What have you lost to MS?

braingonebad · 05-27-2008, 06:29 AM

Quote:

Originally Posted by Av8rgirl

I've got a vacation planned in September with my bestest friend, Laurel. Some of you may remember her (Mdolfan). We are going to Wales for a week. That's my goal, to get to September. My sister is going with us. We are celebrating both of their birthdays, one on 9/10 and one on 9/11 (that would be my sister - tough break huh!?!)

I just need to talk this out. Make sure that I am not nuts. But most of all, I want to keep doing what I really love doing -- helping with gardening and landscaping and not lose all this knowledge that I worked so hard to gain.

I know I am not the only one in this boat and, believe me, I am not looking for a pity party here. Anyone that knows me knows that. I am mobile, sometimes I get lost, but I have a really nice GPS now and keep little notes to remind me where I am supposed to be when. I keep a note pad in the car of what I am doing for the day and check things off as I get them done. It's not for lack of memory, it's because I get so tired that I just don't WANT to do them. If I don't do these things, they don't get done.

Anyway, thanks everyone for the support. It's what I need right now. You are the best....thanks.

I can't promise things will get better for you, but I can say this. I had fatigue so debilitating I could not get off the couch for months. This started in fall '02 and kept up until I got some measure of relief from provigil, even if that was temporary and med induced.

When that stuff stopped working, I was devestated.

Literally, I could move for 2-3 hrs a day, with plenty of rest between activities, until some time last year. And then it lifted.

Lately I have been almost back to a normal energy level, only needing to rest due to pain.

And even the pain is much easier to seal with since I've had these patches, but still, I'm like you - one day moving, one day toast. I get it. It stinks.

I lost my job - my sense of identity, my life outside the house, my friends, my autonomy, my income - first.

I lost my fairly clean house to messiness.

Things have changed, I've lost a lot.

So I know why you're worried, and no, you're not crazy. Slow down when you have to. You'll only hurt yourself ignoring how lousy you feel.

You will find tricks to cope - as you already know. And keep seeking meds to help overcome or deal with these miserable sx. And keep in mind that some of the sx that, while long lived, may not be permanent.

I was wondering if it was possible to die from fatigue there for a while and was surprised that I ever snapped out of it.

I can't see you giving up the landscape biz just yet, but paring down that to-do list can't hurt.

DO NOT feel guilty about that.

It's all about priorities.

Less customers when you don't feel so hot, and order your groceries to be delivered - who *likes* food shopping, lol?

Stuff you need to do and want to do go at the top of the list. Take care of you, and the rest has to wait.

And you, Sis and Larel have a blast... I'm so jealous!

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