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.
I 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.
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”
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 isnâ€™t necessarily the pain. Or the way it tends to disrupt intimate relationships, empty all financial reserves, and sabotage the best-laid career plans. Itâ€™s not even the endless barrage of (albeit well-meaning) suggestions for â€œcuresâ€ from everyone you meet, most of which youâ€™ve already tried anyway (except for the colon cleansing and the Jews for Jesus conversion).
No, itâ€™s the emotional suffering â€“ from all the guilt and the shame, of patients like me thinking itâ€™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.
Today’s post is at Fibrant Living. I want to talk about working with a chronic illness, or returning to work after you’ve developed one. Please comment there!