Tiredness

[AlDowns]

Hello All.

As my ALS has progressed, I am becoming very weak and every activity, no matter how menial, winds me so the exhaustion level just increases. I am not talking about a walk around the block but just between rooms in the house. I spend my days sitting in my recliners and wheelchair. So far, once I get to one of my sitting locations I am probably there for the day. Not happy about that.
My wife, CALS, takes care of my requests when I ask for help.
If I ate when I feel hungry or feel like eating, then I might starve to death. (Yes, I have a feeding tube and use 3 boxes of the Kate farms daily.). This is keeping my weight stable.
I am on my bipap all night and a couple 2 hour sessions every day.
Visiting my local families and church attendance exhausts me.

Long preface, now for the question.
What leads a person to resort to their hospital bed and just stay there? Physically and mentally , that is where I was to go/stay. Emotionally, I tell myself that I do not want to do that yet.
While I can, I do plan to force myself to stay out of bed. But it is getting harder every day/week.

Your experience? Your feedback? Your opinions?

Thanks in advance.

 

[KimT]

For me it's always the pain and fatigue. I've had pain from early on and it's only getting worse as my muscles weaken. I have an adjustable bed and everything I need in my bedroom. It's just more comfortable and easier. This year I've progressed a lot and have other health issues to deal with as well. My bed is where I retreat.
I to know if I forget to get enough hydration it makes everything much worse. I can still get to the bathroom from my bed so transferring isn't an issue. Just forgetting to drink is my problem. I only drink water so it's not like I'm drawn to something that tastes good. It's just a chore. Sun on my eyes always lifts my mood and seems to give me a temporary boost of energy.

 

[Nikki J]

I am always tired and I fade badly as the day goes on. I do get into bed very early in the evening because otherwise I would struggle to do my nighttime routine. I am not sleepy and I read and surf the internet until sleep time . Supposedly awful sleep hygiene but it doesn’t seem to cause an issue

I also have to schedule any event with rest days before and after.

Al is it possible you need the bipap during the day more frequently?

 

[wmilo]

Al, what you said sounds to me like the path we're all on. All sorts of variations, but essentially the same.

I am past what you described (except I don't have a feeding tube), and I think a lot depends on your wheelchair. If you have a power wheelchair it should have been sized and adjusted to your stature and posture; if you don't have one yet, it will be.

It has to be comfortable for you. If it isn't, try to fix it. A helpful option is a ROHO cushion which replaces the original seat cushion. (I have a Permobil chair.) I've had no pressure sores since I began using it.

My tailbone gets sore sometimes, and to avoid that I try to make sure that my rear is as far back in the seat as possible. This allows more weight on my sit-bones and less on my tailbone. When sitting at my computer I tilt the seat-back forward enough that some of my weight is transferred to my thighs. This requires me to use a head support but to me that is better than a sore tailbone.

Once you are comfortable in your chair, you have lots of options. TV and the Interwebs have everything from the mindless to the intellectually engaging. If you like to read you likely can get free library cards to borrow books online.

It sounds like you value social contact. When you can no longer transfer from the chair it's a little harder. Your church may host services online. Make plans with friends and family. They will probably have to come to you. If you ordered takeout maybe they could pick it up and have a meal with you. Or watch the game together. Or host a Bible study. Or talk.

You mentioned staying in bed, and that is an option. You are facing a really hard mental, emotional, and spiritual challenge, which will require all you've got. It will not be once-and-done. My two cents is if you feel like staying in bed, ask for and accept help. You have too much to still bring to the world to waste it in bed.

I also recommend being observant about how much your CALS does for you and to be grateful for it. Express gratitude and encouragement often. She will have more on her plate over time and may need help herself.

Best

 

[Clearwater AL]

Being so weak now… doing much of anything makes me tired.
The only time I don’t feel weak and tired is when I sleep. No
pain but get aggravated trying to get comfortable. I cannot sit
on a hard chair… I’m sitting on bones. I bought a six 1” chair
pads, I have an expensive office chair at my desk, even with that
I have 3 of those pads in a small pillow case.

Same with my feet, I’m stepping on nothing but bones, I’ve
bought over size foot wear so I can put extra pads in them.
My left foot is just there now, same with my left hand. Had
to type this with right hand on Word first. Takes a while…
not doing much else.

I try hard not to give in and use the wheel chair unless it’s
having to get some place that’s too long of a distance for the
rollator. Unlike others I am still up on my feet… for now.
Got a stair lift now too.

I’m down from a healthy muscular 230lbs to 174lbs. I gave
up drilling new holes in my belts, now I use 24” stretchable bungy
cords. I got blue ones for jeans, black ones for dress pants.

I always remember what my Neuro told me in the beginning…
“Use it or lose it sooner but… don’t overdo it.” Well, over
doing it doesn’t seem to happen too often now.

I’ve probably rambled on enough… haven’t checked here
lately.

 

[Nikki J]

Al was the use it or lose it advice when they thought you had pls? It is more commonly given then though PALS are usually encouraged some exercise if tolerated/able there is more emphasis on conserving energy. Do consider using your chair a little more and see if your energy improves. I now have a rollator and find I am less tired doing the same thing when I use it much as I hate it

 

[Clearwater AL]

It's been a while... I believe it was after the second EMG. Like I said,
it's been a while... so many appointments. Not sure now.

"PALS are usually encouraged some exercise if tolerated/able there is
more emphasis on conserving energy." When I go to clinic now they
don't do PT. ?? Exercise takes energy. ??

Conserving energy kinda fits with... "don't over do it." It's different
approaches for different PALS I guess. Some say they have pain
when others say no pain... which no pain, just failure ALS has been
noted for so often

 

[AlDowns]

Regarding the exercise, I am now down to range of motion done by my wife. I do use the walker to get around the house.

I was not given the Use it or lose it, but instead don’t overdo.

Thanks for the responses.

 

[rao]

only my eyes are tired, paralyzed from neck down I spend 14hrs on the wheelchiar daily. Everyone asks if I am tired but is hard to be whenI just sit all day

 

[wmilo]

Al, when I could no longer type, I tried voice control (Dragon), but I've found it easier to use the Windows on-screen keyboard
(Settings>Ease of Access>Keyboard). It is slower but it has a predictive word option which reduces clicks.

I keep sized to about 2"x 4" in the upper right corner. There is a "Fade" key which makes it semi-transparent and "Mv Up/Down" keys which move it to the top or bottom if it is in the way.

 

[monique92760]

My physical therapist gave the analogy of a gas tank concerning energy and exercising. You only have a certain amount of energy in your tank. If you do a lot during the morning, be mindful to conserve enough to do basic activities(toileting and bed/chair transfers) later in the day.
I had a thought about muscle weakness to run by everyone. I'm 63. Before ALS, if I sat for 2 hours to watch a movie, I actually felt a bit stiff and it took me stretching a bit to not feel achy. Flash forward to me sitting for hours per day. I've realized, I have to do more range of motion and stretches when possible. It's easy to blame ALS for every single muscle weakness but perhaps it's just plain old not using the muscles for anything at all? Thoughts anyone? Also, for me, I've noticed the drink I buy from the Deanna protocol people helps a bit, too.

 

[Jimi]

I only have a little head movement left, so maybe I'm not the best to comment. In my experience as I stopped using it, it would quickly go down. The more I fought and used my muscles the better

 

[wmilo]

Monique - I'm thinking probably both.

 

[AlDowns]

I admire each and every one of you that has replied. You have been dealing with this longer than me.
my daily goal anymore is to be emotionally and spiritually strong. That is the best I can muster.

Praying for the end.

(he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead!)