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Somewhat deflated

My youngest daughter has been home for a few days. Yesterday she asked her dad and me if we were coming down to Edinburgh to see her in March. I said no because of the effort It takes to get there and I’m just not up to it just now. She said to me mum you really should make more effort there are lots of people out there whose level of disability is a lot worse.

Now I still work 3 days a week but don’t have a lot of energy on my days off for other things but I try my best and I hate to think other people don’t think I’m trying hard enough.

Her comment has made me think I am not pushing myself hard enough and I am getting lazy.

My daughter is at uni but she has worked in a Sue Ryder centre and has cared for people with MS so she does know a bit about the condition.

Its been annoying me since she said it.

Mags xx

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MS disability is not just about the “visible” effects - the slowness of movement, the stiffness etc. For me, the greatest factor of all is the unpredictable, debilitating fatigue that bears little relation to anything. I can be energetic for an hour, then crash. Then pick up again - or not.

Fatigue is very difficult to explain to anyone who does not have MS themselves. Even GPs and - to a lesser extent - neurologists don’t always fully understand its impact. Fatigue in MS is poorly understood. One source of it is that damaged nerves need an awful lot more energy to work. There are also thought to be problems with the mitochondria in MS - organelles in cells which are involved in energy metabolism. And it may be that damage to certain areas of the brain causes fatigue.

People can suffer fatigue with MS even without “physical disabilities”.

So perhaps get an information booklet on MS fatigue from the MS Soc. or the MS Trust and give this to your daughter. And put your foot down. I have had to learn to say "no" due to MS too.

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Hi Mags, that is so annoying!!! I hate that ‘make more effort’ business. Like the chiropodist who came to me at home and said next time I have to go to the clinic as it would ‘do me good to get out’. What the F does she know about how I feel??

I think it’s absolute amazing that you work 3 days a week!!!

I sometimes tell people to remember when they last had flu…and then tell them that’s how I feel 24/7. Which is true…it is how I feel.

I think some info on MS fatigue would be handy for your daughter…and as Lapwing says, put your foot down. You are NOT lazy. You are living with a chronic illness!

Take care and don’t let it get you down.

Pat xx

Hello Mags.

It is so hard to get people to understand how we are affected by fatigue. One day we may be quite active and involved and the next we are listless. Even talking is an effort. It’s hard for my wife as she, like those that should know better, as Lapwing mentions, just don’t understand. As Pat says, some specific information about fatigue might be helpful. My oft used phrase is “when I can I will”. What do the other members of your family think? Can they be a means of support? (Just an idea.)

Working with our condition, actually giving you time and effort can sometimes leave us devastated.

Best wishes, Steve. x

The problem with MS fatigue Mags, is unless you have this crappy condition, no one can really understand what it’s like. Even if you try to explain it, you get the same old reply …yes I know, I am tired as well!!

Try not to let that comment get you down, she most probably didn’t mean anything by it, but you are definitely not lazy.

This forum really helps, cos we all really understand…keep your chin up.

Pam x

If you put “fatigue” into the search box on this site, you’ll get to the free MS Trust publication called “Living with Fatigue”: https://support.mstrust.org.uk/shop

And here’s one from the MS Soc.: https://www.mssociety.org.uk/ms-resources/fatigue-booklet

Best wishes from Lapwing, who is about to go for a nap!

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Hi Pat, thats what i told my daughter only other week she had the flu,and i said you know how ill you feel just now, try feeling like it ALL the time, cos thats what i feel like most days,dont think she believed me though.

J x

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really feel for you Mags, they just dont get it,do they ?

i have a friend who had a mum with MS she was her main carer,and even SHE doesnt understand,

i have been bad since 2010,and not up to doing much at all most days, and she said i should try and get out more !!! i told her my walking is very poor now,and she said i must try to walk more grrrrrrrrr

J x

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Lol they don’t get it do they. I am in bed writing this coz it was to much effort to go back downstairs after a bathroom trip. I was exhausted having a poo. Still I have been out twice in two days.

XXX Don

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Mags I have an 18 year old daughter who also has big feet that generally end up in her mouth too. Sometimes they say things and think later. She won’t understand fatigue as she can probably only relate it to tiredness as they forget how pathetic they were when they were last ill. We know the difference but as the others have said, very few others understand it.

What she said was horrid, and I’m sure she’d be mortified if she knew how much she’s hurt you. I can sympathise as I’ve had similar remarks thrown at me and I’ve cried myself to sleep many nights over them, but when I’ve sat Jen down and explained she’s apologised but still done it again without realising. I write it up as frustration on their parts.

I am only 46 but can’t keep up like other parents or my friends. Only my dad now understands and I’m trying to get mum to grasp the concept as she gets him down too at times. I think you’re doing very well to still be working. I couldn’t cope with that, never mind traveling during my days off.

It is very hurtful and my saying " I’m sure she never meant it" probably won’t convince you. Another thing for her to read is the spoon theory.

I used this to explain it to a friend and it helped. It’s not easy but you can hold your chin high, you are not lazy.

Cath xx

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Sorry, here’s the link

Cath x

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There are so very few people who understand how severe fatigue can be!

On Sunday, the district nurse coordinator called me to arrange a blood test…I’ve been struggling with an over active thyroid which has thrown my ms into total chaos! To add to the complications 10 days ago I was floored by a kidney infection which did not respond to antibiotics…so, one way or another on Sunday I was pretty ill! Husband out walking the dogs, phone rings, I couldn’t get to it so let the answer phone deal with it… I’m sure that’s what they are for after all

Turns out it’s the coordinator lambasting me for being out and yet still thinking I am too poorly to go to the surgery for a blood test! Wouldn’t you think that it just might occur to a nurse that I couldn’t get to the phone? Thank goodness we all have each other on here…I cried and I cried! Just a bit fragile at the moment!

