Mentally angry h
 

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.

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.

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.

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

perfectly correct. This type of exercise may or may not improve your muscle strength (depending on the severity of your illness and how much stress your muscles can sustain), but not less important it will help you learn how to plan your movements so that you can do what you want much better.

It may be a good idea also to work with someone and not do it on your own.
I had an excellent teacher. for more then a year, in twice weekly sessions, we meticulously learned each and every one of my muscle groups. (she used a system called movement notations, which was originally structured for choreography, but is excellent to document any type of movement).

I learned to use my muscles in such a way, that I had significant improvement in my functional level, despite gradual worsening of my illness.
(that I stupidly ignored, being reassured by my neurologist at that time, despite the concerns of my pulmonologist, but that's another story).

My old dr, dr. Juel suggested that biking and swimming are two of the best exercises for mg because they are not concentrated. I don't agree w biking..if I did that my right leg would be dead within 2 mins.

I also agree that doing things such as these are essential to the well being of ones mental status and even though they may have negative repercussions for a day or so, doing them can greatly help the negative attitude change to a positive one.

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

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Alice, what does your pulmo expect or want around expercise and activity?

was gonna take this out and make separate thread but today that is beyond me.

Annie59

When I am cold I can do amazing things. My body is totally different under the right circumstances with cold. On 12/1 it was about 45 degrees here and it was very sunny and I set out to walk a bit and that bit turned into at least 2 blocks, More I think. But that is a miracle for me. Being so deconditioned which I have gotten as the total reason for my weakness at times, this truly surprised me and vindicated me in what I knw about my body. I noticed from my calendar that has health issues on it that I had stopped tanning much if at all for about 2 months. The tannin gets me too hot no matter what I do and that is a drag on my general strength.

A cool lake to swim in sounds good. I am a walker esp in a park. I rehabbed myself that way after the low vit D was found. Human body is amazing and a puzzle. A difficlut puzzle this week.

Annie59