This disease can limit one's life in so many ways. And that's okay when you're alone or with family, who "gets" MG, and who you don't have to go into any explanation of why you're sitting there, unable to do anything, feeling as though you're completely useless and have no value.

I live with my Mom in a basement apartment that my Dad built for his parents. I am grateful I have a place to stay. Grateful for many things. And life is usually "ok" and I manage.

Then there are days such as today, when your area gets 4 inches of rain, on top of the heavy snow this past winter, on top of the 26 inches since April. It's flooding everywhere in MN, and many other states as well. And, joy of joys, we're expecting more rain.

Then when I wake up to my mom wet vacuuming and realize that our entire basement is flooding and that I can't help wet vacuum nonstop, all day and night, now that's a feeling that only you guys can understand: Helplessness. And everything in your life is up on something, or hanging over something to dry, or whatever—and you're trying very hard to make your legs work and not slip on the water everywhere which only makes them weaker—life is simply stupid.

We've had floods before—a bad one in 1987—but this was different. I'm older, sicker, and feeling disabled.

Today I truly hate this disease. Although I'm also grateful, because a friend of ours came over with a super vac and helped us out, even though he might not understand why a perfectly healthy looking woman is sitting down the whole time. And a sister who is helping tomorrow. If it had happened a day later, I would've been all alone to deal (everyone was going out of town).

I knew a day like this would happen when I was helpless, but now that it has, well, I never want to feel this way again. I was calm and cracking jokes, doing what I could to help, but now I'm sitting here, surrounded by little streams of water, and, well, talking to it and saying, "If that's what you need to do, water, then, by all means, knock yourself out."

No, it hasn't talked back, although it is acting up.

What do you guys do, or how do you cope, when life throws you something which you can do nothing about? Have any of you faced being alone during a situation such as this? It's very surreal.


Annie

Annie, I'm watching the news report this morning regarding the terrible flooding in Minnesota. I'm so sorry you've been impacted.
This is my first summer with generalized MG, so I'm experiencing the helpless feeling that comes with total muscle exhausten. I have such empathy, as I know all other MG sufferers do as well.
Close family and friends know and understand what you're going through and will not judge you based on how 'healthy' you look. As for any others, offer to change bodies with them for a week.
I'm finding that, as difficult as it is to accept one's own limitations, it's even more difficult to deal with the reactions of 'others' to a disease they simply cannot understand.
Hang in there girl! When the waters recede, the heat and humidity will attack. For us, it's always something.

I feel your pain. Recent storms here in the south brought power outages and trees and limbs down everywhere, including all over my yard. I couldn't even get out to go somewhere with power, first because it would have entailed dragging oxygen tanks and cpap with me. I just didn't have the energy.
There was a tree down right in front of my vehicle blocking my path. A small rotten one that probably didn't weigh much at all, but it may as well have weighed tons.
Pitiful, when I used to clear and drag limbs and trees all day long before I got sick. And, yes, I hate that feeling like people are looking at you funny because you don't get up and do your share of the work.
Oh well, I guess it's part of the acceptance thing, but that still doesn't stop me from hating it.

Annie - I feel for you! Almost as bad as feeling useless is the feeling that everyone expects you to collapse any minute. My 2 sisters have been great in helping me when I just can't help myself, but because they don't see me when I am doing better, (only during the bad times), every time I'm with them, they won't let me participate in anything. There's me saying "I can get that myself" and them tripping over themselves to make sure I don't get up at all! Or, "No, I can walk the 20 feet to the restaurant, I don't need you to both hold my arms." I must look like I'm totally helpless as they both grab my arms and hang on to me like I have no legs at all! I keep telling them I won't overdo and I will ask for help if I need it, but it doesn't seem to sink in.

Guess I just have to be grateful that I do have family who care and are willing to go over the line for me!

Hope the water has finished playing it's tricks and goes back home soon! Good luck!

Annie-

I am really sorry you have hit a rough patch. Living with chronic illness sometimes feels like a permanent, perpetual rough patch.

When times are tough I do exactly as you did and reach for my support sys who "gets it". I agree w Maggie that some times it is harder for others to cope with the new us than it is for us, but I digress.

I also do all the usuals: journal, meditate, stretch, read the latest science, watch a documentary then fall into the reality tv abyss. and watch my brain cells implode!

I'm also learning to accept that some days just stink and the sooner I go to bed the sooner Ill see the light of a new day.

Tell that water that your east coast pal is saying "get lost or else"!

Wishing you a better day tomorrow.

Annie

I too have struggled with the same issues. Just yesterday I tried to do something so seemingly non-physical I would have never thought it would make me winded/cause any issues yet I had to sit and rest for 30 minutes before I could catch my breath.

I hope it helps you to know that while you may not always be able to help with physical things anymore you are an invaluable asset to this group and while I dont click the thanks button anymore (mainly because my ipad password system keeps resetting) I GREATLY appreciate your advice, wisdom and depth of knowledge which you so generously share with the group.

Maybe those of us with MG were such hard workers all of lives that we did all the physical work we were supposed to do already?

I hope today is a better day for you. BTW I would never be able to be all alone, I have three little loving Italian Greyhound dogs (they are really velcro dogs) without I do not think I would have made it through the past couple years!

Stephanie

Annie, I am so sorry you are going through this. MG has certainly impacted our lives immensely and some days it is a battle you just can't win. Do not feel that you do not contribute because you can't physically do the things you used to. I am sure you contributed your emotional support and some days that is all you can do.

