Saturday, August 15, 2009

If you could change only one thing about YOUR fibromyalgia, What would it be and why?

Please participate in this questionnaire and invite others to do the same. I'm VERY interested with the answers we will receive.

"If you could change only one thing about YOUR fibromyalgia, What would it be and why?"

7 comments:

Teresa said...

For me it would have to be the level of activity I can do with family & friends. I get so tired of telling people I can't do things, or I'm just not up to doing things. I used to be very active with church, family, friends, etc... and now all of that has changed because of the pain, fatigue and fibro fog.

Trisha Pearson said...

Wow, that's a tough question. There are so many things about fibro that I'd like to change because it all sucks so much. But I guess I'd have to say I'd most want to change the fibrofog. As much as the pain and fatigue suck, if my mind were clear I could still do things. But the days when I have pain AND fog I really can't do anything and that really depresses me. It feels like such a waste.

marc said...

It's hard to say what I'd change I just know it's a REAL pain in many ways.
I think the way my body responds to weather changes but then there is the constant fibro fog.
I am a very stubborn woman and decided years ago not to let this take over my life. I do have days were rest is needed like the past three days. I try to shove the pain aside and keep on moving as I'm fearful if I stop it will be the end of me.

VycNyc said...

There are so many...as you already know! The overwhelming fatigue is always there and the pain is always there, but not as bad as a flare up! The mental fog is always there but not as bad as in a flare up!

I'm finding that when I wake up in the morning, I have to down at least three full glasses of water, otherwise I feel like I have a "brain hangover". My husband said I must be dehydrated having gone several hours without enough to drink. I always keep my morning meds and a glass of water or juice by my bed because the pain wakes me up between 4:30-6:00 am everyday!

So I figured it out what I want to change. I want to change being a "sick person". The other night, as every night, I was getting all my meds to put in the little glass dish by my bed to take even before I step foot out of bed in the morning. The pain wakes me up, although it's not always Fibro, it could be from my discs that have degenerated or from my neuropathy. So I realized, "my goodness, I am a sick person"....I was sad.

I'm sad for my husband, son and grandchildren. I am especially sad for my dad who feels he's responsible and being a parent, doesn't want to see his "child" (I'm now 53) sick.

This is long, and I am sorry.

My best to all who have some sort of chronic illness....
Vickie Rodriguez

Trisha Pearson said...

Marc - I think I feel the same way sometimes. I'm afraid to stop because I'm afraid I'll never get going again.

Vickie - I don't want to think of myself as a sick person either. Also, I always wake up super, super thirsty and feel dehydrated until I've drunk a bunch of water.

Does anyone else wake up feeling dehydrated? I'm really curious!

Teresa said...

I agree with all you girls. You all make good points.
Vickie, I guess I'm a sick person too. Sicker than a lot I know probably. My dad has RA and OA and has been on disability since I was born. I never imagined that I'd be just like him. I was always such a hard worker, and still am. It's just that now I work just to survive life, not to make money or "better myself". I'm just trying to live!
Marcie, I think I should be more like you. I think sometimes I've already stopped and once you do it's so hard just to get going again. I can't work and that depresses me so that sometimes I just feel like giving up. But thank GOD for a loving husband and little girl. They give me strength, and GOD Himself, to keep trying another day.

Teresa said...

Posted for Cyndi Pangle:
I would change my sensitivity to the cold.
Why? ~ It limits my activities. I will not go out in the cold for long periods...no ballgames, no trips up north for vacations.....etc.