Ups and downs

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
I was under the impression that there wouldn't be ups and downs as I progress.

That being said, today is an up day regarding pain and a down day regarding general strength and mobility.

Thursday was a down day regarding both, but Friday & Saturday were more up. I had less pain and more dexterity and general strength (though it is vastly diminished compared to what my 'normal' strength was).

The fluctuations are really starting to get to me. :cry:
 
Does anyone else experience a change in strength, mobility, dexterity, pain, etc?
 
Yes indeed.

Just like you describe.

However as you progress I'm afraid the up days are not what they once were.
Example on an 'up' day 2 months my PALS could use a knife and fork, on a 'down' day the knife was really hard to use, but he would persist and manage.
Now on an 'up' day he can get the spoon (no forks or knives in use now and all food is puree) almost smoothly to his mouth, on the 'down' days I have to feed him.

And there are in between days, and it can be strength, mobility or pain in different mixtures.

We would love now to go back to some of the old 'down' days!

It does mean you never quite know one day to the next and planning can be hard. One day he feels like he could have a go at something but we have to go out or whatever, and next day with all the time he needs he just can't attempt it.

I have never known if the way he would go out and do too much on 'up' days say 4 months ago has only served to hasten his progression or it made no difference and I don't even worry about that now, it is what it is on any given day. (well telling ourselves that works much of the time!)
 
Yes, depends on how much sleep I get and how much activity the previous day
 
My husband had ups and downs. Some days he could help with transfers and some days he just couldn't. Later he couldn't at all. Yasmin.
 
Sleep is very important to Tim. If he has a bad night, guaranteed his day will be bad as well. But then it is the same for all of us.
I was up until 0300 doing research on his VPAP machine, and today I look like the living dead, and I have a headache. Even my hair looks tired.
 
Strangely good and bad days seem more random for my PALS.

Sure, if he has a really bad night it makes for a tired day, but often after a fairly good sleep he can still have a day where he is either weak, or has more pain or something.
 
Fatigue played a huge part in Glen's up and down days also.
 
Annie also experienced ups and downs, and like others have said, fatigue was a huge factor. She learned to limit how much she tried to do because she found that if she tried to do too much one day, she paid for it for several days.
 
If I have had a really busy day, I will be out of it the following day. That never fails. I too wonder if that is making the progression worse, but seriously, I am just not the kind of person that can just stay put. That's been something that's been so hard for me. I've always been one to "go, go, go" and now, I just can't most days.
 
Definitely if my PALS does too much one day (although now he is able to do very little, but in the early days a few months back), he would feel great at the end of it and say how much better he felt to have been out doing stuff. He would talk plans for the next day.

Next day he would be unable to much of anything, and it could take 2 - 3 days to recover.

Falling girl, I always felt the he was hastening progression. I did a thread a while ago about exercise and progression, but I should have titled it 'doing lots of stuff and progression' ;)

However, I could be wrong and he may have progressed just as fast anyway. It's such a hard thing with this disease because no 2 people progress at the same rate, so we can't know how fast he would have progressed if he/we had/hadn't done any one of a hundred things.

What I do know is that at the time it worried me, but looking at it now I agree with him that it felt so good to do that stuff! He has said to me - when I reach a day I am unable to do any particular thing, that means I will never be able to do that thing again.

So, I don't know what is right or true or best or any of those words. I do know that he did some things far longer than most would think he could.
 
Absolutely...as others have said, it depends on sleep, quality sleep not just hours...activity the day before, etc.

I just got back from a week long trip to Mississippi to see my Stepson get his pilot wings in the US Air Force. Even though I scheduled 3 days there and back, the trip wore me down. I wasn't able to do many things that I can still do, even my balance was affected.

For me rest and calm are the best remedies.

I do believe that over doing things speeds progression. Probably doesn't speed it up indefinitely but in the short term I would say it does.
 
Congrats on the wings!

I'm finding that I alternate with excessive pain and excessive weakness.

It's kicking my backside.
 
Hoping things are evening out for you....get a sleep aid if needed.
Rest is so important.
 
For me, I tell myself I have 10 units of energy each day. If I use more then that I pay for it the next day. Today we are getting the Christmas tree up. My better half does most of the work. And I do what I'm best at "Supervise"
 
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