Overly sensitive about my lack of energy
 

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? :rolleyes:

<---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? :rolleyes:

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? :p

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......:rolleyes:

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. :mad: Next person that says that to me......I'm gonna ask them where they got their medical degree from.

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

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!! :(

it's depressing huh frank? :hug:

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. :eek:

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. :D

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. :rolleyes:

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. :o

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. :hug:

Cherie

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

:grouphug:

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, :hug:

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".

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 :rolleyes:..and don't give it another thought..;) :p

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.

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

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. :icon_surprised: 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. :yikes:

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?

:Zzzz: :Sick: :Zzzz:

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

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". :rolleyes:

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. :D

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.....:rolleyes:. 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! :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!! :rolleyes:

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 :).

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.:cool:
I have, however, slept 75 of the last 100 hours...:p

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.:rolleyes:

Oh, I knew you'd all understand.... :hug::hug::hug::hug::hug: 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... :hug::hug::hug:

Love you all bunches... :circlelove:

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. :hug:

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..:hug:
Yes, I'm picturing wino's as well..:D

I'm sorry that you are dealing with all of this Wiz:hug: 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!

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

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. :rolleyes: :rolleyes: :rolleyes: 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.

So cool to know I'm not alone in this. :grouphug: There are some days the joking and comments can roll off my back, and there are other days where it feels like a knife in the heart.

My family was here for the holiday, and one of the days I had to move slowly because I was pushing a little too hard. I told them I wasn't having that great of a day. My stepmom said, "you're looking so good, you'd hardly know". That hurt. :( I knew she meant it as a compliment and supposed encouragement, so I didn't call her out on it. My dad did roll his eyes for me though. :)

Right there with you Wiz!! I was going to reply sooner, but just didn't have the energy. It seems lately that the fatigue is much worse, maybe the holidays and just the "thoughts" of what should be done? Sometimes it's like I'm sleeping my life away. :( The best part of that is the pain isn't felt as much then.

Ali, I'd never heard that fatigue and anger are associated in the brain. Makes sense though. The frustration of not being able to do things "like we used to" really pushes my buttons. Anger that ends up in a puddle of tears. :( :( You're a special young lady, Ali, to be able to deal with all of this.......no matter what anyone thinks!!!! :)

Think I hear my recliner calling............