Diane’s Sister

My 2 cents here:
As far as the blanket… I would of screamed if I could of spoke at the time “NO” blanket, in fact I requested a indirect fan (Via using a alphabet board) over my gown covered body which I was very cold but it seemed better than any warmth. Warmth made the pain worse for me causing what I call “fantom leg” which as I laid there unable to move any part of my body, my legs would feel as if there was frozen metal rods wrapping around my paralyzed legs.
In my mind I thought I could move my legs from that pain and in my mind my legs moved with much pain through the metal and out giving relief for a few moments before the metal rods seemed to find it’s victim and as punishment for moving the rod would send in ice picks to plunge deeper in my legs. I learned not to stay very long “out” and would endure the pain going back thus avoiding the ice picks punishment which gave seconds of relief.

My thoughts while laying paralyzed varied from funny dreams of peoples faces with turned up noses that looked like trees to scary thoughts of being kidnapped and nurses trying to poison me. Later I was told it probably was from the morphine I had been given for pain. It was a trip and it left me wondering what was real and what wasn’t. Took me awhile to deal with the reality of it because it seemed very real.

As far as rehab, movement of body is important but the body is very sensitive to touch. Esp. the touch by others as in my rehab when they came in to exercise my legs..they grabbed my toes to lift my foot so they could hold under my ankle to begin bending my leg. I would be yelling NO inside and not able to say anything verbally I would have to endue the pain. Only when it was noticed of the bruising on my foot did they question if it might be causing pain. Through the alphabet board I later was able to explain how much pain it was to have them touch me let alone try moving my body parts.

Patience IS one of the hardest things to learn for those who suffer from GBS and also for our caregivers and family.

Acceptance of the body and life we have now is the second hardest.

Third is wanting to have more ability to understand all the many things going on within your body.

This forum has greatly helped me cope with GBS and its residuals.
No two people go through this the same way. Take different parts from each hopefully to answer your many questions.

I was diagnosed with GBS on 26 September 2006. Had 2 rounds of IVIG. I was in the ICU for about 8 weeks then in hospital room for about one week or two then to two nursing homes each for about six months before requesting to go home on 19 December 2007. It is now 5 July 2010, I am still using a wheelchair and walker, my hands and feet still numb. I am now 60 yrs old and want for the use of my hands to come back so I can paint again. Trying to accept as it is but understand mending takes time. I am learning adapting by using digital art painting though ambient design online. Each day I look for but not expecting a small new area to of healed. One day about two weeks ago the top of one foot itched terribly and I rubbed it a lot which up til then I couldn’t stand it being touched as much. Then other day while listening to some music I felt my foot move, I looked and one more time it moved just ever so little, but it moved then stopped and has not moved since but it DID move. It WILL again. 🙂

If I was to say what I would of asked for if I could of then was:

A fan indirectly blowing because direct was even too much “touch” for me.
A alphabet board and someone that knew what it was for and how to use it.
Nurses NOT to wear so much perfume.
No blanket as explained above.
Doctors to talk to “me” even if they don’t think I can hear or see them.
Find some way to communicate with me and me to them.
A soft Call button VERY important when all you can do is turn your head.
and last, better flavored ice pops, crushed, LOL

Thanks for being there for your sister. I know it will and is meaning a lot to her. What she doesn’t need is hearing how bad you feel about not being there as often. We learn to adapt and accept through time.
Your a wonderful sister to be so lovingly concerned.
Prayers to her quick recovery.

CKLee