Extreme and sudden fatigue

[LynneMcV]

I know it is not unknown for people with this horrible disease to grow extremely tired - but I am just wondering if anybody has experienced anything similar to this.

My husband generally does well sleep-wise - generally he will be until almost 11pm and does not tend to nap during the day.

There have been a couple of occasions recently though when I have thought he was about to collapse through exhaustion - it's like he has momentarily fallen asleep on his feet, and it is the sensation of falling over that has made him wake up - to the point where he suddenly sways and staggers in a bid to stay upright.

On both occasions so far, this has followed long, tiring days and a fair bit of travelling on the trains and underground - so I know the reason behind the exhaustion.

It is just a bit disconcerting how suddenly the tiredness sweeps over him - one minute he can be enjoying everything, the next second, it is like someone has flipped a switch and he almost drops down where he is.

 

[sistermillicent]

yes, I used to notice this with mum, she lost her stamina. I think it is rather similar in some way to how a urine infection affects someone with dementia, by knocking them sideways instead of just making them feel unwell. I felt quite guilty when I got mum and dad to come to my daughter's graduation and it made mum have a few funny turns. But in retrospect I am so glad we did it as it was one of the last trip away she had and one of our last family get togethers with her there and able to contribute/communicate near normally.
I would say keep doing the things you want to do as long as possible and deal with the tiredness when it occurs.

 

[LynneMcV]

Thanks sistermillicent,

Yes I totally agree with you, we are doing all the things we can, while we can.

One of the occasions, like your experience, was following our son's graduation day. My husband so desperately wanted to be a part of that day, and although it exhausted him, he (and we) are just so happy he was there with the family.

The second occasion was yesterday when I took my husband to a cricket match at the Oval. Going to the Oval has always been a big part in his life but he can no longer get himself there and back.

It was a lovely day with lots of his old cricket buddies around, but lasted many hours on top of all the travelling. We don't regret it though - next year he might not be able to get there even with my help - we are just grateful that we achieved what we did yesterday

It was a bit difficult getting home. On the tube people reacted to him as if he was drunk because he fell on me - and there was a similar reaction on the platform at Charing Cross as we waited for our train home!

 

[Jinx]

Lynne, I'm not sure if it's quite the same thing with my husband, but we had a few incidents when we were out walking and suddenly he would start to lean forward and stagger and I struggled to hold him up and had to find somewhere for him to sit. I now take a wheelchair whenever we go for a walk. I know it is probably not something you or your husband wants to do but it gives me peace of mind and he has got used to plopping in when he's had enough walking.


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[esmeralda]

Glad it was a lovely day for you both Lynne. Well done for making it happen, it can be tempting not to do things when you think about all the complications there could be.

Very sorry you encountered such adverse reactions on your way home. People can be very quick to make judgements.
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[Caz60]

Yes I can relate to this .My hubby suddenly feels really exhausted and on two occasions almost fallen over with tiredness.We were out walking and he suddenly went weak ,luckily we were near to a bench and he sat there while I went for the car .On other occasions he can't rise from his sitting position because of weak limbs .Usually he sleeps it off for a while.While writing this reply he has flooded the bathroom again ,that's another job ,I have to position the shower head otherwise it just runs down the opposite wall and onto the landing ,then through the ceiling.ooohh happy days .love to all xx

 

[LynneMcV]

Thanks Jinx - yes it sounds quite similar, I hadn't even begun to consider that this might eventually lead to a wheelchair in the long run, but it sounds so obvious now I think about it.

My husband is currently very mobile thank goodness, and fortunately we've just had the two episodes so far, but I'll certainly keep monitoring the situation to see if it becomes more regular.

If it does, than having a wheelchair around for when needed sounds a sensible consideration. My husband is 6ft 2ins and I'm 5ft 3ins and I don't really know how I would have copied had he not been able to get himself on and off the trains yesterday!

 

[LynneMcV]

Glad it was a lovely day for you both Lynne. Well done for making it happen, it can be tempting not to do things when you think about all the complications there could be.

Very sorry you encountered such adverse reactions on your way home. People can be very quick to make judgements.
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Thanks Esmeralda - I'm glad we made the effort too. I was dreading it - sitting through hours of cricket sounded like hell to me, but it actually turned out to be quite a good laugh because of the banter and social side that was part of it all

 

[LynneMcV]

Yes I can relate to this .My hubby suddenly feels really exhausted and on two occasions almost fallen over with tiredness.We were out walking and he suddenly went weak ,luckily we were near to a bench and he sat there while I went for the car .On other occasions he can't rise from his sitting position because of weak limbs .Usually he sleeps it off for a while.While writing this reply he has flooded the bathroom again ,that's another job ,I have to position the shower head otherwise it just runs down the opposite wall and onto the landing ,then through the ceiling.ooohh happy days .love to all xx

Thanks for confirming this is part and parcel of what you have experienced too. It's not something I would wish on anyone but it does bring with it some kind a reassurance knowing that this can be a typical part of the disease.

I fully understand the shower problem too, my husband forgets how to turn the shower off sometimes and his tactic is to turn the showerhead to the wall with the water still flowing - as far as he is concerned he has stopped it - unfortunately, if left undetected too long it can end up coming down the walls into the kitchen below!