[Erin524]

I've been trying to change the sheets on my bed for the past half hour.

I only just now got the top sheet on. I still have the blanket and the comforter and then the pillows to do.

For some reason I couldnt figure out how the fitted sheet fitted.

Finally got that. Had to sit on the bed for about 10 minutes to recharge.

Got the sheet out, and couldnt figure out how to tuck them in under the mattress. Figured that out. Sat on the bed.

Got the rest of the sheet straightened out...and am now sitting on the bed resting.

I think I'll be sleeping on the bed, not going to unmake the bed just to sleep in it after I've spent so much time getting it made with clean sheets and clean blankies.

It's just pathetic that I cant make my own darn bed without having to rest on it every 10 minutes for another 10.

I'm soooooo tired now, and I'm only half done!! (and the Hug is coming on now...ow!)

[Friend2U]

Would it help to make the bed of a morning. Seems like the hug always hits me worse at night, so I've been trying not to do anything to aggrevate it.

A lot of help that is now, huh???

I'm so sorry for your pain. Hope the hug will ease up for you. Wish I new the magic trick for that. But I'll send up a little prayer. That can't hurt.

[Natalie8]

Hi Erin -- I'm sorry you are feeling tired and the monster hug is coming. Even though it was a pain to make the bed you should definitely sleep in it-- don't you love the feel of clean fresh sheets? I do. If I had the energy to change the sheets, let alone wash them and buy enough, I would love to do it everyday. That's why I like hotels -- the clean crisp sheets. Tuck yourself in and enjoy your hard work.

[Erin524]

I can barely move now.

Freaks me out that doing something like making a bed can tire me out like that. I mean, I can walk all over town all day as long as I get breaks and can rest a bit.

But, making my bed (straightening out the foam mattress pad, doing the fitted sheet, flat sheet, two comforters and four pillows) can make me feel like I just ran a marathon.

Maybe it's because I have to lift the mattress and flip sheets to straighten them out, and all the bending over to tuck the sheets under the matress. When I'm walking, I dont have to do all that.

But, it's just so pathetic that I cant even make a bed without collapsing from exhaustion.

Of course, it is 1am here now, so I probably should have started the bed making this afternoon, or this morning. I'm sure the sore shoulder and neck that have been bugging me for a few weeks might have had something to do with it too.

I'm so tired now. I think I'll lay down and watch something on my Tivo.

[lady_express_44]

Perhaps you just figured out how to deal with your insomnia, Erin . . . just wear yourself out by putting clean sheets on every night?

Seriously though, if I was not currently in an attack, I'd be questioning why I was having these kind of problems, especially with stamina. I have days where things are 10 times more difficult (fingers don't work, dropping things, can't think clearly, etc.), but pretty much the only time I really struggle physically is when I am in an attack.

It is very important to have a daily exercise routine, to maintain strength and energy with this disease. Your weight isn't nearly as relevant as staying in shape . . . which I have especially noticed to be true with "The Biggest Loser" contestants ...

Some of those people start out at 400 lbs, but by the time they reach 250 lbs, they can JOG up mountains. They are competing against people who start out at 250 lbs, but don't actually do much better (then the now 250 lb'ers), even though they are down 170 lbs. It is about staying in shape, no matter what your weight.

Everything is harder with this disease (clumsiness, thinking obstacles, etc.), so that requires that we keep fit physically. I don't try to tackle my biggest physical challenges at night time . . . but push myself in this way during the mornings when I have the most energy.

Even if you start out slow, with just a stretching routine, I think it would serve you well to plan to stay as physically fit as possible (even if your brain isn't as "fit" as it once was). You are too young to be having this kind of struggle already.

Cherie

[AfterMyNap]

I hear you, Erin, such a simple, mundane thing is not supposed to be an Olympic event. A few years ago, I actually ditched the queen for a twin because I just can't run the laps anymore.

I agree with the others that doing it in parts might be the best approach until you're feeling a little better. Hang in there, girl.

[Taffy]

Say....do we really need sheets anyways? How about sleeping in a sleeping bag? Remember when we kids? We would of thought that that would of been fun!

[Kitty]

Originally Posted by Taffy

Say....do we really need sheets anyways? How about sleeping in a sleeping bag? Remember when we kids? We would of thought that that would of been fun!

Or...

We could just pretend we're camping.....sleep in whatever we're planning to wear the following day. That way - no bed to make and when you get up you're already dressed!

Now, if I could just figure out how to brush my teeth in bed without making too much of a mess I'd have it all figured out!!

[Erin524]

Originally Posted by lady_express_44

Perhaps you just figured out how to deal with your insomnia, Erin . . . just wear yourself out by putting clean sheets on every night?

Seriously though, if I was not currently in an attack, I'd be questioning why I was having these kind of problems, especially with stamina. I have days where things are 10 times more difficult (fingers don't work, dropping things, can't think clearly, etc.), but pretty much the only time I really struggle physically is when I am in an attack.

It is very important to have a daily exercise routine, to maintain strength and energy with this disease. Your weight isn't nearly as relevant as staying in shape . . . which I have especially noticed to be true with "The Biggest Loser" contestants ...

Some of those people start out at 400 lbs, but by the time they reach 250 lbs, they can JOG up mountains. They are competing against people who start out at 250 lbs, but don't actually do much better (then the now 250 lb'ers), even though they are down 170 lbs. It is about staying in shape, no matter what your weight.

Everything is harder with this disease (clumsiness, thinking obstacles, etc.), so that requires that we keep fit physically. I don't try to tackle my biggest physical challenges at night time . . . but push myself in this way during the mornings when I have the most energy.

Even if you start out slow, with just a stretching routine, I think it would serve you well to plan to stay as physically fit as possible (even if your brain isn't as "fit" as it once was). You are too young to be having this kind of struggle already.

Cherie

I think you're right. I need to exercise more.

since walking isnt a huge problem for me, maybe I'll go kidnap my aunt and make her go for a walk with me. We used to walk all the time with our dogs. (my bouvier, her pug...we got lots of strange looks)

My dog died 2yrs ago in March...her pug died about a month ago, on the same date that my dog died. (weird!)

This summer when it gets so hot out that I cant go outside for long, I'll probably end up going to the mall and walking there. (I'll have to take a bullet proof vest and a battle helmet, it's the same mall that got shot up in December)

[lady_express_44]

I can't walk far at all either, Erin. With your back problems, on top of everything else, I can imagine that many types of exercise might be quite difficult to do too.

I haven't been able to do much in the last several months, and have packed on 10 lbs. Between the extra weight, and not felling good, I am struggling much more to do anything then I did before I had this attack.

Last time this happened, I started with some back exercises my doc gave me. Once I got good at those (took about a month), I moved onto a lot more stretching and toning . . . but I have never been able to do any amount of walking, running, aerobics, or anything that takes a great deal of balance.

What I could do though, was enough to keep my muscles strong, spasticity limber (somewhat), and give me a little endurance for the easier jobs around home. I plan to start back up in the middle of May, when I expect this relapse has run it's course as much as it plans to.

Let's do it together?

Cherie