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.

The Girl Is Better! And More Reading

That’s a relief. I was get­ting quite wor­ried. She spent most of the week­end sleep­ing or look­ing like a zom­bie, eat­ing only what Sam could coax into her, and using heat­ing pads. I’m start­ing to think that we should accept the offer to refer her to a pain man­age­ment doc­tor, if only to have some­thing she can take dur­ing a flare.

Blood NoirSo I read the lat­est Ani­ta Blake nov­el, Blood Noir. I’m not sure why I con­tin­ue to read these. Hon­est­ly, Hamil­ton is a decent writer. I enjoy her prose. She just needs to go back to plot school! Or maybe work with a co-writer who is strong on plot, but not rela­tion­ships or descrip­tions?

There was no plot at all for the first few hun­dred pages of the book. When some­thing involv­ing a pre­vi­ous “big bad” did hap­pen, it was noth­ing but an incon­ve­nience, and over with­in an hour of Ani­ta find­ing out about it. Whoopee. There was a cri­sis and dan­ger, of course, but I found them anti­cli­mac­tic after the vil­lains Ani­ta has van­quished in the past.

There was, of course, lots of sex. This one could have been called, “Ani­ta gets a fuck bud­dy.”

SunshineOh well. On to Sun­shine by Robin McKin­ley. Some­one rec­om­mend­ed it to me years ago, and I hap­pened to see McKin­ley’s name some­where and remem­bered it. I don’t think that I’ve read any of her nov­els before. Short sto­ries, maybe.

Abortion is NOT related to FMS!

I detest igno­rant big­ots. And I absolute­ly con­sid­er the fol­low­ing hate speech:

So like an HPV diag­no­sis in some­one would almost guar­an­tee that oth­ers would know the per­son­’s poten­tial morals or lack there of, and HIV almost always denotes a gay man, a diag­no­sis of fibromyal­gia could poten­tial­ly indi­cate a woman who has abort­ed a child. Just a thought.

Gosh — so all those males who have fibromyal­gia were actu­al­ly born as women, and had abor­tions before they had sex changes and devel­oped FMS? Every­body who is HIV+ because of blood trans­fu­sions or oth­er issues is a gay man?

I’ve nev­er even con­sid­ered hav­ing an abor­tion. My child cer­tain­ly has­n’t had one, and she devel­oped FMS when she was nine years old!

I did com­ment at the blog­ger’s site, giv­ing her infor­ma­tion on all the proof that FMS does exist and that our pain is real. I don’t believe she’ll ever approve the com­ment, because she does­n’t care about the truth–she just wants to spread her nasty pro­pa­gan­da.

Fibromyalgia or Depression?

There are many peo­ple, espe­cial­ly doc­tors, who claim that fibromyal­gia is just a symp­tom of depres­sion. I’ve had both, and I know the dif­fer­ence quite well. They are very, very dif­fer­ent.

Being in pain all the time can cer­tain­ly lead to depres­sion. That’s just log­i­cal. There are, how­ev­er, peo­ple who have fibromyal­gia who are not clin­i­cal­ly depressed. Depres­sion can also man­i­fest as phys­i­cal pain, but it is does not meet the cri­te­ria for fibromyal­gia.

I was treat­ed for depres­sion for years before I devel­oped FMS, though, and I tru­ly believe that if I’d got­ten prop­er treat­ment for men­tal health issues in my child­hood (post-trau­mat­ic stress dis­or­der and all the com­pli­ca­tions it brought, includ­ing major depres­sive dis­or­der) I prob­a­bly would­n’t have devel­oped FMS.

I nev­er have trou­ble dis­tin­guish­ing between the two, or between either of them and CFS/ME, which I also have. They’re all quite dif­fer­ent.

