[ewizabeth]

Hi Everybody,

This is just a combination whine and also question... Do you find yourselves being very sensitive or even defensive about your lack of energy due to the dreaded MS?

I feel frustrated if somebody even hints that I can be doing more than I am, because I look pretty normal, but I have the deadening fatigue all the time.

For instance, this morning I got up and sat at the computer playing a mindless game, waiting until I could eat and take my pills. (I have to take a Nexium when I get up and can't eat or drink anything for an hour afterward.) Rocky, our kitty was whining for someone to play with him since DH and I had both slept until 9:30am. I asked DH to play with him, and DH teased that Mommy would do it but I'm wasting time playing silly games. (That hit a nerve.)

I reminded DH that I can't get up and start drinking coffee like he can, etc...

I thought about it then and I haven't had a vegging day for at least a few weeks! Then I reminded DH about that. Even he forgets that I have the MS fatigue.

I finally get to eat in the morning then take my pills. Many days I can take a Provigil to keep me awake, but if I've overdone it I still sit most of the day. I make myself exercise two or three times a week (use it or lose it you know).

I'm so sensitive about this I think because I used to run circles around everybody elseI know, now I veg out a lot of the time and just try to stay awake and get some things done each day.

So... does anybody have some cheese to go with my whine?

[Curious]

<---monkey hands wiz a slice of her baked brie. (baked in a crescent crust with a cinnamin brown sugar carmel sauce inside)

it sucks wiz. i think this is the same for us in chronic pain. we look good...so how come ya can't do what "normal" people do?

i end up forcing myself to do everything and pay for it for days when people aren't around. pretty dumb huh? do i sit here today with bone grinding on bone in back and my one leg all swollen.

can i join your vent party? huh? wiz? huh?

[Kitty]

I can totally relate to what you've said, Wiz.

Some days I can do more than I normally would do in one day. Some days I'm doing good just to get up and get showered.

My son made a comment one day about the treadmill in my room. He commented that he had moved it for me and wondered if I was "ever going to use it". That struck me wrong. I told him (rather sternly) that I use the treadmill when I have the energy to......otherwise I let it sit. I told him I didn't realize he was keeping track of when I did or did not use it. I think he got the message......

I get so tired of explaining (or trying to explain) fatigue to people. And I get so tired of rude people who want to tell me that if I just got moving I'd feel better. Next person that says that to me......I'm gonna ask them where they got their medical degree from.

[weegot5kiz]

I think I am harder on myself about fatigue than anyone else has been and yes it bugs the beejeevies out of me, I use to maintain 20 hour days 7 days a week now going to the store and maybe something else knocks me out, I hate it

[Jules A]

I push myself so hard that if poor DH dares make an offhanded comment I nearly snap his head off. I have to watch myself because there are times when I get to be a bit of a maryter and kind of feel like I'm the only one in the house that is fatigued...even though he can't be nearly as tired as I am, lol.

Hate this disease!!

[Curious]

it's depressing huh frank?

the first club hubby and i owned was a 35,000 sq ft 2 story monster. i could go up and down those stairs dozens of times a day with no problem. back and forth all around the place for 12 to 15 hours a day. it was a breeze.

now our gym is half the size , 1 story.

i don't even train there. training the few i do here, where we live, wears me out. about 1000 sq ft little gym. doing our stairs 2x a day...ugh.

only one time has my husband even slightly grasped my pain issues. he put his ear to my back and could hear the bone grinding.

[lady_express_44]

I think I was really hard on myself for the first 12 - 14 yrs, but I have given in to my reality over the last 3 or 4. I don't mean that in a "negative" way; more like I am finally A-OK/at peace with who I am and what I am capable of.

I don't even work any more Wiz, and sometimes I do virtually NOTHING all day. I'm still ok with it.

I bring home an income, as much as I did before, so I dare anyone to complain. I am entitled to do nothing, and my doctors, the government, my LTD company . . . they all agree.

I'm going to be a little sexist here, but I think SOME men can be VERY unfair about issues such as these, at the best of times. As a single mom, I raised my kids, worked full-time (with MS), did all the shopping and cooking, was up many nights with the kids when they were babies (and/or any of us were sick), took them to all their doctors appointments, did all the yard work, fed and played with the animals . . . EVERYTHING!!! I have run into many men who, when they work, think that is virtually ALL they have to do in a day.

I will cut them a little slack in that they just don't see the need for things to be as clean, or "fussy" as most women want them to be . . . and they probably have a point in that regard. I've learned (since the MS got worse), that it really isn't necessary to do a lot of things that I used to . . . so maybe we are too demanding sometimes too.

BUT, there are things that are NECESSARY, or can't be left "forever" . . . yet as long as a woman is going to do it, why should they bother? This is often when they throw the nasty comments at us . . . cause they don't "wanna" do it.

Frankly North American men are the WORST in my experience. I lived in New Zealand and OZ and they are WAY better there!!!

You have MS, you are working, and I'd almost be willing to BET you do far more than your share around the house too. Don't let him get to you.

Cherie

[suzyqz_2007]

One of my biggest problems is fatigue and it drives me crazy. I'll admit that I am very lucky and thankful that dh understands (probably more than I give him credit for) and does his best to see that I rest when I need to.

I used to wait tables, sometimes 10-12 hours a day and still be able to go out after work. Now I'm just happy to make it through a day without a nap! If my house doesn't get cleaned or the dishes washed it's not the end of the world. The most important thing is that I take care of myself. Yeah it does suck that I can't do what I used to but I'm learning that I have to deal with it and if someone doesn't understand then tough! I know better than anyone what I can or can't do now and I'm not wasting my energy trying to explain because chances are they really don't want to understand anyway.

I'll be 42 next month and I'm just starting to realize that I really wasn't born with the title SuperWoman and that cape I've been dragging around, I now know to use it to cover myself when I nap! LOL

[weegot5kiz]

you are right Cherie when i first started at the other forum I was appalled by what some of the MS'ers went through with their spouse, ask deb I use to complain how can anyone be so insensitive, guess its easier to say you are lazy instead of facing reality and trying to be compassionate, like I said this behavior appalls me,

Wizzie bethy cathy dont be so hard on your self you got V time coming enjoy relax and catch up on rest,

[Blessings2You]

Sometimes what other people are thinking doesn't bother me as much as what I THINK they're thinking.

But fair or not, people do make judgments and assumptions based on appearances. I often have to literally bite my lips to keep from explaining myself.

From the time my niece was a child, her friends and family were ALWAYS on her case because she just kind of sat around, you know, lazy-like. When people said, "Come on with us, join in the game, let's go outside and play", she would say, "I don't feel like it, I'm tired." Everybody, including her parents thought she was just lazy and would feel better if she would just DO something.

Imagine how everyone felt when her second child nearly died as a newborn, and was found to have a form of muscular dystrophy...just like her mother, my niece.

That's right, all those years she had been undiagnosed, and labeled as lazy. And all along, she really DIDN'T "feel like it".
She looked perfectly fine. Like a normal, healthy teenager and young adult.

I'm glad, of course, that I don't "look sick", but sometimes it would be easier if I looked sick on those days I experience mind-deadening, crushing fatigue and look "fine".