I can relate to you fully. I've been off work for years now due to
mind-numbing fatigue. Couple that with developing sleep-apnea the last
couple of years and I'm a walking zombie alot of the time.
For me I had to get over the feelings of guilt. That being tired was
"my" fault somehow. I blame that on my English work ethic.
You can't fight fatigue. Go with the flow as we use to say in the
60's. I take as many naps throughout the day as I need now.
You're sick, its ok to do this. House work and whatever will wait.
Go for a walk every day in the fresh air, especially if its sunny
outside. I know thats hard in the Winter, I know I live in a snow belt
area of the Great Lakes.
Take vitamins, eat well, drink lots of water, meditate on the good
things in life.
Ive not tried it yet, but I think I will this Winter....I plan on
getting one of those lights that battle S.A.D. The blahs, and fatigue
brought on by lack of sunlight in the Winter months.
Remember fatigue isn't your fault. It's not a lacking in your
personality or motivation. It's a physical disability that should be
treated as such.
One of the worst things for fatigue is worry. Worry only causes harm.
It drains you of any remaining energy you might have.
Get a copy of the Serenity Prayer.
I feel for you......Its a very hard thing to work through.
May God bless you in your trials and sufferings.....may you learn tons
through it all.
PaulG.
> I'm not on treatment now- I had tried two years consecutively but had
> to stop because I developed aplastic anemia both times, even with
[quoted text clipped - 10 lines]
> emotional or physical?
> thanks to all, mercy
I don't normally have a fatigue problem but during tx I wished I'd bought a
one story home with no basement.
mercy - 30 Sep 2007 06:36 GMT
> I don't normally have a fatigue problem but during tx I wished I'd bought
> a
> one story home with no basement.
Yeah- those stairs are killers. During my last treatment, I had an
opportunity to hear Beethoven's 9th in concert. I could barely stand up- but
hearing the 9th live was on my to do list before i die. I thought all was
lost when they informed me there was no elevator to the balcony. It felt
like a nazi death march ;-) but I made it.
mercy
> I'm not on treatment now- I had tried two years consecutively but had to
> stop because I developed aplastic anemia both times, even with procrit-
[quoted text clipped - 9 lines]
> fatigue-mental, emotional or physical?
> thanks to all, mercy
Boy, can I ever relate to what you're saying! I sometimes feel like the
disease controls me. It decides what kind of day I'm going to have, or even
entire weeks and months. Now that I live completely alone, it's all too
easy to sit around here and have myself some rip-roarin' pity parties. I'm
really faithful about taking my Prozac because those pity parties come a lot
more often if I don't.
I wish I had some magic foo-foo dust for the fatigue. I don't. I still
work full-time, and I work very hard--not physically, but it's a tremendous
mental and emotional drain. However, the job(s) I do is/are very rewarding,
and as tired as I get, I think that's what keeps me going. I groan when the
alarm goes off at 5 a.m. and complain to myself all the way up the road, but
once I'm there, I'm ready. I drag my tail out the door and wonder if I can
make it all the way to the parking lot at 3:30, then get up the next morning
and do it all again. I know if I retired, I'd just give up completely on
everything. I really, really need that external stimulation and feedback.
EVERYBODY knows I have HCV. I decided a long time ago if I was gonna be
saddled with it, I'd use it to educate the folks around me (I even talk
about it to a class of inmates every week). For that reason, I can march
into my supervisor's office and say "This is too much for me to handle right
now. Can So-and-So take it off my back for a few weeks?" I never abuse it
and they never turn me down. They know they're going to get 100% from me
every day, but some days 100% of what I've got sure isn't much. I have also
drawn some strong lines with my family as to what I can and can't (or will
and won't) do. For instance, I have twin grandsons who are 3 1/2. I love
them to pieces but there is no way I'm able to watch those two for more than
a couple hours. When my daughter is home, the phone does NOT ring after 9
p.m. I go to bed early, and that's sacred. I pace myself, and that's
sacred too. When I hit my limits and say, "I can't," that's it. They know
better than to even think about pushing me. I've learned to say, "I need
for you to do this for me," which was very difficult because I'm too
independent for my own good, and it galls me to have to ask for help or
admit I can't do some things.
I think a big part of the battle is not letting the anger control me. Yeah,
I get plenty ticked off at the unfairness of it all. I get depressed. I
often wonder what it would be like to be healthy. But on the flip side, I
really do live a pretty full and interesting life within my limitations. I
have friends, family, a terrific job, a good support network. My BCLD
called today and told me that, at this point, I'm "stable" and his hope is
to get me through the next few years until those new drugs come out. He
thinks I'll get there, and I choose to believe I will too. Then I plan to
come back to ash-c and tell everybody how good it feels to be healthy. :-)
Sorry about the dissertation.... It helps to let it all out to a group of
folks who know what I'm trying to say.
Waterspider - 19 Sep 2007 02:57 GMT
>> I'm not on treatment now- I had tried two years consecutively but had to
>> stop because I developed aplastic anemia both times, even with procrit-
[quoted text clipped - 59 lines]
> Sorry about the dissertation.... It helps to let it all out to a group of
> folks who know what I'm trying to say.
Thanks for sharing, Thipper.
It's great news that you're in good enough shape to wait to see what the
future brings from medical science. Remember not so many years ago, when
most people had no clue what hcv was, or (worse!) thought it was a kind of
aids? Now though, the world is aware, and researchers are paying attention.
This is one good thing about so many people being infected... medical
science cannot ignore the problem.
Good for you, for not only admitting that you have hep c, but choosing to
educate others at any opportunity. Hopefully you inspire others here to do
the same.
mercy - 30 Sep 2007 06:15 GMT
> Boy, can I ever relate to what you're saying! I sometimes feel like the
> disease controls me. It decides what kind of day I'm going to have, or
[quoted text clipped - 45 lines]
> Sorry about the dissertation.... It helps to let it all out to a group of
> folks who know what I'm trying to say.
Hi Thip- sorry it took me so long to reply. It sounds like you have your
priorities down pat and plenty of coping strategies. And confidence in your
decisions. I need to learn not to feel guilty about not pulling my weight. I
had expected to be cured, healthy and working by now,but... I'll have to
wait for those new drugs with you. Thanks for sharing your story with me.
mercy>