Dearest Jackie:
Honey you are not alone, that is what you have to remember first and
foremost. Second of all, no one in their right minds would blame you for not
wanting to return to the hospital of horrors. I myself have just undergone
a similar but not quite so harmful experience and feel the exact same way.
As to getting out of bed and doing things, I have found that my body lets me
know when it's capable of handling more than being in bed (and it isn't
always often) and when I do, I tend to overdo which makes things worse.
If you have access within your reach by the bed to things like drinks,
crackers, tv, radio, lap top computer, whatever you enjoy then that makes the
day so much easier. If you are close to any friends in your area, encourage
them to come over and visit. Nothing cheers me up more than one of my
friends or even my sister or one of her kids comes to visit me.
I don't know if what I am saying is even helpful........but I know what it
feels like to want to sleep forever and it isn't a very nice feeling. It's
scary. But you have to convince your mind that you are in charge of your
body. Sounds harder than it really is. You just have to tell your body, ok,
I have to deal with this, this and that, and I can, but I will not tolerate
you doing this, this or that. You know what I mean? Don't let the ARD
control your life to the point where you feel you don't have a life. You
have a wonderful life worth living and wonderful friends and family who
probably just dont' know how to help you.
I have learned one thing in my life as first a cancer warrior and now an
adhesion warrior and that is you can't plan beyond today. You have to
concentrate on the here, the now. If you have to do it one hour at a time,
then do it one hour at a time; if you have to do it one minute, then do one
minute. But always always remember that you have many people here who love
you and care for you and will lift you up, bodily, spiritually, emotionally,
mentally, whatever. I've learned that in the short time I've been part of
the group.
If you want to talk to someone privately email me and we can exchange emails
back and forth and maybe atleast get you smiling for a bit.
Life is hard with ARD, it's harder with incompetent uncaring doctors and
hospitals, but as ARD warriors we will educate them and we will have won a
battle for those who follow in our wake, so hang in there my friend.
**HUGS*HUGS**HUGS**
Missy