[Stellatum]

When my little sons asked me to climb onto the roof to retrieve the stuffed animals they'd thrown up there, I got to say, "Oh, no, I can't! My doctor told me to stay off ladders and roofs." He actually did say exactly that. So there!

I am actually in what I recognize as a post-decline funk. This happens to me every time it becomes clear that there's something new I can't do. I collapsed on my way out of church yesterday. My husband was home sick, and my two older kids managed to get me to the steps, where I sat and rested while a friend went to get her car. But it was pretty embarrassing, etc. So, now what? I can't go out alone any more? I suppose if I'd had my walker with me, it would have solved the problem. I do bring it if I go to a store, but I've avoided bringing it to church. I'm almost never weak enough to collapse in the morning! That's my eleven-o'clock-on-the-way-to-bed state. This disease is so unpredictable.

I still can't figure out how to find a balance between not doing enough and doing too much. This recent collapse was payment for taking my teenagers Christmas shopping. I'm not sorry. We had so much fun.

Abby

[craftyRCC]

Abby, up until recently I never really looked at any benefits to having MG. Your post made me think about it!

I'm learning to be more patient, I've always been fiercely independent, but now there are times I must rely on the help of others, sometimes I might have to wait for something or my "helper" might not do things exactly as I would, so patience is a must.

I've learned not to be so proud, sometimes walking is an issue, in the beginning I didn't want to be caught dead using a cane or walker, or hold someones arm. But now I say so what, better to use a device whenever needed than end up on my behind at the store or something.

I can't predict what this disease will rob from me in the future, but it has reminded me of the greatest benefit of all, that's the strength I get from family and friends, for without them life with MG would be much more difficult!

Thanks for making me think!

Rachel

[alice md]

I think it was Susan Zontac that said that an illness is not a curse and not a blessing, but something we have to eventually find the way to weave into the fabric of our life.

This is true for MG as it is for any other illness.

We need to find the way to use our abilities despite our disabilities and remain the same people that we were. we need to find the way not to give up our hopes, plans and dreams even if it requires doing it in a different way.

and when we find the way to live with this illness, it becomes easier for those around us to accept it as well, even if they do not fully understand what we are going through, and even if it requires their accommodations to some extent.

If we find the way to give and not only take what we inevitably need. If we find the way to contribute to the society we live in, our family, colleagues and friends, and not become a burden, then we have been able to beat this beast, remission or not.

[shalynn]

[QUOTE=alice md;727713]

I think it was Susan Zontac that said that an illness is not a curse and not a blessing, but something we have to eventually find the way to weave into the fabric of our life.

[QUOTE]

I like this! It is so true. I think people can react to a chronic illness in so many ways. Many choose to ignore the illness and live their lives as they did in the past. Others choose to stop living and remove themselves from their family and friends. I think it's all about balance. I do think I have learned things from being sick, but I don't think I could ever say I was grateful for this illness. Ugh! lol

Abby, I'm sorry about your collapse after your shopping trip. I've found myself in a similar state yesterday. After a full day of probably doing way too much (see above statement regarding ignoring illness lol), I ended up baking for three hours with my 17 year old daughter and three of her friends. That fun almost landed me in the ER. Hang in there.

Shalynn

[roguepuppet]

Personally, I have rediscovered the stroll. I am tall ( 6ft) and when shopping or out running errands, I tended to almost speed walk. I enjoyed the experiences, it was not from distaste that I rushed, just a tendency to attack all things with fierceness and passion. When try to walk like that now, I barely last 5 minutes. So- now I Stroll. And I like it ;-)

[Stellatum]

Well, my "MG gives me an excuse not to climb ladders" post wasn't very serious, but I actually have discovered a real benefit to this disease. I used to be haunted by the feeling that whatever I did wasn't good enough, because after all, it could be better. I'm talking mostly about the way I raise and educate my children. There's no ceiling on that project! I have always felt guilty for the things I don't do, and there is always more that could be done.

Having a chronic illness has given me more peace in this area than I've ever had. For example, I quit cub scouts (three little boys in three different dens--it was killing me!). Instead of torturing my conscience about it, I just accepted it. Oh well! If I can't do it, I can't do it. It can be a real freedom.

Abby