Re: Was (sleep )How does everyone feel NOW: What do you wish you had done in the beginning?

[Guest guest]

Hmm. Interesting question, what would I have done to stop CFS in its tracks -

Well, I couldn't stop its gradual, debilitating increase in symptoms.

For one thing I wasn't diagnosed until I was taking so much leave, my job was in

jeopardy.

And I had money problems and couldn't stop spending (due cog-fog, thinking/

reasoning/ decision problems as I later discovered).

And I had no idea how many symptoms I'd suffered my whole life which were

related to " CFS. " I found out all those symptoms were due to Orthostatic

Intolerance of which I had suffered my entire life. Vague, unidentified OI

symptoms led to being unable to function at all unless I was willing to

(unknowingly) use adrenaline to get things done.

I found a tiny diary from years before retiring on disability where it had been

advised I write how I felt at bedtime which was really really tired every single

night.

One can go a long time while really really tired and while suffering awful

symptoms if symptoms do not get in the way of one getting to work. By the time I

retired, I got maybe 2-3 showers a week, wore dirty clothes to work because I

couldn't get around to doing laundry. My life was falling apart while I got

sicker, becoming even more exhausted.

For instance I suffered awful abdominal pain every single day of my life until

eliminating milk protein in '91, then wheat/gluten in '97. Wheat/gluten, milk

protein and other food sensitivities are common in CFS/OI patients which I

learned after joining Northern Virginia CFS support group, from reading a

handout offered at meetings.

Since disability retirement, I have learned to lay low, get feet up and head

back whenever I can (a tripod legged, cane handled sportseat helps), lots of

water throughout the day, electrolytes in very small doses many times through

the day, distracting myself from the messiness of my house all help me avoid CFS

and OI symptoms.

Healing is possible. Writing gratitudes, most every day, thinking in more

gratitudinous ways through practicing gratitude is healing.

toni

from iPad

cf-alliance.tripod.com/

> What do you wish you had done in the beginning?

>

> How do I stop fibro (and cfs) in its tracks?

>

> Thank you

>

> --Olnisa

[Guest guest]

For me, I wish that I would have listed to my body more - rested more, done

light exercise, taken supplements, eaten healthy, and minimized stress as much

as possible. I was told for many years, it's all in your head - you just need

to get out there and work through it. I did way too much and I think made

myself worse in the long run.

For now, what works for me is managing symptoms as they come up, pacing myself

and above all minizing stress as much as possible.

Good luck.

Anne

>

> > But it's my understanding as told to me by one of the top specialists in the

field, that once

> > we have it, especially if it's been a while, we're not going to get rid of

it.

> > For instance by the time I was diagnosed, I'd had it a few years, and it

just got worse.

>