a hot bath, had some warm milk, relaxed with a bit of stitching, and petted the cat, all of which are recommended to help you relax.  As soon as I laid down, the back spasms started, so I got up and put a ThermaCare wrap on trying to ease those.  And after an hour of tossing and turning, realized that I was getting frustrated -- I have important things to do tomorrow, which cannot be rescheduled, and therefore I can't sleep the day away -- and that frustration was not going to help me get to sleep, so I might as well get up and do something productive.

I don't need a special month to be aware of my chronic pain; I'm aware of it any time the temperature falls below 85.  If there's one reason I live where I do, it's because we spend a third of the year above 90 degrees, which minimizes the number of days I have to put up with the pain.

What I do need is a special month for OTHER people to be aware that CFS/fibro patients both suffer chronic pain, and that pain affects their lives in many ways.  Just because we have dragged ourselves out does not mean we are pain-free; when I run out of milk, I go to the store if there is any way at all possible for me to walk.  And just because we go to bed at a reasonable hour does not mean that we're sleeping -- in the last few weeks that I was working, I came home from work at 6 PM, immediately collapsed into bed or onto the couch (however far I had the energy to walk), but it was often 10-12 hours after I "went to bed" that I actually fell asleep; while I made the connection that I was not sleeping because I couldn't get comfortable due to pain, the doctors offered platitudes and simplistic suggestions (which I had long-since tried, because I know them all already), anything so that they wouldn't have to prescribe pain pills.  Since I had to get up an hour or two after I finally fell asleep in order to get to work on time, and couldn't nap at the office without getting in trouble, my "sleep hygiene" wasn't to blame: I wasn't sleeping in or taking naps, the problem was that going to bed at a reasonable hour and getting up at the same time every day is not enough when chronic pain is disrupting and preventing sleep.

The other night, I noted that I had spent 12 hours in bed, only 4 of it actually asleep, because it took till after dawn to become so exhausted that I fell asleep despite the pain that had kept me awake till then.  It didn't matter that I went to bed at a reasonable hour, not that night, not tonight, because chronic pain kept me awake despite my best efforts to fall asleep.

And that's something that everyone should be aware of.

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