With FMS, the pain caus­es fatigue, and togeth­er they can (but don’t always) have an affect on your emo­tions. You may feel like doing some­thing, but your body absolute­ly will not coop­er­ate. There have been times when I’ve been feel­ing great, gone out to do some­thing I was SO look­ing for­ward to–and near­ly col­lapsed in the mid­dle of every­thing when my body said, “All right, that’s it, no more. Done. Where’s the bed?” (We’ve joked that if I ever man­age to get a scoot­er or elec­tric wheel­chair, it will have to have a remote con­trol fea­ture so that Sam can steer me on home when I’ve passed out.)

But seri­ous clin­i­cal depression…it does­n’t mat­ter whether you’ve got the phys­i­cal ener­gy or not. Log­ic does­n’t mat­ter. Know­ing that you’d feel bet­ter for hav­ing a nice, hot show­er is utter­ly irrel­e­vant. The fact that the tele­phone ring­ing is con­tribut­ing to your headache, and you could make it stop by mere­ly lift­ing up your arm up push­ing a but­ton, is irrel­e­vant, because lift­ing your arm would take too much damned effort. Yes, some­where, on some lev­el, you may know that you’ll lose yet more func­tion for not get­ting up and doing your exer­cis­es, but it’s less impor­tant than star­ing at the ceil­ing, or the pil­low, or what­ev­er is in front of your face right now. Not that you real­ly make any kind of con­scious val­ue judg­ment or any­thing, but the star­ing has iner­tia going for it. Even if noth­ing IS hurt­ing, even if you have all the ener­gy in the world and you could do any­thing you just don’t care.

Remem­ber that, the next time you hear some­one claim­ing that FMS and depres­sion are the same.

Whoops! Yesterday was FMS/CFW Awareness Day!

I intend­ed to post and maybe even try to get a pod­cast out, but end­ed up using my ener­gy to do an inter­view with a reporter. I don’t know when the piece will come out (it was­n’t for aware­ness day–that was just an amus­ing coin­ci­dence), but I’ll let you know when/if I hear any­thing.

She also inter­viewed Sam, since the top­ic was “fibromyal­gia and inti­ma­cy.” He’s so won­der­ful!

Cortisol and FMS and CFS/ME?

There’s been a lot of buzz over the past week about a study pub­lished in the Jour­nal of Chron­ic Fatigue Syn­drome that sug­gests treat­ing fibromyal­gia and ME/CFS with cor­ti­sol (a steroid), based on the fact that most patients have low cor­ti­sol lev­els. I do not have access to that pub­li­ca­tion, but would like to point out some con­cerns.

First, most of the reports are not clear about the fact that this was a lit­er­a­ture study, rather than a con­trolled clin­i­cal study.

Sec­ond, while at least one sto­ry did claim that the lit­er­a­ture study was fol­lowed up with an “obser­va­tion­al study” in which all of the FMS/CFS/ME patients in a par­tic­u­lar clin­ic were giv­en cor­ti­sol. That does not meet the stan­dards of a con­trolled, clin­i­cal study, which would require an untreat­ed con­trol group and a group receiv­ing place­bos instead of cor­ti­sol.

There have been mul­ti­ple clin­i­cal stud­ies of the effects of steroids on FMS/CFS/ME. I found records of stud­ies of pred­nisone and hydro­cor­ti­sone, in par­tic­u­lar. Those stud­ies did not find any pos­i­tive effects from treat­ment com­pared to place­bos, and in some cas­es there were sig­nif­i­cant prob­lems result­ing from the treat­ments. I did not find a study specif­i­cal­ly involv­ing cor­ti­sol, but I don’t know if that’s because there has­n’t been one or because I don’t have access to the appro­pri­ate data­bas­es. (I’m sure there are more stud­ies out there, but I don’t have access to Med­line.)

I’d strong­ly sug­gest wait­ing for the results of repeat­able, con­trolled clin­i­cal tests of cor­ti­sol before try­ing steroid treat­ment. Steroids have seri­ous side effects, and should not be tak­en light­ly.