Venting (Bad Morning)

[Guest guest]

Hi Group,

I rarely post but visit here every day. I feel so bad for everyone

who is having pain. I am one of the lucky ones (pain only

occasionally). I am 17 mos post-op. Everyone tells me I look

wonderful but I seem to have taurettes (excuse spelling)of the body.

I am very hyper sensitive (ataxic). I went to a wedding with a

picnic reception yesterday. I got so embarrased. With all the

activity, noise, and trying to carry a conversation, my body jerks.

If someone gets close to me my legs jerk and my arms fly out. I also

utter a startled sound. They apoligize for scaring me. I really

don't know what to say. Heaven forbid if they try to give me a hug.

I cannot hold my body still. I then become so unsure of myself that

my legs become very weak and I can hardly walk. My knees will jerk

out then back making me walk like I am drunk. My head feels confused

and I find it hard to keep uup with what is going on around me.

I haven't read where anyone else has these symptoms. Am I crazy? The

balance problem was there before surgery but the jerking and walking

problem started about 3 mos post-op. By Dec 2000 I was ready for a

wheelchair. They did a spinal drain over a 4 day period and I could

walk toe to toe. Now it seems like I need a spinal tap approximately

every 3 mos. I go to my dr Sept 28th.

Does anyone else deal with this? I find that I still connot accept

what I have become. I am so different from the person I used to be.

Sometimes I think it is all in my mind and if I ignore it it will go

away.

Sorry this is so long but I am feeling very sorry for myself this

morning. My family and I laugh most of the time about my reactions

but it is hard when I go out and yesterday was very difficult. I

know my friends pity me and feel so bad that this has happened to me.

They don't know what to say and neither do I. Help!

God Bless. Peggy