I know how much you have contributed to those in this forum. Just the other day, when I was fighting with the salad spinner and the salad spinner won, I thought of your similar post. Your stories and support have prepared me for the progress of my disease. I am sure I would have cried much harder being defeated by salad spinner if it was not for your story. A salad spinner hardly compares to a raging flood. Yes some days MG just wins and all you can do is rest, regroup so you have the strength to fight the struggle another day.

How do I cope. I decided to stop trying to win and accept my losses. I make sure I schedule something every day that brings joy to my life, no matter how backed up the laundry and cleaning is. It is important to find some balance. This disease makes us put so much energy in the basic necessitites of life, we have no energy left to enjoy life. We must force ourselves to put "joy' as a priority in our life. I hope this helps and your situation improves. I find my joy in quilting, needle work and my dog.

kathie

Annie.. I hope things are getting better for you. Has the flooding subsided?

Hi, guys. The water has subsided—for now.

The Minnesota, Minnehaha, and Mississippi rivers are all over their banks. The Minnehaha snakes its way all over the Twin Cities. The flooding in adjacent areas is unreal. Our ground was already so saturated, that the water has no place to go.

If you live downstream from MN (Iowa, Illinois, Missouri, Arkansas, Louisiana, etc.), invest in plastic containers, wet vacs, sump pumps, or whatever else you might need. Like a bug out bag! All of this water will be headed your way.

My MG knocked me out two days in a row. That's yet another caution about MG. When in the middle of a crisis, you tend to charge ahead and do what needs to be done, all the while forgetting that MG doesn't take kindly to that. It crashed me quickly, and put me to sleep. If you've never experienced a "MG body shutdown," it's a bit scary.

Maggie, Thanks. Family members can understand and be empathetic, but it's you guys who truly get it. Since this is your first summer, stay the heck out of any hot weather. And I mean have NONE of it. Keep a handheld fan (I like the 3-speed Travelon one) and water with you. Some people have cooling packs or a cooling vest.

Limpy, I so totally agree. Can you really accept a disease that is so unpredictable and turns you into a pile of mush without your permission? It's a daily struggle to be "ok" with that. And it feels good to do physical labor. I really miss that, too. Not that I could ever do it for long, but to not be able to hardly at all is frustrating!

Juanitad, Yeah, it's hard for family to back off until we say "HELP!" We still want to have some sense of accomplishment, even if we look really pathetic while doing anything. And our normal keeps fluctuating. There are times when I don't know if I can do something until I try to. Like today, when I put in a load of laundry because clothes got wet, too, and it has to be done soon or mold sets in. And then MG put me to sleep and I had to finish it later. But we need to feel useful, even if it's a smaller version of everyone else's version.

Gotananswer (sorry, I've been wanting to say that for a while!), Thanks east coast pal. That made me feel good. Many people have huge families, lots of friends, etc. to help them. I normally do, but this situation made me realize how "alone" I am. A lot of my friends have MG or other health issues. Until you've experienced a situation where you're essentially alone, it's a hard feeling to describe. And I'm not even a controlling person who is compelled to do something no matter what (no offense to anyone who is!).

I can let go of "stuff" because it doesn't matter. It's the feeling of being threatened when there's nothing you can do about it. I have coping skills, as you do, but you know how you feel when MG is fried. It's as though you're drunk or on an anesthetic and can't move or think.

Stephanie, Your words made me cry. I often don't think that what I say does any damn good. I hope that it does, but you never know. I don't think there's anything worse for me than not being useful in some way. So, thank you.

I'm so glad that you have dogs! I'm not in a place yet where I can even consider having another one. My last dog had health issues and it was very hard to cope with.

I think most people work very hard. Probably too hard. We need that balance between do and don't do.

Kathie, Speaking of salad spinners, the handle broke off of mine a week ago. That's no small thing! How else can we dry out lettuce? Even pulling on that handle and string is hard. How dare they break?!

And you can't compare the degree of any snafu that might happen in life. Instead of "It could be worse," I like to say that it could be better, and does anyone want to help?!!

I'm so grateful that I did have people to help. The friend who helped us recently lost his wife, and he is simply the kindest, most generous guy. It's that "usefulness" that helps everyone get through tough times.

Due to how I'm usually brass tacks here, you might not know what a silly person I am. I find humor in almost everything; even flooding. But when the body gets worn down, it's so hard to even think. Do you have those days when words come out as if you've never made it past the first grade, have marbles in your mouth, and can't imagine what a sentence structure is (and my dad was an English teacher!)? Sucks.

Sue, I think a flood is similar a death in that everyone is there for you initially, right after the event happens, but it's the aftermath that's more difficult. All of the overwhelming cleaning, throwing, etc. that needs to be done is what I'm left with. My mom and sister will still help, of course. But there are things that a person has to do on their own.

We had a flood in 1987 where a river of water made it's way into the house through the garage and covered the basement in four feet of water. And mud and junk. But back then, we were in a drought. The water subsided fairly quickly, even though the cleanup was more intense. Now we are soaked to the gils, and any small amount of rain can bring water in again.

I truly appreciate all of your support. I can handle even the baddest of bullies or any other emotionally stressful challenge, but when it comes to the physical ones, I simply can't. I'm not too fond of the nonstop wet vac, dehumidifier, and fan noises either!

Anyway, thank you again for being there. It's been a rough spring, with shingles, two people we know dying, flooding, and lots of other unnecessary stuff. I'm grateful that everyone here is so supportive and kind. It's truly a blessing.


Annie