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 was diagnosed in Feb of this year so I'm still dealing with the post traumatic stress on that! I have three boys (9,7, and 4) and I feel like I lost the ability to be a great mother to them. My ex took them to the beach yesterday and it was too hot there was no way I could go with them.

I will try and continue going back to school in the fall but I had my first bout of muscle spasms in class and freaked everyone out since everyone thought I was having a stroke.

I have for this moment decided not to date. I don't have a handle on this and don't think I want to explain to someone why I'm too tired to do anything, all the meds I'm on, and most people are worried you're going to be crippled and they would have to take care of you.

I am going to try and work so I don't know financially if this is going to be a problem but for the moment it's ok and I'm squirreling away money every chance I get, especially for my sons.

Cheryl,
For the short amount of time I've posted on here I read your posts and see how you plow through your challenges and it makes me want to get through mine. So, I very much appreciate what you do and who you are as a person.

Monique

My uncle (my dad died and this man was the closest thing I ever knew to a father) had MS. He had a pool he could not use due to heat sensitivity, but he kept it for us kids.

He'd have drinks and snacks all summer - his dd was grown, but the rest of us lived over there, lol. He had a stereo system in the carport, and he sat in the A/C in his livingroom, and we'd pop inside to talk with him.

Some of my fondest memories are of those days. So don't think missing out on the beach makes your kids think any less of you. You'll be surprised what they will remember - you will give them plenty of good times, but you have to take care of you to take care of them.



My sis asked me to join her and some other women on a Mother's day get away. I said I'd see if I was up to it. I let her know a couple of days before they left that I was.

The other women didn't understand why it took me so long to get back to her on that - they don't know me that well. I never know if I'll be up to things.

At one point, they decided to have a go at the hotel's hot tub - I declined, but did put my feet in for no more than 5 minutes as we sat and chatted.

I got such a round of vertigo I scared them all trying to walk out of the pool room and make it back upstairs.

I had to explain why that was - I just said I'm heat sensitive and give me a minute, I'll be fine. Which I was.

But I'd been doing so well, hiding how bad the elevator was messing with me that it made me embarrassed to be all drunk-walking in front of them, and mostly that it had worried my sister.



I'm used to it, it's no big deal to me, but I was mad that she had to get upset about it.

This is part of why this stinks. Never knowing how we're going to be. How other people respond to how we are.

The thing I try to remember is that nobody really knows how they're going to be, how life is going to be - if they think they do, it's an illusion. Because whatever their life may be right now that can all change in an instant. We just live knowing that every minute, for better or worse. At least we are not totally blindsided by these changes.

Yes, you're right. I just try my best in any situation. I will go back to grad. school and try my hardest to get through the entire year! The most important people in my life are my sons.

The problem with the boys is they are so used to mommy being "normal" that they truly don't understand mommy needing naps or not being able to do the things they want me to do. But, I still try for them. I told my ex who is sometimes in denial that I couldnt go to the beach that it'll make my symptoms worse and he suggested Chucky Cheese. So I will probably take them there this week so I'll have the a/c and they can run around like nuts.

I think the hardest part is being the only one with MS in my family because no one thinks I have it "cause I am the only one" and esp when I'm fine a couple months ago and now my body is breaking down a little they don't understand. Speaking of my little angels, they are fighting over the videogames and my 4 yr old is trying to eat the seeds out of an apple. Mom's work is never done!! Help!!

Monique

You know what my friend? You do what you can. You forgot to mention in that list that you usually end up helping out the installers as well - that's a big energy sucking event that you can't afford to do.

You can still do this, just cut it back and space it out a little more. People call you and use you because they love your work. If they have to wait an extra day or two...so be it. It's not worth your health. If you only work 3 hours a day, then that's what you do so that you can continue to do what you love. Remember, you're your own boss. It's not like you can get fired for not working 8 full hours every day!

You work much, much harder than you are giving yourself credit for. Give yourself a big pat on the back because many people without MS couldn't keep up with you. So slow down, relax, and take some time to have a little fun right now.

Greta - Cheryl is the toughest boss Cheryl ever had or will ever have.