Hi
I am really struggling to get my family and colleagues to understand what I mean by Fatigue. They all just think I’m a bit tired, and an early night will cure it. I have even been told, ‘its this time of year, everyone feels the same’. I don’t know how to get across to them how it really is. I am really frustrated and it doesn’t help when I am beyond exhausted. Any advise? Thanks
I recognise this. The MS Society have a good publication which you can read on-line or order a copy in the post. This helps explain the things that people without MS don’t really understand about MS related fatigue. It might help you explain or you could suggest that people read it.
https://www.mssociety.org.uk/sites/default/files/Fatigue%20August%202016.pdf
Best wishes
As a non MS sufferer, I tend to think of it as being like when I have the flu, anything is just too much effort. This works for me and it’s what I have to imagine when my wife is fatigued.
On the same subject, my wife used to see a physio privately a couple of years back. This woman retired because she had breast cancer. My wife wanted to discuss some alternative physio measures with her and so she paid us a visit recently.
She said that she had never fully comprehended the MS fatigue thing until she had chemotherapy for her breast cancer which left her in much the same state as she imagined MS fatigue must feel like from some of her other patient descriptions…
Hi
The MS Trust have a fact sheet on this very issue: Describing fatigue to others | MS Trust
Fatigue is very hard for other people to understand unless they have ever experienced it. So, it’s not that your family and friends are just not listening, it’s that it’s difficult to put into words.
The way Ayjay has explained it is an excellent example.
Sue
Sharper028,
the links above are useful. As a child of the 60s I was very cynical and unsympathetic about fatigue as described by sufferers of ME (commonly described at the time as yuppy flu) I now have a much more informed understanding of fatigue. I tend to describe it as trying to wade through waist deep treacle whilst carrying buckets of cement whilst breathing through a wet scarf. I have been known to leave my forehead on the table because I do not have the energy to hold myself up. As it is difficult to see how I feel, I have agreed a specific vocabulary with my family so that when I use the term “banjaxed” everyone knows that I am not just tired or very tired, but just this side of “poleaxed”
good luck Mick
read the spoon theory written by christine miserandino.
google “spoon theory and fatigue”
carole x
now go and have a nap
Thanks guys for your comments, it has really helped
The lack of understanding re ‘fatigue’ is our own fault for using such a confusing and meaningless?? term for what is a very serious issue.
Tell people that you suffer from ‘fatigue’ and they immediately empathise because they too have suffered form ‘fatigue’ and they of course think their ‘fatigue’ is the same as ours – it ain’t!
Instead of using the term ‘fatigue’ I just say I feel really unwell or I feel ill. I find people to be much more understanding than when I talked about ‘fatigue’
my family didnt understand that for me just being a passenger in the car and visiting them would wipe me out. By the time i got to my destination, i was exhausted beyond belief, ached all over, felt like my leg was encased in concrete, and would have awful backache. I would find it really hard and never enjoyed a visit as even talking was an effort and a lot of my words would come out scrambled like my brain.
I agree about the word Fatigue its not the right word. If i say i am fatigued my sister will say oh yeh i get that etc. Its beyond fatigue. Fatigue in MS can cause pain which makes just feeling tired even more a challenge. I dont feel tired, that i need to sleep, I just feel polaxed, my body has simply run out of battery until i can charge it up some more. Its like trying to drive a mobility scooter with only a tiny bit of battery, instead of a tortoise speed we end up with a snail lol.
I hate it, everyday i live with it, and by 5pm i am mostly in bed because my battery simply cant be recharged until the next day.
It’s not “fatigue” it’s enervation - definition:
1 . To weaken or destroy the strength or vitality of
Seems to sum it up to me
Jo x
Except not many people will understand that term and you use more energy having to explain it !
I can just imagine telling someone I’ve got a bad case of ‘enervation’, them asking what that means and me answering, ‘fatigue’!
Sue
asking a fellow ms-er how he felt he used a word beginning with ‘f’ and it wasn’t ‘fatigue’ – I knew exactly how he felt!
wonder how my neuro would react if I used such basic terminology?
Your neuro would definitely understand you.
You’re missing the point - tell people you’re fatigued, and they’ll just dismiss you, saying something like “well, we all get a bit tired” - tell people you’re enervated, and they won’t know what you mean, and may just realise that you’re not just a bit tired.
My neurologist would laugh and agree with me. Not sure I could use this term with my manager tho!
[quote=krakowian]
asking a fellow ms-er how he felt he used a word beginning with ‘f’ and it wasn’t ‘fatigue’ – I knew exactly how he felt!
wonder how my neuro would react if I used such basic terminology?
[/qu
ote]
I have and by his reaction he took me seriously he insisted I stay in hospital for a few days and had my diagnosis three days later .
perhaps we have become a little too polite in our terminology and as a result don’t really convey to the medics, employers, family etc. how we really are feeling.
as a techie my definition is SNAFU
to which the correct response is “bless you”
M
My specialist nurse askes my how my fatigue is and I tell her (ok to put this admin?) blxd. She laughs and knows exactly what I mean. I can’t think of any other word or phrase that explains how I feel on my days in fact, when the postman shouts ‘Hello Pam, how are you today?’ That’s what I usually reply! At which point he usually says something like ‘Not as tired as me’.