dont give up hope
First of all, I am one of the lucky ones who has made a fairly quick recovery, so it is easy for me to say dont give up hope … but there were days when i did want to give up and if someone had given me the opportunity i have no doubt that during my lowest moments i would have taken it. But then i wouldnt be where I am today.
GBS is frustrating and one of the worst things is even if you accept you WILL get better, there is no knowing WHEN or how long that will take.
I agree that you need to focus on the little things … I can remember the first time i could lift my hand, i felt like i had moved mountains. they might seem like little things but when you have had no movement whatsoever they take on new significance.
You say you feel sad about yout dad maybe not being able to live the life he used to … I can honestly say after being in a coma, on life support and totally paralysed, I was so grateful to be alive. A lot of people have said they become a better person for the GBS experience … you learn to appreciate the little things and you truly understand what people with disabilities go through. I can rememebr the day i took my first steps witha full support walking frame. I was so proud of myself and all i kept thinking was if you had told me a few months earlier i would have to walk with a frame i would have been devastated, and here i was celebrating! To me that was reaching the point where if things didnt get any better, well i could live with that. easy to say now that i am living a normal life, but believe me your perception of things changes after GBS and you reasses your goals and priorities.
As for the confusion, that comes with the territory – the drugs, long term stay in ICU and also lack of movement (i couldnt turn my head or eyes so couldnt see what was around me so imagined my surroundings were totally different to what they were) I hated having anything on my hands or feet and had to have them uncovered at all times and i am normally the type whop likes to be completely covered in bed. Go figure!
Hang in there and we are all thinking of you