How do you feel when you return home at the end of the day?

fractured reality/grace under pain

The NaBloPo­Mo prompt for today:
How do you feel when you return home at the end of the day?

I’m not sure I should have answered this one, as I doubt that my answer will be in sync with the intent of the ques­tion. I don’t leave home every day to go to work, or leave home every day, peri­od.

How­ev­er, when I do leave home, how I feel when I return depends on many fac­tors. How did I feel before leav­ing? How long was I gone, and how much phys­i­cal, intel­lec­tu­al, and emo­tion­al ener­gy did I have to expend while I was out? Did I have to deal with any­thing unex­pect­ed, good or bad? How many peo­ple was I around? Were they strangers or peo­ple known to me? Did I encounter them all at once, or in small groups of one or two at a time? Was Sam with me as a buffer? fHow’s my blood sug­ar? Am I well hydrat­ed? What was the weath­er like? Did I remem­ber to take my reg­u­lar med­ica­tions? What about tak­ing break­through pain med­ica­tion, anx­i­ety med­ica­tion, or a mus­cle relax­ant before I found myself in a state where they would­n’t work very well? Did I use my scoot­er if there was much walk­ing? How noisy was the envi­ron­ment? Was it drafty, or over­ly hot or cold? Did I have to dri­ve? Was I out to do some­thing I want­ed to do, or was I doing some­thing I had to do?

Fre­quent­ly, I’m so dog-tired that I can bare­ly drag myself in the door. I have actu­al­ly fall­en asleep sit­ting in the car, in the dri­ver’s seat, more than once. (There are plen­ty of rea­sons that I do not dri­ve much any more.) Deal­ing with the secu­ri­ty sys­tem seems an intel­lec­tu­al chal­lenge designed for Ein­stein. I’m eas­i­ly con­fused and my mem­o­ry is beyond poor. Even if I am dehy­drat­ed or I need to eat, I’m too tired to be inter­est­ed in food or even water. If I was out for too long, or if it was a par­tic­u­lar­ly stress­ful peri­od, I get a fever and my body reacts as if I’m in shock. I feel like I’m freez­ing, no mat­ter what the actu­al tem­per­a­ture around me is, and I start shak­ing bad­ly.

So that’s how I feel most days when I return home at the end of the day, if I’ve had to leave home. I think that should go a long way towards explain­ing why I’m such a home­body these days! I am for­tu­nate in that I have Sam, Katie, and oth­ers in my life, so I am able to have a ful­fill­ing life with­out being very adven­tur­ous.

Responses to various comments about ME and FMS

Some of the com­ments are pret­ty old by now, but there are cer­tain themes that come back, over and over again. I’ve decid­ed to answer them once, and that’s it.

ME and FMS are not “lifestyle” dis­eases. Researchers have found genet­ic, neu­ro­log­i­cal and car­di­o­log­i­cal anom­alies, so get off that blame-the-vic­tim bull­shit. We know bet­ter. We’ve done the diet and exer­cise dance. We’ve tried air-clean­ers and remov­ing tox­ins and nat­ur­al cleansers and vit­a­mins and health foods, and while some of them are nicer than the alter­na­tives, they can­not cure chron­ic fatigue syn­drome or fibromyal­gia because they are not part of the cause.

While we’re at it, no, alien abduc­tions don’t cause FMS, either. I know you’re laugh­ing, but there real­ly is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chron­ic Fatigue Syn­drome” is a total­ly inad­e­quate name for a dis­or­der whose suf­fer­ers expe­ri­ence far, far, more than a lit­tle tired­ness. That’s why we have a new and bet­ter name for CFS, as of Jan­u­ary 2007: ME/CFS, or myal­gic encephalopathy/chronic fatigue syn­drome. The dis­ease has been known as ME all along in the rest of the world, although some­times the acronym was used for myal­gic encephalomyelitis. Per­son­al­ly, I pre­ferred one of the oth­er sug­ges­tions, chron­ic neu­roen­docrineim­mune dys­func­tion syn­drome (CNDS), but I was­n’t on the com­mit­tee.

I would hap­pi­ly rename fibromyal­gia “you don’t want to be me” or “betray­al by entire body, tak­ing your mind with it,” but I don’t think any­body is sug­gest­ing that it be renamed. The name just does­n’t seem ade­quate to its impact, though it’s a lit­tle bet­ter than some of the old­er names, like “rheuma­tism.”

To oth­ers who have said “pre­ven­tion is bet­ter than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plen­ty of apho­risms, too. Tell me, pray, how one “pre­vents” dis­or­ders whose ori­gin is unclear? As I said above, researchers have iden­ti­fied genet­ic anom­alies. We have fair­ly good evi­dence that fibromyal­gia, at least, has a genet­ic com­po­nent. We’ve got brain scans show­ing that fibromites’ brains react dif­fer­ent­ly to painful stim­uli, and oth­er tests show­ing that our spinal flu­id has much high­er lev­els of a neu­ropep­tide involved in trans­mit­ting pain impuls­es than non-fibromites.

With that in mind, how would you go about “pre­vent­ing” fibromyal­gia? Advis­ing us not to breed? Many of us have already done so by the time we’re diagnosed—and, of course, that can’t help us when we’ve already got the dis­ease. We can use our own diag­noses as warn­ings that our own chil­dren may have a sus­cep­ti­bil­i­ty to fibromyal­gia, but what then? Smoth­er them in cot­ton bat­ting, to keep them from expe­ri­ence any stres­sors in life that might set off the FMS bomb in their genes?

Being fat does­n’t cause ME or FMS, either, although it’s com­mon to gain weight after devel­op­ing either dis­or­der. I don’t know any­one who is able to main­tain the lev­el of activ­i­ty he or she did before falling ill, and many of the drugs used to treat the symp­toms of these dis­or­ders cause weight gain. Los­ing weight is even more dif­fi­cult for us than for oth­er peo­ple. Telling us that we’d feel bet­ter if we lost weight is not help­ful in the least. I’ve nev­er once heard of any­one who was “cured” of FMS or ME because he or she lost weight—and if it were hap­pen­ing, I would know it, because I pay a lot of atten­tion to these things.

Even if I thought weight loss offered a “cure,” or even ame­lio­ra­tion of symp­toms, I see no rea­son to dis­cuss drugs like Xeni­cal at any length. Any drug or pro­ce­dure promis­ing weight loss will has an easy time get­ting approved because of our soci­ety’s hatred of fat peo­ple. Fen-phen, any­one? “Oh, the drug will kill some patients, or leave them with per­ma­nent heart dam­age? Hell, it’s worth it if there’s a chance of los­ing weight!” The weight-lossself-hatred indus­try has more than enough mon­ey and pow­er to lube their way past any flim­sy lit­tle reg­u­la­tions stand­ing in their way.

Diet and sports and their rela­tion to weight are anoth­er thing all togeth­er, and beyond the scope of this blog. I rec­om­mend you to peruse the worlds of the delight­ful Sandy Szwarc over at Junk­food Sci­ence, who does cov­er that top­ic, fre­quent­ly, thor­ough­ly, and well.