Yesterday I played soccer, i know it may have been stupid but i couldnt help myself.

It was quite cold out yesterday,i wouldnt have played if it were hot.

But today i forgot i was supposed to help with some meeting thats going on at my house, some senior forum class for next year that my uncles mom is directing, and im babysitting the kids while they eat and talk about it.

I came home and directly took a nap, knowing i would be tired. I was tired because it was 93 today and it was killing me. I wasnt tired until it started to get very hot.

So i was sleeping, woke up to my aunt yelling at me about how dirty my room is, and that how disrespectful i was, and that I knew i had to babysit tonight and i shouldnt have played. She was talking about it like she knew how it felt. It was pissing me off.

I feel okay now, i wasjust very irritated and needed sleep sand she was just acting like she knows what its like to live with this.

Hope your all well.

Tyson,

I think that if you lived in my house, or if one of my kids got MG or something similar, I would find someone else to babysit. You have enough going on in your life that you don't need this responsibility. (I suppose an exception to this is if your aunt and uncle don't have enough money to pay for babysitting, then I see the justification in asking you, but still they should treat you with respect and understanding.)

I know I am having a hard time doing everything I am supposed to. I used to have everything in my life organized including my house and I was always on time to every event...now with MG my room is a mess too and I only clean the house when I have to...I am not so organized now because I just can't keep up with everything. And it seems like I am always calling people with excuses why I just can't make it on time (or at all). Everything I do takes more time than I expect it to.

I feel bad for my kids, since they have to do more work around the house because of my MG and also we don't do as many fun things as we used to.

I don't think those of us with MG have any choice other than to slow down our lives and do less.

And my MG is not as bad as yours from what I can tell, although I do have many bad days, I haven't had to go to the hospital. I think your aunt should be more understanding and give you time to heal and figure out how to live with MG. I understand her frustration, but that doesn't justify giving you extra responsibilities and yelling at you. It is not your fault that you have MG.

I hope your aunt and uncle learn about how MG effects you so they can be more understanding.

Take care of yourself.

They definetely don't have any problem with money. Their usual babysitter is out of town. I am so weak now. I was supposed to go out w my friends but I'm having trouble breathing. So I'm going to bed. God I hate this

Desert flower- thanks for your response. I'm sorry to how much you've lost. It's really not ok. Please be strong and safe.


Goodnight.

Tyson,

One thing I've discovered about this kind of disease is that it demands all sorts of new energy to manage the problems it brings--while at the same time taking away your energy. And one of those areas that demands new energy is the new dynamics in family relationships created by the disease: new balances and understandings to work out, all these new adjustments to make.

Human relationships are always sticky even at their best. Over the years, you work stuff out. Then comes something new, like a chronic illness, and you almost have to start from scratch. All the rules have suddenly changed. It's almost exactly like (I'm doing this too) taking in a family to live with you. All sorts of things that used to be automatic in your life have to be re-established. We have no idea how many unwritten rules we've developed for living together, until the rules have to suddenly be re(un)written!!

We myasthenics think a lot about muscle strength (and the lack thereof), but just as valuable, or even more so, is emotional energy. And having a chronic disease saps that, too.

I'm constantly trying to find a balance here between giving too much to the disease and not giving enough to it. I think you will know what I mean! You played soccer the other day. I took my kids to the zoo for the same reason, knowing I might be kicking myself later but feeling defiant towards my illness.

I'm not quite sure what my point is here. Maybe I'm just saying that recognizing how much this thing demands of our energy emotionally, not just physically, will help us to go easier both on ourselves and on the people we live with. We're all making it up as we go along, and it's to be expected that we get it wrong sometimes.

Anyway, I wish you strength in all areas.

Abby
who just took on a huge manuscript to be edited in two weeks, forgetting the sort of eye- and neck-strain that sitting at the computer causes....

tyson, be patient with people, they just dont understand.
dont hold it against them, especially your loved ones.
they will come around eventually.

I can woodwork for hours upon hours some days, then hit a wall, and go upstairs and pass out flat on my back for hours. then my buddy will call and complain to me"you have energy to work in that hot garage all day but when I ask you to go out to a game youre too tired or weak, how convenient your illness is"

I laugh at him, and tell him when Im feeling stronger Im going to smack him around, and then we laugh about it.
Its just as frustrating for all your friends and family as it is for you alot of times, although you are one suffering with the disease.
I have similar issues with my nieces, children, sister in law, brotherinlaw, and alot of friends. most now always say, hey, if youre feeling up to it, wed love to have you or come out with us.

just be patient. and forgiving. (and tyson, I know its not easy, not easy at all)