I am very worried about a few things:

1) I will never be able to get a dx that fits my ailments (I think the ones I have are just because they can't figure out what is really wrong).

2) That I will not be able to do the many things that my husband and I planned to due as soon as my son is on his own (or at least graduated high school).

3) Today I was supposed to be at a Special Day Religious Assembly but could not make it because I over worked myself yesterday getting ready for it. This one really makes me sad. I have missed a lot of congregation meetings (except for the fact that they do have a conference line that I always call in on when I can't physically make it). But I still wonder if I am doing enough.

4) That I won't be able to travel home (to WV) to see all my family, because it is a seven hour drive and it hurts to much to sit that long. Even with three breaks it is difficult. I really miss my sisters and brother and mom and dad, as well as many cousins and aunts and uncles. I have one cousin who lives near me, but I had never met her until 2004. She is much older than me and has always lived in California. True we talk, but I am so much closer to those at home (WV).

5) That I will become so much more depressed (if that is possible) because I feel like I am getting no where in life. HOME, HOME, HOME...it gets old after awhile. I can't drive until I am seizure free for 6 months which won't be until mid-December (and then I still worry about the what if's while I am on the road). Everyone that I know works, so I really can't call on anyone to eat lunch or just go out for an hour or so. (If it was more than that I would be exhausted as I am today, not to speak of the pain).

Thanks for letting me get that out. I needed to since my husband and son are both at the Special Day Assembly (we're Jehovah's Witnesses, that is why I don't refer it to a retreat or church).

Best wishes to all, especially those who are finding it difficult right now.

Missy

Missy, I am living proof that when you really want to do something, you'll find a way. I can walk about fifteen steps now with an AFO, the right shoes, and a rollator. I do it anyway.

When I'm not up to a long drive, I do it in shorter spurts and allow myself the time.

I am in a race against a disease to do almost everything I've ever dreamed or wanted ("almost" because skiing the Alps like this has lost its luster to me).

I'm worried every morning as I do my body inventory to see if I can get out of bed today. But, I still plan and look forward to doing it all, one way or another.

Get your priorities in order, make the plans and keep them as much as you're able. My worst fear is the regret of not having at least tried to do something.

Thank you Cindy. I guess I just haven't been able to accept that I can't do much anymore. I started working (you know for relatives, around the neighborhood, etc at age 9). I started waitressing at age 15 and continued to work my behind off until age 30. That is when everything went down hill. At 29 I had a complete hysterectomy w/bilaterial omphorectomy (everything gone). Since then all heck has broken lose.

I grew up poor and I prided myself into making my own money and have strong work ethics. I love my husband and he provides well for us, but me just sitting still or taking a short 10 minute walk isn't cutting it. I LOVE TO WORK.

It is so bad that I continue to email my resume to companies that I would like to work for and have openings as Executive Assistants. I know deep down that I can't do that work. I know deep down that because of sheer exhaustion/fatigue on certain days I wouldn't even be able to go in to work. I just haven't been able to accept this is the way I will live for the rest of my life in this system of things.

How did you accept it? Anyone reading this: How did you accept your fate? How long did it take you?

Any suggestions (along with Cindy's) on how to get into gear instead of being all depressed about it, would be greatly appreciated.

Missy

Personally, I don't accept it as a package deal. Each day has enough trouble of its own, so each day I accept the challenge of doing what I've set out to do. I keep plenty to do in all varieties so when it's a down day, I do the down things; a mediocre day, maybe a few lighter things; a good day, maybe a big thing to two medium things.

I'd hardly consider it fate. I believe that I'm here on Earth for some crazy reason and almost every single day, a reason is put in front of me. It's up to me to face it head-on or whimper and back away.

I'm just not a backer-awayer. It's honestly that simple.

How did you accept it? Anyone reading this: How did you accept your fate? How long did it take you?

Any suggestions (along with Cindy's) on how to get into gear instead of being all depressed about it, would be greatly appreciated.

Missy [/quote]

I know exactly how you feel.

I was so depressed because none of the Docs could put a name to what was wrong with me and most said likely PPMS.

Finally they came up with CIS-MS and I thought of all the time, money and pain I had to go through with all the tests. Even worse wa the stress for DH and I as we were searching for answers.

Bummer!

I loved my job and missed working when I went on disability but it opened up a new world to me.

I got involved in social activities, went to the gym and made lots of new friends.

My humor is really what keeps me going and I just joke about what's going on with me and a couple of my favorite sayings are:

Brain damaged with MRI's as proof!
and
Well; at least I am not pregnant!!

When you start to feel gloomy make a list of the good things in your life family, friends, sunsets, flowers, and your Neurotalk friends....

Hugs,
Janie

im going to suggest something I do not listen to, the pace yourself idea. I can so relate with your work exp and attitude about work. It killed me to decide that it was over with a full time job, you just accept it, its hard to do and it sucketh mucheth.

Also, it doesnt make any sense so dont try to find that answer, it just seems to be a part of this illness. pacing myself is my next hurdle and this will be yours,

like Cindy said on good days do a bigger project on blah days smaller minor thing, that is the only way i can pace myself cause like cindy i just got to keep trying and doing, as i imagine is how you feel, try it cindys way, its a good system as for the pain of not working I am sorry