Take care, love to all, Nina xx

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Thanks for all the replies, thank goodness I can rely on everyone on here to understand.

Oh Nina, sorry you are still going through it. Don’t worry I never make the phone either. Just can’t get off my chair quick enough and when I do get there you can be sure my mobile goes off and it’s nowhere to be seen. You would really think the district nurse would know better than to jump to conclusions.

Really hope you feel better soon.

Mags xx

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Hi,

We all have our ‘moments’ don’t we! I try to refuse to be made to feel guilty and upset by lack of empathy at times [their’s not mine]

It’s their problem Nina not yours. Even when you’re feeling tired, unwell and a tad weepy. Try not to let other’s impatience get you down. I do feel for you.

The following ramble may help.

Yesterday I crashed into a deep sleep on the sofa in the evening after tea, which I pre-prepared and saved in the freezer, with son and his family of four in total visiting from York inthe first time in over a year. Was I embarressed or not! I should have been wide awake and involved with them. After a bed-time drink and off to bed. I slept soundly till 4 am then woke and couldn’t get back to sleep. Up then and the usual cup of tea in the snug hoping I wouldn’t wake anyone with my clattering in the kitchen. Off back to bed about 6 am. Crashed back to sleep and did not wake until 11 am to find 2 surveyors and my husband going round the house to give us a pre-selling valuation. I had completely been dead to the world and forgotten they were coming. We’re having to move to a more suitable home to meet our needs. It was a fast dash to the loo, shower, got dressed and pretend all was well and normal. There’s me with wet hair and a pink face. Wing it - I say.

Fatigue is a funny old thing!

My poor husband was the model of discretion, bless him. I hurredly checked the family weren’t embarressed either. Now I’m having a chuckle to myself.

Just another day in Anne’s household.

Thanks again for listening.

Kind regards, Anne

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Hi Nina

Well that just about takes the biscuit, doesn’t it? If the nurse doesn’t get it right, what hope do others have!

Chin up, hope you feel better soon ((((hugs))))

Pam x

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Robin,

Your daughter is right.

It’s knowing that there are people out there, some we never hear about, who are a lot worse off than me.

It’s that thought that gets me up in the morning.

It’s that thought that gets me to the gym for Tai Chi.

It’s that thought that makes me do the ironing (not all of it, I’m not a complete idiot).

Someone once said, God helps those who help themselves. If you won’t make an effort you really can’t expect those around you to have much sympathy. And I’m an atheist.

And no apologies for the Tough Love. I’ve got PPMS and I know where that’s heading. If I don’t fight the tiredness, the spasms, the medication side effects, the fear, I’ll be in a wheelchair by Christmas. I apologise if my honesty isn’t tempered with a little tenderness. but that’s the way the world is. I didn’t make the rules.

Go for it Robin! You can do it!

If you really want it.

Anthony.

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The point is Anthony I do help myself. Three days a week I get up at 5.00 am to go to work for 6.30 am and work 7 hours which totally wipes me out.

Its on my days off that I don’t have much energy but I still try to keep the house clean, do the laundry and ironing. It’s making the effort to go out to lunch or organise small breaks that I have nothing left over for.

I am certainly not looking for sympathy only a bit of understanding. I don’t need tough love, I am tough enough on myself.

Mags xx

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Hi Robin I have a little idea of how you feel I worked on a farm long hours at times 7 days every second week at times

It got to the point that’s all I did till I could do no more the doctors told me stop even though the dwp stopped my E S A

I managed to retire from work with the help of my docter and local welfare officer

For a few years I had little time for my family but now I see my daughter and grand daughters

Robin don’t push your self to hard and use your energy in a good way g

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Sorry Anthony but I disagree. Has it ever occurred to you that some people have worse fatigue than you? Or MS is affecting them more than it is currently affecting you?

There is no way I could go to the gym. After getting dressed I would need to lie down for an hour or so. A trip outside completely does me in sometimes for days afterwards.

The idea that you can fight MS is complete nonsense. You might be able to fight it now…good for you…I hope you can continue to do so…but please don’t judge those of us who are completely overwhelmed with fatigue and symptoms that make every minute of every day and huge effort.

I know you mean well so this is not a hostile message and hope you won’t take it as such…but for some of us fighting MS is the worse thing we can do as it’s then a case of being in bed for days! Sometimes just getting to the toilet and back is as much as I can manage. I hope you never have to deal with this level of fatigue,

Pat xx

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Mags,

I am totally with you - I too work 3 days a week (when I can) and the 2 days i have off are generally “rest” and potter days.

I hate not being able to do as much as i used to and admitting to people that I can’t commit to things has taken a lot of coming to terms with.

My 2 daughters (24 and 15) don’t get it - i have sheltered them from my illness as it took 3 years to get to diagnosis. My eldest will ask how I am feeling and when i say I am tired she will say - oh dear - and then ask if i can have my 2 year old grandson overnight!!!

My husband - although he is amazing - will make a comment like - come on - lets take the dogs out - exercise will do you good!

I echo what has been said by other people on this thread - everyone is affected in varying degrees. listen to your body - do what you can when you can and learn to say no to people without guilt (easier said than done I know)

Sending big hugs xxx

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