How to keep going...

[Schmutz]

OK My turn to simply whine.

I'm so tired of being tired. I'm worthless. I went to bed after a totally useless day determined to wake up and change my ways.


I succeeded in walking the high school track but that knocked me out. I need to "shower" and get ready to go to the movies but I'm sitting on my couch complaining to you and I don't want to continue to feel like this.

hOW do you keep this up?

Anne

 

[MaxEidswick]

>hOW do you keep this up?



I am having one of those days, too (actually 3 of them :-(). two days ago I was simply trying to help Sandy by hanging the wind chimes in back. Almost had it when arm simply gave out, dropped the chimes on a safety glass cooking table, smashed into a gazillion pieces, and couldn'tt even help to clean up the mess. And I really liked that table.

today up 1/2 the night breathing probs from resiidual pneumonia, did nebulizer, back to bed for three hrs. Oh well, maybe the Packers will win. And UM won yesterday, so not all bad ...

 

[LaurieCALS]

Anne, no worries. You do whatever the heck you feel like doing....even if it's nothing at all. We all have a bunch of stuff we should or could be doing, and if we don't do it, well, the sun still shines. It's okay to take a day off. I call 'em "snow days."

 

[Schmidhogan]

ALS really sucks. It's so hard being unproductive. I used to measure my days by what I accomplished. Being retired that meant exercise, improvements and repairs around the house, volunteer duties, or progress on furniture in my wood shop. Now I can do none of these things. It's hard to think of just getting up and dressing as productivity. Alex

 

[bigmark1954]

You guys must have the same crap I have....... I am so down on myself because my fatigue doesn't allow me to do a lot of things that are important to my mental well being.
A normal day for me is: up at 9am, read the paper and play on the PC, sh!t-shower and shave about noon, and then spend the rest of the day thinking about all that I need to get done. I try to do at least a few things on my list, like errands, exercise, and playing with the dog.
I just can't seem to get to things that I need to do, like cleaning and organizing my man cave, advanced directives, applying for SSDI etc etc. etc.
I have always been a well organized and productive person, but I seem to be stuck in a rut called ALS.

 

[dalvin]

I've learned to conserve energy in everything I do. Use the pwc instead of trying to drag myself around, and I do mean drag, my right leg will not move so I would have to take a small step with left then twist my body to drag the right forward. Just not worth the effort. Accept help with almost everything, including taking a shower. You have to learn to pick and chose so you have the energy for the fun things

 

[azgirl]

>I have always been a well organized productive person, but I seem to be stuck in a rut called ALS.

Well, it sounds like we're all in the same sad boat. The hardest part for me is watching my family doing all the work. But here I sit, dog in my lap, home from breakfast with my daughter and grandson and an hour in the pool, so it's not all bad. Plus, I have all of you who understand just how this feels.

 

[Dusty7]

Wow, I would never think of walking around a track. My whole life revolves around conserving energy. I can still walk (with a cane) but I limit it as much as possible. I will circle and circle to get the best handicap parking space. I use the power cart at the grocery store. I plan my day to allow for "major events"--like going to the grocery store, driving my wife on her errands, going to the doctor, going to the pool, going out to dinner, etc. and I never have more than 2 of those events in a day. If I do more than 2, I have to "repay" it the next day as I will be exhausted.

I wake about 930, then work on my computer til about noon, then eat breakfast. 1-3pm is for the major events. 3pm is nap time, 1 1/2-2 hours, and I can't avoid the nap or i just fall asleep wherever I am.

My wife won't let me help with anything (hardly). she knows I have very little energy and she wants me to save it to take her out to eat or to the pool. I can drive her to the post office or the library but she'll go in and pick up the books I ordered. Her babying me annoyed me for a while, but with energy supplies dwindling, I would rather spend my "quality" time with her. And when she goes to the gym, she's on her own.

 

[Clearwater AL]

Ok, now from someone who has PLS. Schmutz, do you have PLS or ALS?

If you your diagnosis is PLS let me tell you what a neuro told me concerning PLS but with a different end twist...

"Use it - or lose it.... sooner." Do what you can do as much as you can do... often.

If you have PLS you are not facing what those with ALS will face in each tomorrow. Don't stop... improvise, adapt and accept. In many cases PLS will plateau, pray for that.

Take pride in what you can do, like I wrote in a previous thread... a five years ago I completely rebuilt our front deck. After it was done the thought never crossed my mind to take a picture of it. Today, if I fix 'anything' around here now... for some strange reason I want to take a picture of it!

 

[Schmutz]

Thanks everyone. And yes - I do have PLS so that's why I walk the track- I can't walk on hills so a flat track works for me. I go to physical therapy twice a week but when I get home from anything I have to just sit for awhile and do nothing.
It's disgusting but the best I can do.

I must go help my husband fix dinner. That's one of the things I promised my self I would
be better about last night.

I have done better today. Got up, walked the track, "showered", went to a lousy movie, and now I'll have dinner. I'll try to sleep better tonight.

I have to be responsible about some things. '

I'm trying to have a better atttitude!

Anne

 

[Janie H]

Anne,
I try to think about it as the vacation I never had, I was working 12 hours a day at a stressful job when I was diagnosed. Now I just have to worry about what to eat for lunch, what's on TV. Not being able to speak hurts but it could always be worse.

Janie H

 

[Mike in Maine]

Just take it slow, I try to keep a steady strain on the line and accomplish what I can, and catch the next stuff in the following days. I’m lucky in that my family understands when I say I’m done that’s it, it is either bedtime or nap time. Means they have to do a lot extra, but they understanding the reason why and I love them all the more for it. Do something, take a short break, listen to what your body tells you and go from there. If I don’t listen to what my body is saying and shutdown when needed, I’m usually in for a big crash and those suck because they can last for days. I think going slow maybe the answer to the always pulling and tearing the muscle, again slow and deliberate, think about my actions, my movements. No more rushing to see how much I can get done in a day, do what I need to get done today. It is a huge mind set change, at least it has been for me. A sea change.