Thursday, December 2, 2010

Update on My Health

In response to a comment asking for an update on how I'm doing ... better than 10 years ago in some ways, worse in others.
I now have a doctor who takes me seriously, believes that it's a physical illness, and is not trying to fob me off with anti-depressants and pep talks.  This one understands that when I say "I can't" it means that I physically can't, not that I'm afraid to try.  Just having a doctor who believes you is a huuuuge help.
The good days aren't as good as they were, but the bad days aren't as bad, either.  I now exist mostly in "happy medium" land, with few days differentiable as "good" or "bad".  If I were permanently stuck where I was then, I wouldn't be able to stand it, and would be one of those CFS patients contemplating suicide – that wasn't living, it was merely existing. 
Dr. Murphree ( had told me you need at least one year of good sleep to make up for each year of bad sleep, therefore, 2010 was the earliest I could expect to reach maximum recovery; if this is as good as it gets for the rest of my life, it's tolerable.  I can follow the plot of a TV show I haven't seen 1000 times before.  I can sit up for a few hours without passing out.  Traveling to visit my parents isn't a piece of cake, but it's no longer impossible; the trip may drain me but it won't kill me.
Since the pain is now being addressed, I'm sleeping more than 2 hours a night, and while 5 hours a night is far from ideal, it is enough to be more functional.  10 years ago, I'd wake up, read the newspaper, and already be mentally and physically exhausted.  I spent 23½ hours a day horizontal to avoid passing out.  A half-hour trip to the doctor would land me in bed for several days.  I had no immune system left. Every physical resource had been completely exhausted, and I wasn't sleeping enough to replenish myself.
Now, I can read the newspaper and still have enough brainpower left to read something else; I often need a nap to get through the day, which makes it impossible for me to return to an office job, but I'm able to do some work at home and return the work in a reasonable time frame – days, not weeks.   10 years ago this week, I accepted a 40-hour research/writing job, and even with subcontracting some of the online research work to a friend, it took over two months to complete because I had to spend so much time lying down in a dark room, working less than 5 minutes per hour.  I still can't do 40 hours of work in one week, but I could realistically do it in one month instead of 2½.
I still get lightheaded and need to lie down, but it's not constant.  I went to the doctor last week and although I had to lie down immediately on returning home, the trip didn't cost me an entire week of resting up for and resting up from.  The digestive problems aren't gone but they're no longer a daily issue; my first waking thought is no longer "I'm going to throw up."
Knock wood, last winter I only lost a few days to sinus problems, as opposed to the winter of 2000-2001 where I had one severe sinus headache nonstop for months on end and couldn't get off the horizontal for months as a result.  A combination of improved sleep and Dr. Murphree's CFS/Fibro Formula seems to have done the trick of getting my sinuses back under control.  – mark your calendar, because you get a discount on Tuesdays!  (To order, use PIN #RMURPH)
As a friend recently mused, at this age, we're never sure how much of what we're feeling is the CFS and how much is typical for our age.  I can't do as much on my good days as I used to.  Is that because I've been mostly sedentary since 2000, or is it a sign that Cheney's cardiac insufficiency is starting to catch up to me?  I can't afford the couple thousand dollars for another cardiac test to find out.
My first specialist in 1988 had the theory that if you fix the sleep disturbance, a lot of the rest will fix itself.  Dr. Murphree agrees.  Whether it's sleeping pills or pain pills, somehow improve the quality/quantity of sleep, and then you'll see what remains to be addressed pharmacologically. 
Fortunately, I came across the clinical trial for the experimental sleeping pills and enrolled myself over the objections of the doctors who were choosing to believe that hours in bed equates to hours asleep, therefore, in their opinion, I didn't need sleeping pills because "you were sleeping too much already".  That year of good sleep revitalized my immune system so it could begin to control the virus again; that, alone, probably saved my life.
Now I look forward to the day they're doing clinical trials at WPI so I can get more magic pills (some sort of anti-viral) that may help me get back on my feet. 
Because I've been doing yoga and resistance exercises all along, I have not lost muscle tone (just stamina), so I'm a step ahead if the opportunity presents itself to go back to work.  Right now, still not possible, but looking a lot more like reality than it did 10 years ago when I was basically just waiting to die.



Georgina at Doggeanie said...

Thank you for that,I'm so glad that you are feeling better. I was interested because I'm over 5 years into cfs/m.e. I'm a lot better too and like you, if I'd have stayed the same as I was in the first two years,.... what initially got me better was shiatsu. That and not having any caffeine helped.
thankfully things are much as you are finding them too. I haven't had a big relapse (touch wood) and think it is because I "manage" it better, I listen up more and take longer rests if I need to when I need to. Thanks so much for writing,

CFS Facts said...

I still consider this "relapse" since I'm not well enough to do a lot of things. It'll be "remission" when I can work consistently, at least 20 hours a week (which is what VocRehab requires before they'll assist you with placement).

As I said, this is at least tolerable. I can do more than lie in bed in pain.