Another Mistake...

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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Friday I took an hour drive (each way) to Ikea with my family. We were out the whole day. I got home and went right to bed everything hurt and I was exhausted. Since then I have very little strength and I can't get enough air to talk hardly at all. What I can say is weak and with a lot of pauses.

I am hoping that with more rest I will recover but am concerned that I WAY over did it and caused a big decline in my breathing. It has always been tough for me to know/see my limitations it is even more difficult now as my mind thinks I can, but my body, well you know...
 
Oh Pete, so sorry this disease just never stops taking does it!

Make sure you do rest up now and give yourself the best chance at recovering as best you can.

The problem is we just never know where that limit line is drawn until we step over it when things are constantly changing.

Many hugs my friend
 
Pete, I so very much understand.

I have great difficulty gauging how much I do and knowing where my limit should be.

I just push and push to achieve whatever goal I have in mind. And, like you, I pay the price. Sometimes for days and sometimes longer.

I have found that when I do too much, I do recover. I think that is because I do it in a wheelchair, so am not really taxing my muscles.

Wishing you the best New Year possible.

Steve
 
I'm so sorry, Pete. I know how much family time means to you. I push myself to the max, too. I'm one of the ones who has a lot of pain with this disease. Probably most of it came from falls, car accidents (prior to ALS) and sports. Today I decided to clean all three bathrooms on my hands and knees. I had a hard time getting back up and now my lower back and right knee are throbbing.

Every time I overdo it I pay for days.
 
My husband has bulbar onset and still walks, but recently he went to a church event with family about an hour away from our house. He was gone for about 5 hours. By the time he got home he was so exhausted that he couldn’t talk at all. Didn’t even try. He slept off and on for a couple of days and then seemed to get his energy back.
 
Thank all of you for your support. Steve I am also in my power chair all the time except for transfers. Part of the issue is that my trunk/core is so weak that every bump, turn, or any slightest change jostles me like I have been in a car wreck. It is just part of my regression (progression implies moving forward).
 
I feel ya brother I do this often!
We don’t want to just lay down and stop nor should we!

Rest up friend you’ll bounce back and go at it again, it’s what we do till the finish line draws us in.

Happy new year to ya Pete and everyone on the forum.

Love ya
Chally
 
I am with you on every bump taking a pounding. They really should engineer shock absorbers in the chairs.
 
Pete, I can only imagine what it is like to have the jostling of the wheelchair cause pain.

For me, it causes fatigue, but not pain. I have found that using lateral thoracic supports dramatically reduces the fatigue.

I like the Permobil lateral thoracic supports for the VS seat in my Permobil C500s VS wheelchair the best.

I find the Stealth lateral thoracic supports for the Corpus 3G seat in my Permobil C500 Corpus 3g are adequate, but not as good as the ones in my VS seat.

The standard thoracic supports in my Permobil C350 Corpus 3G wheelchair are close to useless for me.

If you don't have add-on thoracic supports (not the tear-drop shaped ones that come standard with Permobil wheelchairs), I highly encourage you to investigate them. They have made a great, positive difference in my life.

All my Permobil wheelchairs have shock absorbers. From the factory, they seem to come adjusted for very heavy folks. Adjusting them properly for my weight (covered in the appropriate Permobil base service manual) has really made a difference in comfort for me.

Steve
 
Pete I am so sorry to read that you are really exhausted after your outing. Slow it down lad, keep doing what you enjoy, but knock it back by half is my two cents. Hubby has CIDP and couldn't have coped with that marathon day that you had. Keep enjoying activities but really think about how long you can participate without exhausting yourself. I hope you get your mojo back soon Pete.

Laurel
 
Hi Pete. I hope today finds you feeling a bit better. DH, when he could go out, always took several days to recover. Happy New Year!

Hugs,

Sue
 
I am the same or worse today Hospice is concerned. No noise in lungs just in their words "extremely shallow" breathing.
 
Pete, I'm sorry to hear that.

With regards to your lungs, my mother had such congested lungs from pneumonia that there were none of the usual crackly sounds- which confounded her doctor till she got a chest x-ray and he saw why. I am hoping this is your case too and you will improve once treated.
 
Dang it Pete - I have been thinking of you and of course was hoping you would report you are just a tiny bit better. Hugs my friend, resting is all you can do now, maybe watch some favourite movies with your family, ones you know well enough that if you nap at times it won't matter xxx
 
Pete, I am very sorry to hear this. I continue praying for you and hope that you will be feeling better soon.

Steve
 
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