Hey-

Isnt my time off from school supposed to be unstressful? To lay low?
My family doesn't get the disease..as I know all of you are quite familiar with. They want me to rake, to do yardwork, to help my mom move to her new house, etc etc and it's all starting to get me to the point of yelling at them.

I've been pretty patient w them. Whenever I say I'm tired, they say..oh I'm so tired too! Are you guys in pain from your weakness, are you dizzy from low 02? Are you constantly being attacked by your own body?

I dont get it... I just took a semester off to get better... And they just don't get it. I thought this leave would find me healthier..and to some degree it has...but also has not.


Thanks for letting me vent..sorry I didn't have more energy to reply to your guys posts..maybe when I get to Baltimore I will get on some med. Cytocypline? Does that does right? To make me healthier? I can't wait...


Happy mothers day to all you deserving mothers

Tyson,

That "Oh, I know, I'm really tired too" thing always gets me, too.

Abby

This may not be popular - but there is another side here too.


This disease is hard enough for us MG'ers to understand. But it is likely impossible for a Mom to comprehend how her teenage son can have the energy to workout and play soccer with his buddies and yet not have enough energy to help out with household's needs.

I know what your trying to say here: yet I haven't played soccer in 4 months, and when I workout I don't feel well- but I have to stay mentally well and not use drugs to deal w this.

On the other hand, I get rebellious sometimes. My neuro told me that a little exercise would be good for me. That means, in my mind, that I'm only allowed to do physical activities that are unpleasant, and not things that are fun or that I want to get done. Well, forget that. Nobody's going to tell me that I'm allowed to ride an exercise bike, but I'm not allowed to clean out that closet that's been bugging me for the past year! The emtional need to do certain things is a valid need, too (though I understand that I only have the "luxury" of fulfilling this sort of need because I am not in danger, as far as I know, of precipitating a crisis that involves breathing...)

Anyway, it's hard enough sorting this all out in my own mind. Getting anyone else to understand it sure seems like a losing battle.

Abby
who spent yesterday whirlwind-cleaning the house, and is spending today slumped in a big chair, and who is Not Sorry

Thanks for backin me up here glad you got some stuf done

Tyson, I really feel for you and am not sure what the answer is as I have a very supportive and understanding family.

Abby you are so right, if I want to garden, I'm not going to try and exercise as well, that is my exercise, 10 minutes of gardening........

I often think one way of explaining it is, the more I do and the more energy I expend, ie raking sweeping housework, the less energy I have for other things like swallowing talking breathing and walking, its a hard one to explain to some people, we do after all look so very normal.

Thank you for the mothers day message to the moms here like me. On mohters day I was working really hard to not have the ultimate melt down because in the morn I woke in a new kind of scary place. I get POTS symtpoms at times as I have mentioned that also can make me even weaker and make my chest ache and such. WEll had it in spades that day and it was alot worse and all that I usally do didnt work so I called my oldest to say I needed to go for fluids then not Monday. She didnt yell at me badly but she said that she needed a days notice and her voice sounded so burned out. She said call my other daughter. I said that she would say no. We both know this. AT the end of the day during which neither gril took me for fluids which I cried off and on about I did get some more words with oldest one and .......well lets just say I get what you are saying Tyson. My youngest is too scared and the oldest is pure burned out.

Monday I called my DHS workers supervisor as I was advised to do to ask for another worker. That supervisor yelled at me and said why didnt you call back your new agency....."heh lady I cant breath!!!!!" She was not nice or understanding and finally said your worker cant do anything more for you as the case load is too big. WOW! I said I just need another body to help. She said hire one. Good grief. She said go to Aging Services they have a cap on case load tho Aging Services told me that my DHS caseworker should be doing what I need. And so the circle goes..............

Annie59

"

I don't think that riding an exercise bike is better in any way then doing other physical activities (eg-cleaning the closet, or even walking). Did your neurologist specifically say that this is what you have to do?
In fact, I don't think that an exercise bike is good for someone with MG, as it inevitably puts you in a sort of competitive mode. It is also the kind of exercise that increases osteoperosis, as it does not involve weight bearing.
Busy house wives probably do more physical exercise then a trained athlete.
Also, exercise is something that should cause you pleasure, so that you would want to do it. And everyone should find what is good for them.
I believe that what your neurologist meant was that it is good for you to do some moderate physical activity (when you are doing relatively well). -eg, not too much and not too little. I think that cleaning the closet using each and everyone of your muscles can very well account as such. Possibly not doing it in one day, but over a few days would have been better. But, that involves a lot of trial and error, until you find what works best for you.

and yes, the emotional need to do something is a valid need, even if it sometimes carries some price.

He did suggest the bike, which I thought was very silly. An exercise bike targets specific muscles, which is exactly what I need to avoid. It makes more sense to me to aim for exercise that uses a little of one muscle, and then a little of another, so as not to sustain the stress on any one muscle. Good exercise for me is walking around the block (never alone), and this summer I will swim (but not in water over my head!). I think swimming must be especially good, because it's so gentle, and it's easy to rest while you're doing it, and because it allows you to stretch. Also, the coldness of the lake water is good for myasthenia.

Abby