Hey Wiz,

Guess what? I haven't showered for FOUR days. I had a choice.

Shower? Clean up the house? Grocery shop? Christmas shop? Wrap presents? Decorate a tree?

I didn't put up a tree, although I did get the fakie out of the closet. I didn't send out cards, although I did sign them. I didn't decorate, celebrate, call anyone, or do anything except what I absolutely had to do for the youngster. He got gifts and they were wrapped.

I still haven't showered. Good thing I am on vacation.
I have, however, slept 75 of the last 100 hours...

I'm tired and I am sick of being tired, and I tell people who don't get it to wake me up when they DO.

Oh, I knew you'd all understand.... I wish I could come over and give each of you a big hug.

I also feel guilty sometimes, like if I took better care of myself I'd have more energy or something. I manage it the best that I can and that's all I can do.

I'm glad I shared my whine with all of you...

Love you all bunches...

Now, back to veg mode...

Wiz, fatigue and pain are the two most common complaints I have. Pain causes more fatigue if I don't get a handle on it. But that's a different kind of fatigue, it just plain wears me out.

I take provigil every day and drink a lot of coffee. It still doesn't get me through the day the way I want, but oh well, whatever. It's the way it is and there's nothing I can do about it.

I used to take 400mg of provigil and would have that afternoon crash. I backed off to 200mg and don't have that afternoon crash and feel better but still deal with the fatigue at the same level. I don't get enough sleep at night but there is nothing I can do about it. It's what it is. Period.

So, I deal. If others don't, that's their problem.

I have learned to ignore what I can't get done around the house. I have a fully retired DH who has lots of free time. If he wants it done, he can do it. We have this joke about dust in the house. I am 5'4", he is 6'. He used to complain about dust on the top of the refrigerator. I told him I can't see it. If it bothers him, clean it. Same with the blades on the fans. I cannot see the tops. If it bothers him, clean it.

He is slowly, after 33 years, learning that I am not his mother. I don't pick up his dirty laundry, I no longer DO his laundry. If he wants clean clothes, he can do the wash. I am lucky if I can get my own done these days. I work full time, he doesn't. He plays with his friends at the Model Railroad Club.

So, yes, Wiz, you are not alone. You are a member a very exclusive club. Feel honored.

Hey Wiz?

I showered!

I'll take that hug now! LOL!

I'd like to take this opportunity to thank you from the bottom of my heart, RW..
Yes, I'm picturing wino's as well..

I'm sorry that you are dealing with all of this Wiz and hope you feel better real soon.

I don't have MS but have CRPS (Complex Regional Pain Syndrome) and possible Fibromyalgia and one of the main symptoms of both of those conditions if lack of energy and exhaustion.

When I am feeling really tired and exhausted, I often feel like you and lash out at anyone who says something. They might be trying to say something to help me but most of the time, I think that they are doing it just to annoy me. My mum understands my illness thankfully but my dad doesn't and he is forever telling me, "If I just got out more" that I would feel that way but it just doesn't work that way and it is often too much for me to get ready to go out!! My dad and other relatives are forever complaining at me for not going out and it REALLY annoys me and gets me so angry and aggitated and I often can't control myself and just end up saying something to them!!! I honestly think that they will never know what MS or my illness is like unless they have it themselves.

My nanan had Progressive MS and she was the same as me, just couldn't go out as it was too much for her (she was wheelchair bound) and people always used to complain at her or used to say that she wasn't trying hard enough to overcome the MS!!!!

I'm not sure if this applies for MS as when my nanan had it there wasn't much research but when I spoke to my doctor about my illness (CRPS), he told me that Neurological conditions often affect the Limbic part of the brain and that is why we often feel tired and angry. I mentioned it to my dad but he still doesn't "get it" and it really frustrates me!!

Please know that you aren't alone and we are all here for you because we DO understand!

s Wiz....Im amazed at what you CAN do...hang in there

Ali, that's what irritates me so much....people who think it's just a "mind over matter" situation and I should just work harder at trying to "overcome" my MS. There's not enough "eye-roll" icons for me here!!!

What you said about playing pc games !!!!!

Mt dh gives my what-for about that too, and I told him a gazillion times, I do that when that's all I can do. Grrrrr!


Lol - not enough eye roll icons!

Between the pain and the fatigue, honestly I think I'd take the pain. I can work through at least some of that. There is NO working through being 90% aslleep.