Living with extreme fatigue

[stillstANNding]

From the BBC:

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It includes MS.

ANN

[agate]

Interesting that Ritalin is mentioned as possibly effective against MS fatigue. We were just talking about it:

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[Howie]

My problem seems to be keeping a regular sleep schedule. I couldn't sleep at all a few nights ago, then I napped all day today. I'm now drinking coffee, about the third mug since about 8pm, and feel like I could just lie down and go to sleep in 2 minutes.

One nice thing about being retired, I can sleep anytime I want. I have no schedule for anything except to keep a doctor's appointment, and on those nights before an appointment, I don't sleep.

So sleep well tonight....if you can!

[SalpalSally]

Does it include you Ann? Huggggggs!

[Jen's Solitude]

I really identified with having to just shut down and lay quietly. I rarely fall asleep during the day, but I always have to "rest" when my fatigue gets to a certain point. I need complete quiet including no movement beyond what is absolutely necessary.

That has changed with the time-released Ritalin. We feel like it is just what I needed. Now I feel a "normal" tired and have actually been able to engage in activities I abandoned years ago. When I tire out at the end of the day it is not that mind-numbing exhaustion where I stop talking and thinking. It sure is a welcomed change!

[stillstANNding]

The thing I thought was interesting: it was the first time I've seen a description of our grocery store phenomenon. Also, that this happens to a range of people w neuro degenerative disorders and injuries.

We are not alone. (happy face)
ANN

Editet to add: Hi DAR, I'm glad it is working for you!
ANN

[agate]

Yes, the grocery store:

Even a simple trip to the supermarket can be overwhelming for people suffering from cognitive fatigue.

I think it's partly because it often isn't such a simple trip to the supermarket any more. You don't just drop in and pick up your dozen eggs or whatever. You have to find them--unless you know the store, and knowing the store is a huge help. You'll be going down aisles where constant surprises are coming at you.

It could be a child throwing a tantrum or something sailing off a shelf and smashing to the ground. Or it could be one of those specially designed attention-getters at the end of every aisle--special displays cunningly arranged to catch your eye--and often to get in your way.

You also need to navigate around the people who are absorbed in texting on their phones, but that's just par for the course.

AND you'll have messages coming at you through the PA system: "ATTENTION SHOPPERS! A special price on Cheerios!"

Sensory overload, maybe.

And if you're usually at home in fairly quiet place, a store--any store--is a whole different world, with a lot to take in. The sights, sounds, and odors are going to hit you and seem overwhelming.

With all of that happening, you have to remember why you came there, make sure you know where the public bathroom is, and keep track of that all-important information you'll have to have at checkout.

I don't know how many times I've been in a store with my wheelchair and handbag and shopping list and suddenly panicked because I couldn't find my all-important card case.

It always turned up, after considerable searching and sometimes involving other customers or employees, but it's the sort of dumb thing that wouldn't happen to me without too much going on.

I do best in slow, quiet surroundings. I think that's true of many people with other neurological problems.

Maybe it's the way to get along with neurological impairments.

Dar, shutting down has helped me many times. If I can't lie down, I might turn on some music I like, shut my eyes and just sit and get lost in it for a while. Even just a few minutes like that can do a lot to restore me to a point where I'm more alert.

That's really good news about the time-released Ritalin!

[Virginia]

This is so interesting and I can so relate to it, as I am sure many on here can. I am even getting to the point that I don't want the television on much. Just any noise seems to bother me. A few minutes of quiet does not seem to help. I have to have days sometimes and lately it has been more of a withdrawing for a week or two.

The time released Ritalin sounds interesting, but I cannot take it because I have extreme insomnia. I sometimes think this is part of my problem. However, Dar, I am sure glad it is working for you.

Ann, thanks for the article. Many of us on here could, I am sure, see ourselves on almost every line when they are referring to the mind altering fatigue.

[Sunshine]

I don't think I realized how bad it was before starting IVIG. Today I surfed for two hours, came home, cleaned up. That would usually do me in until the next day. But after resting 3 hours, I pulled 60 books down from upstairs, loaded them up into the car in the high heat and drove them to Goodwill and helped unload them in the heat.

No way I could've done that before IVIG. Just going upstairs would've been a huge challenge.

[agate]

That is fantastic, BBS!

If I'd tried loading 60 books and taking them somewhere in the heat, I might have been able to get away with it, but then again I might have given out in the middle of it. I just never know how much I can get away with.

[stillstANNding]

Ahh, there's the rub: the not knowing how much energy or time we have before we just can not go on.

ANN

[Sunshine]

That is fantastic, BBS!

If I'd tried loading 60 books and taking them somewhere in the heat, I might have been able to get away with it, but then again I might have given out in the middle of it. I just never know how much I can get away with.

Well I spoke too soon. Was surfing this morning and after about 1.5 hours suddenly while popping up on a wave, my shins, toes and feet became very spastic. Friends sat with me until it eased and helped me limp to the car. Pretty sure I was not yet recovered from yesterday. Won't do that kind of work again!

[Lazarus]

Interesting that Ritalin is mentioned as possibly effective against MS fatigue. We were just talking about it:

Only registered and activated users can see links., Click Here To Register...

I used Ritalin for years. A neuro said when you have brain fatigue, Ritalin helps. True. I used it a lot when I was teaching. It helps you think.

When my body is tired and I have trouble staying awake I use provigil.