Oh, Wiz, sweety, I used to beat myself up over the fatigue, not being able to do the things I used to do and those inconsiderate neanderthals, who thought I was lazy..

Now I just say "kiss off" to those who still don't understand or believe me ..and don't give it another thought..

It's still hard especially during the holidays.

hey, yes..it is hard...and we understand and HUGSSSSSSSSSS

I find it hard, when I am doing so much that I do, then on off time when someone mentions why cant you such and such?? especially being undx..

anyhow, just know we care and understand and glad you vented here.

HUGSSSSSSSS,sarah

((((Wiz)))) Sorry your having a hard time. Wanna bring hubby over and show him what ms can do to a person? Maybe seeing Jim will help him realize that you are tired and even if he means what he says as a joke, it hurts. I've been known to say things to Jim too and wish I could take it back but it's human to screw up. The important thing is do we learn from our foot in mouth disease?

It's good you came here to vent because I am sure he meant no harm. It's harder for us spouses to sometimes get it if we can't feel it, etc. Trust me on that. I have 20 + years experience being the spouse of someone with ms. lol He'll come around just like we all do and/or did. I wont blame him because he's a man because anyone, male and female can NOT get it. Jim's mom is the worse case of not getting it I have ever seen.

You know my number if you want to vent. We still have to do that gtg soon!

I feel guilty more than angry, really (though I DO save that anger for MS, and know there's a special level of hell reserved for it). There are so many things I want to do, or need to do, and I barely scratch the surface before I'm completely worn out, dizzy, and barely able to walk. It frustrates me more than anything..

Hi Wiz
I totally agree with you and all the others above who have shared their stories. I think fatigue is the worst symptom and the hardest to manage.

They say exercise or spread your time around the whole day, or don't use up all your energy in the first 4 hours, bank it. Well they can say all they want, even these MS experts because they haven't a clue what the true MS fatigue feels like, only described to them.

In the past I was a Super-Mom too. I did everything, including working and taking care of the house, kids and shopping. My DH did work a lot of hours so people got so used to me doing it all.

Well, now I can't, and those that knew me, including my kids, just don't get it. I say I can't, I am sorry, maybe tomorrow. They say, but Mom I'm tired too.

Well tired, and totally exhausted, our two different animals. I feel tired when I get out of bed some days. I'm exhausted in a few hours. Sure I could nap, but it just gives me a few more hours of energy and people wonder why a healthy looking person, not 80 years old, has to nap to get through the day.

Wiz, in a way I feel mad and guilty too. My DH is healthy and just itching to go out and do this or go here and there.. and I can't. I haven't his energy. I tell him go for your bike ride, I can't balance anymore. He can go miles. I think I hold him back.

So I have a double-edge sword feeling. One, that no one has a clue to what fatigue with MS REALLY is like, and two, that I am holding back a very active DH and Family who want me to share their activities and I can't.

Okay Wiz, I made this my whine too. Pass the cheese and crackers please sweetie. Heavy on the whine.
Lady

edited for dumb things.

yes, Wiz... I feel defensive and oversensitive...

mostly about the dirty floor, the dust, and the cobwebs.

but I don't really have to "bite my tongue" because I simply don't have the language skills to *explain* my illness to the villagers here.

since MS is unknown in the tropics, people will just have to think I'm a lazy scumbag, LOL !!

I have learned two words: enfermo y cansado (SICK & TIRED)

so, I say: Siento enfermo y cansado. and just hope that explains the condition of the floors...

once I use up the two or three good hours I have per day, that's IT, unless there's an emergency or something.

luckily, it's a local CUSTOM, (practically engraved in stone), to "indulge" in a siesta every afternoon around here, eh?

I'm lucky, because now people can actually tell something is wrong with me!

I used to find myself trying to explain things like fatigue, balance, etc. It still drives me a little crazy when someone will say, "you seem to be walking so much better" or some such thing. I know that they are just trying to pass on their positivity to me, but I have to bite my tongue to not respond "actually, I'm not walking any better than I was the last time you saw me".

I don't feel guilty anymore that my house isn't dusted or the floors aren't mopped. I never have kept a dust-free house because it seems like such a waste of time and effort only to have things become dusty again a few days later. Anyway, the only thing I try to do is keep the toilets, sinks and shower clean.

I also try to run the Swiffer over the floors every day because of the massive amount of hair that comes off of Montana.

I don't work, and don't feel the least bit guilty about that. I read a lot, knit, and spend a lot of time on the computer. I love to play mindless games, it's quite fun!

I need to work on the "not feeling guilty" part......I mean, WHAT do I have to feel guilty for? But, I do!

One thing that is really getting annoying to me is when my oldest son asks "how are you feeling today, Mom?". Now, that shouldn't bother me.....I should be thankful that he even asks.....but it's asked as he's running out the door to work or to see friends or when he doesn't have time for me to really tell him how I'm feeling. Like I would, anyway...... Sometimes I just want to say "Why do you ask? Do you have ten minutes to sit down and really listen to how I'm feeling today?" Usually I just say "fine" and he goes on his merry way. Plus, I don't want to worry him and/or seem like I'm constantly complaining.

I'm never gonna feel "fine". I can feel "OK" enough to be able to sit on the couch and watch TV. Or "OK" enough to be able to get dressed (if you call a sweatshirt getting "dressed"). But, do I want to go to the Mall and spend several hours window shopping, stop for lunch and then go to a movie before coming home....like I used to do......then YES I DO but NO I CAN'T!! And it makes me MAD!

So, forgive me if I seem impatient when asked "how are you feeling today?". It just touches a nerve.....the one that's not affected by my MS!!

Me too, me too, ME TOO! I'm harder on myself than anyone else though . Right now dh is waiting patiently for me to gather up the energy to shower and drive 20 miles to pick my car up from the dealer. I feel like a useless sack of poo sometmes. This task alone will be the only the thing I accomplish today....I REALLY hate that. Thank goodness I'm not working anymore. When I came home from work I looked like a zombie from 'night of he living dead' lol. Ahhh, life goes on...around me while I watch .