[tysondouglass]

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

[Stellatum]

Tyson,

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

Abby

[suev]

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.

[tysondouglass]

Originally Posted by suev

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.

[Stellatum]

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

[tysondouglass]

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

[redtail]

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.

[busybusy]

Got you there to Tyson. You have to look like death's door for most people to understand that you are sick. People like to see the sickness. It is frustrating and I don't know if anyone will ever understand. Sometimes I don't even understand. I went dancing one night. I rested some and then danced some. I love to dance. Did I pay dearly the next 2 days. I did. Then someone said to me, well if you can go dancing, I don't see why you can't do so and so. No use to even explain. Sometimes, I get so tired and am determine to do something I enjoy even though I suffer the consequences of it. The last time I danced, I vowed never to dance again. As I said, if a person can't see it, then they don't believe it. Take care and I hope things will work out for you.

[alice md]

Finding the right balance between activity and rest, pleasure and duty, is very hard for everyone in the modern competitive world. It is nearly impossible for someone with MG.

Those that don't understand your difficulties, are many times those that find it hard to balance their own life. They may not be ill, but many times they are very frustrated, because they feel they work too hard, don't have time to enjoy their life etc.

[alice md]

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!

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.