[QUOTE=Av8rgirl;287733]
so maybe I just need to kick back and give myself a break????[/QUOTE]

Yes, time to recharge your batteries, girl.

Somehow I think that is going to be a big challenge for you, to slow down and give yourself some time to recoup. Hugs to you, Cheryl!

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!

cheryl, I've been fighting the ugly fatigue since December. It just hangs on and it's awful.

you have to take one day at a time or 1 hour at a time.

I'm still trying to learn to listen to my body. I am sorry you are going though this.

This disease shows No Mercy.

I almost didn't even read this thread. I try to avoid "this is what I DON'T got", because it's very easy for me to dive in and wallow there. But then I realized: No. Every once in a while, in the company of people who understand, you need to just face the reality of what you've "lost". How can you re-group if you are in denial?

I try (don't always succeed) to balance the loss with a "but", and I see that you folks are doing that as well. For example:

I can't walk around the lake any more, but I can still walk to work.
I can't walk (safely) without a cane or rollator, but I can still walk.

So far, I have had mostly reductions, as opposed to losses. I can't do things as well, as often, as fast, as spontaneously, etc. But I can still work, see, drive, walk, talk (and talk and talk), and sometimes even think. Thank God.

I so agree, B2Y.

I can't think about it to the point where it depresses me. But I do think about it enough to remember to enjoy what I still have, to fight to keep what I have, to look for more, to see the window that opened when the door closed.

First, let me send a hug your way. This disease sucks!

I have lost my career that I spent many thousands of dollars being educated for. I have lost most of my eyesight. I used to be able to read day in and day out, now I use books on tape. I lost my ability to drive myself anywhere. I really hate that! I used to love being in the car. it was my freedom, my escape, and now, its just a way to get to the MD or pharmacy. I lost a large chunk of finances by being forced to retire. I lost friends who cannot adjust to my new needs. I lost stamia and the ability to stay out till one am, or walk up the mountain to have a picnic. I no longer run marathons.

I gained the true knowledge of just how much my husband loves me. He LOVES to listen to those books on tape with me. I used to read alone, now we enjoy stories together. When I am able we take a leisurely stroll down our own block. I have gained a chauffer. No more struggling for a parking spot or worry about a hot day taking my breath before I can get into the store. My chauffer drops me off at the door. I cant climb mountains anymore, but I can watch videos of mountains with my family. I dont go out to eat at fancy places anymore, but we cook together as a family. I have learned that my bed doesnt have to be made perfectly in order for the day to begin. Vacuuming can wait till I am able to do it. Laughing and being with my family is now my focus, not taking care of others.

I hope you feel better and are able to stop and smell some of those roses while you are in the slow lane.

Cheryl I am so sorry this is such a rough time for you.

You have met me before. You saw how badly I was walking. Now I am doing so much better. You wouldn't even believe how much improvement there has been. I really didn't think it would ever get better, but it did.

I really hope your loss of stamina is temporary and that you will improve dramatically.

I personally think that MS has taken heaps away from me in the past 12 months, and to be honest I wasn't ready to give away any of the things that it so savagely took from me.

Back in the late 60's I started work as a student nurse (when I was 17 years old), and continued working for 40 years once I'd registered (yes... I AM OLD!). In those 40 years, I went up through the ranks of the nursing ladder experiencing just about every type of nursing there was, and landed on just about all the rungs of the ladder there were as well. I worked as nurse in charge of many wards (surgical, medical, palliative care, critical care,) and also worked as deputy charge of a large hospital along the way.

What I loved and did best, was working on the wards caring for sick people. I worked as a lecturer and clinical teacher of student nurses in colleges and hospitals which I also liked, and I worked in hospital administration before I finally went back to hosital ward work..... once again doing what I loved most.

Nine months ago I had to give it all away.

To me, I feel that I've lost my indepenence with no job, and now I can no longer drive. My short term memory loss has made sure of that. I'd be too scared to drive the car now as I'm not sure I'd remember my way home, let alone the rules of the road. I've not driven the car for about 10 months now, and that's not a good feeling.

Then there's my mobility. I now walk with a cane, and I have a rollator for bad days. With that comes a loss of self esteem feeling. On a bad day I put the Handicap Parking sticker up on the front of the car and people see this youngish person and sneer down their noses at me! Why do we have to put up with this #$%@, and why do they make us feel bad about using these stickers when they're issued to us for a purpose?

The list goes on and I mourn for the loss of my career, but the thing that hurts me most is my grandbaby.

I have a beautiful grandson, and I'm too frightened to pick him up in case I drop him. The thing I hate the most about this rotten disease is not being able to be a normal, cuddly grandma, like most grandmas are.

I'm sorry Cheryl, and others who are going through this as well. It sure ain't one of the good bits you find in the MS literature. Mega hugs to you all.

Thanks Anne for sharing your story. I know that I am not the worst person with MS nor am I without symptoms either. But after 7 years dealing with this disease, I guess it's finally rearing it's ugly head. Either that or there are other things in my life that are finally on a collision course and I seem to be unable to get a handle on all of it.

Maybe it's that "out of control" feeling I have at the moment. I had a situation recently that put me on the defensive and I didn't like how it made me feel. There was no reason for it other than I felt as if my credentials were being challenged. It was petty and immature on my part and the other person was probably totally unaware of what had happened. I decided to use it as a learning experience. One of my mentors always reminded me that when you stop learning from those around you, it's time to stop doing what you are doing. Of course, he was a flight instructor and he was referring to students, but I think it applies to any field. You can always learn something from students or colleagues if you want to...I felt on the defensive and failed to see the forest for the trees. I wasn't ready to give up my leadership role but realized that sharing might not be that bad.

We all have to readjust. I think maybe I am going through another major readjustment phase, but this one seems to be a bit more major than any one before....I just don't like it.