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.

Review: Women, Work and Autoimmune Disease

Women, Work, and Autoimmune DiseaseI read Women, Work and Autoim­mune Dis­ease by Ros­alind Joffe and Joan Fried­lan­der a few months back, but for some rea­son my review on Ama­zon nev­er showed up, and I did­n’t think to keep a copy for myself. It seems to final­ly be there now, so I’ll put it here, too (slight­ly expand­ed).

This book is one the best I’ve ever found for those of us who have chron­ic ill­ness­es, but want to con­tin­ue work­ing. It goes beyond the stan­dard “cop­ing tips” to talk blunt­ly about pac­ing your­self, search­ing for a job, keep­ing a job, nego­ti­at­ing with your employ­er for accom­mo­da­tions, and being self-employed. Top­ics like “when do I dis­close a disability/illness?” are cov­ered by authors who have exten­sive per­son­al expe­ri­ence build­ing their careers despite chron­ic ill­ness­es.

The title does refer specif­i­cal­ly to women, but I think the book can also be very use­ful for men. Like­wise, there’s no rea­son to lim­it read­er­ship to peo­ple with autoim­mune dis­eases.

I’ll be buy­ing copies to send to some of my friends. I don’t plan to let mine out of my sight! I hope to get a copy of the accom­pa­ny­ing work­book soon, as well.

Jof­fe’s blog, Work­ing With Chron­ic Ill­ness, is also good read­ing.

And That’s the Week

I con­sid­er Sun­day the first day of the week, rather than the last.

It was a week full of appoint­ments for the girl, and get­ting paper­work shuf­fled to var­i­ous bureau­cra­cies. Sam and I had love­ly dates Wednes­day and tonight, although both of us were so exhaust­ed Wednes­day that we turned in much ear­li­er than usu­al.

Con­tin­ue read­ing “And That’s the Week”

The Value of Education for Chronic Illness Patients

Paula Kamen, author of All In My Head, talks about the val­ue of edu­ca­tion in cop­ing with chron­ic ill­ness in an excel­lent edi­to­r­i­al in the New York Times.
Leav­ing the Rab­bit Hole. This pas­sage, in par­tic­u­lar, spoke to me:

The worst thing, to me, about hav­ing a non-stop mul­ti-year headache isn’t nec­es­sar­i­ly the pain. Or the way it tends to dis­rupt inti­mate rela­tion­ships, emp­ty all finan­cial reserves, and sab­o­tage the best-laid career plans. It’s not even the end­less bar­rage of (albeit well-mean­ing) sug­ges­tions for “cures” from every­one you meet, most of which you’ve already tried any­way (except for the colon cleans­ing and the Jews for Jesus con­ver­sion).

No, it’s the emo­tion­al suf­fer­ing – from all the guilt and the shame, of patients like me think­ing it’s our entire fault, and maybe all in our heads.

She also men­tions a good site for any­one who has prob­lems with migraines, Rob­bins Headache Clin­ic.