No, you really DON'T understand how tired I am!

[CougarMama]

Ok, I need to let off a little steam so here goes.

My mother (an RN) has always been slightly competitive with me. When I got my MS diagnosis, she told me that maybe that was what she had since she is tired all of the time! Whenever I talk at any length with her I have to hear how tired and fatigued she is from work, exercising, etc., and if I mention that I'm not exactly bouncing around with energy she says "I know, I get tired too." no, no no. It's really NOT the same!

She also has a tendency to say such positive things as "none of my friends or family can take long walks with me" (she likes to walk 5-6 miles on weekends) and "I've never had all of the problems you have (health wise)." just drives me crazy!

Anyway, I'm done now. I'm just shocked by how insensitive family can be! My husband mentioned last week that he just doesn't know what he would do with himself if he couldn't run 3-4 miles a couple of times a week. HELLO?!?!

[dm0329]

Boy can I relate!

I get the "you're lazy" or "it's because you don't have an exercise route" quips quite a bit from my family too. No one gets "it" (fatigue, balance issues, weakness, etc.) and it burns me up also!

Feel free to "blow off as much steam" as needed. I find the fellow MSers can relate and empathize!

Hang In There!

[mjan]

Hmm.. that IS insensitive and must be hard to take.
HUGS for your pain.

When your mother's (or others) insensitive comments are made, have you told her right then and there how it makes you feel??

Have you helped her learn how NOT to make things worse? I believe folks need to be taught how we want to be treated (unfortunately)..esp if they tend to be self centered. Or.. do you just let it go?

Of course your mother is tired as a nurse, but the kind of fatigue WE have makes it impossible to function. I used to have to leave early on Fridays as I could no longer even hold up my head from fatigue!!! Or.. I would go lay down..then come back. No one commented. I was too tired to even THINK!!

Hang in there.. vent whenever you need to.. WE care and know how it feels hon~

Warmly, Jan

[Myoak]

I am so sorry that your family may have an inadequate understanding of MS. You probably look much like you always have so judging by appearance nothing seems particularly unusual from their point of view. “Just kick it up a notch like everyone else does (like me for instance) and things could go better for you, too.” I don’t know whether to call such attitude insensitivity, ignorance, or both but I’m going to guess ignorance, at the risk of being unkind.

Education takes time. MS is a terrifically difficult disease to understand. A doctor at Rocky Mountain MS Center frames it this way, “what we see is only the tip of the iceberg”. We cannot easily see beneath the surface in MS and know exactly what is going on. Plus, there is such a range of severity between individuals with MS; it is also a range which can vary and change within individuals, sometimes daily. Good days, not so good days; no fatigue at 10am but then it hits you like a ton of bricks an hour later. No mystery that an unschooled person would have difficulty understanding something they have never seen before. Something they have no experience with.

There is so much to learn and we all learn more slowly than we should. Your mother and your husband love you. Be patient and give them time. Their comments may very well reflect a desire to help you, a longing for you to flourish and be well. Nothing they say is meant to hurt you, even if it does. They want to see you well again and don’t know exactly how to phrase it. Best Wishes!

[Thinkimjob]

I didn't know what tired really was either, before MS.
You can't understand it, until you have it.

Some people are better at being sympathetic than others.

I've given up trying to explain to the other lot - all you get is a lecture on vitamins, 'you should try harder', 'my grandmother's 95 and she still walks 5km every morning' and 'you're just giving in'.

I'm not giving in and I am trying as hard as I can. I'm exhausted because that's what MS does to you.

[ars320]

Wow, that would make me crazy.

I have my sister repeatedly telling me that I would feel better if I just got more excercise. Not sure when I could this theoretical excercise, since I am at work 11-12 hours a day to get things done, and come home 2 toddlers. I often feel like some one slipped me some Benedryl.

[mjan]

Originally Posted by ars320

Wow, that would make me crazy.

I have my sister repeatedly telling me that I would feel better if I just got more excercise. Not sure when I could this theoretical excercise, since I am at work 11-12 hours a day to get things done, and come home 2 toddlers. I often feel like some one slipped me some Benedryl.

Hey, why don't you ask your sister to babysit while you take a nap or go for a walk? Just sayin..

Hugs, Jan

[hope32]

Those comments can be so annoying. I'm sorry.

[celloyogi]

Of all my MS symptoms, fatigue is probably the hardest to describe to non-MS people. It's not just tired - because they are super-tired, too. It's not just muscle fatigue - because wouldn't you know it, their muscles are so sore from all the running around today? It's impossible for anyone else to really understand our MS fatigue.

I've started describing it ala lumberjack: Being tired or exhausted is how the lumberjack's arms feel after he's been chopping down trees all day. Having MS fatigue is what it feels like when the lumberjack's arms turn into trees.

I need to work on the analogy. I've been doing a lot of "it made sense up here" [points to head] "but somehow made no sense out here" [pointing out of mouth]. Who knows why? Very irritating.

[Sir-Voor]

I can totally relate, BIG Time!

My wife (a nurse) for years most have thought I was exaggerating or faking my MS fatigue, until we went to a MS seminar by MS specialist.
After the seminar she was saying that she did not realize how real and debilitating MS fatigue was.
Although she does not understand it, she accepts it.
Just like I accept that her migraines are real even though I don’t truly understand them.

I recommend taking your family to a MS seminar.



Speaking of family, right now I’m extremely aggravated at my little sister.
Even thou I’m the only one in my family that has MS, for years I have telling my little sister to have her vitamin D level checked.
Last Sunday I called her to wish her a 42nd birthday, and she told me without her knowing her doctor had her D level checked with her last blood test.
And guess what, it is low!
So the doctor has her on 50k weekly, plus 2k daily. And to top that off during that call she says she too tired to exercise and often too busy and misses you daily 2k of D.

Maybe because I’m doing so well and can put on an upbeat and positive front, she does not realize how *@#$/*! MS is.
I don’t want to needlessly scar, but I really don’t see any other option but to tell her how bad is it and can be.