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Tips on describing MS fatigue?

Hi everyone, Just wondering if anyone has any tips on how to explain MS fatigue to those close to us? I feel that sometimes when I am just too tired to do what friends, family, my partner expect or want me to do, simply saying ‘I am really tired’ isn’t doing the trick… They simply expect me to ‘dig deep’ like I used to do and push through the fatigue. Anyone have an approach that works for them? Have tried the basic ‘ms fatigue is different’ thing, but they don’t get it. Do I just have to start putting up with folks thinking I am just lazy or using ms MS as an excuse? Thanks for any advice.

Hi :slight_smile: I usually use “I feel like I have elephant legs on a human body” this lets my boyfriend know that it takes to much energy to move my legs I only had to explain it once and now I can just say that and he understands. Hope this helps I actually made a thread called elephant legs on a human body where I asked people what analogies they use you could maybe have a look and see of there’s any better way of describing it for you :slight_smile: Tasha x

I always joke that my mind is willing but my body just not able !! But in all seriousness, I describe it as like having “proper” flu. Not a piffling cold but real flu. If there was a £50 note at the end of the bed, I couldn’t move to pick it up. It’s like having an epidural from the neck down or being submerged in soaking wet sand. Catherine Xx

I have 2 teenage girls. Thus v v demanding. I can’t do an eighth of things I used to do. I explain it simply to them as if you walk a mile it is like me walking 10. For every hour you shop it is the equivalent of 10 hours for me. It is not you believe me it is the most frustrating disease EVER. you might look fine but you are far from fine. Ther is a fine balance between overdoing it and not getting on with your life. It is not in my nature to be selfish but I am having to learn that my health comes far ahead of others needs. I don’t like it but it is fact. I have the saying “if I can keep healthy for the next 10 years they will have found a cure by then”. It is not an excuse. Tell them that you are trying to prevent another relapse and they shoul want the same thing. If you overdo it you will be so cross with yourself for pushing into another relapse. I k ow I have done the exact same thing and ended up bed bound for nearly 6 months. The more pressure your partner family or friends put on you to dig deep the more likely you are to relapse. Stress is a massive factor. Are you taking anything ie Dmd. Pain relief. I have struggled in the heat and been shocked how tired I am. So much so I have felt I have been back to gp upped my amotrip to stop my legs from aching and meaning I don’t sleep well I have found if I don’t get the right sleep and enough it can bring on a mini relapse or my symptoms are much more pronounced. Another way of telling people is. Imagine you have been out on the beers Thursday, Friday, Saturday and Sunday and you have not slept much perhaps 4 hours a night. How do you feel in Monday. That’s how I feel EVERYDAY. and not had the fun… You can’t understand how others feel as they have no concept of how you feel. Look at it in other lights, being a parent, loosing a loved one, you can’t appreciate it until you have experienced it. Explain you don’t want sympathy, just understanding and patience. I hope this helps. I am here to chat if you want, don’t get too caught up on how others are, just look after yourself. Big hugs xxxx

Hi there,hope you haven’t melted.How about their worst hangover and they’ve got to clean the house from top to bottom

Wb x

I always use swimming / wading through treacle to describe it. X

there is a “spoons” story but i cant remember it all.

google “spoons and fatigue”

good luck

carole x

google “spoon theory”

‘The Spoon Theory’ is a brilliant tool to help other people understand a bit more about the lives of those of us with a chronic illness. It is written by Christine Miserandino,who suffers from Lupus, and it can be found at:

www.butyoudon’t look sick.com

Hope that helps,

Hazel

Thanks everyone! These are all great and lots of options that will work for different folks in my life. Really appreciate it Jx

the spooon theory worked for trying to explain to hubby

I have also used the spoon theory which people do relate to. My other tool has been to say “I have just been malleted” rather than say “I am tired”. Sometimes I would just go to bed and leave everyone to get on with it. They soon realise that it is more serious. It also helps to get the MS leaflet for everyone to read. I hope that you pick up soon but try hard to stay relaxed and if something doesn’t get done, there is always another day.

I have read two descriptions of what MS fatigue is like

The worst hangover you’ve ever had.

The worst jetlag you’ve ever had.

I don’t know if either are good descriptions because I’m one of those people who don’t get hangovers and I’ve never travelled far enough away to get jetlag!

As moirawest said, definitely don’t say ‘I’m tired’. You’re not. You are abso-bleedin-lutely knackerd. Unfortunately when fatigue hits we are so knackered we can’t find any words much less words to describe how we’re feeling.

I say ‘I am cabbage’ because my brain is so spaced out. Not the best thing to say but it’s as good as it gets for me sometimes.

Have you seen the booklet on fatigue on the MSTrust website? That may help you explain MS fatigue to people who are lucky enough not to have MS.

I gave everyone who knows me a copy of the spoons theory and it really helped some understand it. When i was still working some colleagues used to ask at times “You need a few more spoons today?” Lol Janey xxx