Struggling with fatigue, like the whole time I’m awake, yes I know I’m doing too much, yes I’m worrying too much, no I’m not doing my relaxing that the OT wants me to do.
But can my fatigue not please just go and take a wee holiday for even just a couple of weeks? I know I’m not going to get this, but other MSers I’ve met are still very active and happy clappers?
I feel like I’m looking at them like …WHAT.??? Lol
sorry, not meaning to moan, just venting
Polly xxx
Polly I have just googled Fatigue holidays and thought I would ask your fatigue where it would like to go for this week long break. At the moment I am struggling to find somewhere to recomend but so far all I am coming up with is HOLIDAY FATIGUE. but so far I am only on page two and there are over four million results
Don
Couple of things Polly… some of those other people (maybe all of them) have RRMS and are in remission.
Secondly, not everyone gets fatigue or gets fatigue 24/7.
I’m sorry to say but I’m in the Fatigue 24/7 group. It never goes on holiday. Wish it would. Wish it would go to Australia and get arrested and put in prison for life!
I occasionally get a good day… feel energetic… but boy do I pay for it later.
Try hard to do the relaxation… and the mindful meditation. Even 5 mins a day can make a difference. Well to be honest Polly I’m not sure it makes a difference to fatigue levels… but it does help to accept it more. That’s the trick as far as I’m concerned… acceptance. Accepting it is half the battle… or maybe it IS the battle.
Take care,
Pat xx
Hi Polly, I feel the same, I get so frustrated at not being able to do simple things. I felt it this morning when I had to leave the bed unmade before leaving the house. I know it does not matter, no-one else will see it. and it is easy just to throw the duvet over - but I just could not summon up the energy.
Then I had to write a cheque, first time I had actually writen anything with a pen for ages, and my fingers would not work properly. It loked like a child’s writng and my signature was all wrong.
Now I notice that half the lettrs are missig on this. Time to rest I think.
Jackie xx
Jackie write a cheque thats a novelty Heather writes them out and I try yes try and sign them.
I pay everything online now my fingers work on the keyboard not good but they do work if you dont mind typo’s
Don
My bank has a note on our account cos my signature never looks the same twice!!
You never realise how many things you do with your fingers, until you can’t do it anymore.
Pam x
I think Australia is the place. I’m away to look for it’s passport, might plank some bad stuff on it so it gets arrested!
Just had to sign my name at the dentist and it would have been as well have been the dog writing it lol
Im fighting the adjustment, but I’m trying to make my MS fit into my life rTher than the other way around. But I am getting annoyed with some people because very few people are aware that there are different types of MS,
When I tell them I won’t get remission they look as if I’m making it up, yes I get better days but not jump around I’m healthy again days. But I can only thank the wonderful people on here for helping me with this diagnosis.
I do love keeping up with you lovely people
Polly xxx
Hi Polly,
I’m afraid that’s just how it is when you mention ms, everyone is such an expert they think they know more about it than you do. You will learn to deal with it.
I have had a few unhelpful comments made to me and have felt like turning into the Incredible Hulk but i just let it go.
i have even had an old lady ask me if I was on the list for a hip replacement.
You have to laugh.
Mags xx
I had a neighbour tell me that she had MS a few years ago.
What do you say? She’s very old so I just nodded and agreed…
Pat xx
Hi Polly,
All these things can be so hard to deal with, I’ve lost count of the number of times I have had to explain to poeople why I can’t take disease modifying drugs. Everyone thinks that there’s just a one type fits all MS!
In my expirience nobody but nobody other than those of us with MS that suffer severe fatigue will ever completely understand.
As Pat and Mags have said you do learn to cope! Sometimes it’s easier to smile sweetly and not get too embroiled because the emotional aspect just overloads the fatigue levels even more.
you’ve got a lot to cope with but you seem to be doing so well…keep your chin up, we will always be around!
Nina x
Nina I just had the smile sweetly conversation with Heather people think they are being nice but in truth they ain’t got a clue of what we deal with if I told them I thought they were being patronizing they would be horrified. In truth they are but bite your lip and smile when all you want to do is scream at them.
Don
I’m sorry Don, I do know how frustrating it is! Keep you chin up.
Nina x
There is always someone quick to say they know someone’s cousin twice removed who has ms, and they are still working, running etc, very few people seem to know ms comes in different varieties.
Having said that, when I was diagnosed back in the 80’s, and the neuro said you have ms, I had never heard of it, let alone different types, so whilst it can be frustrating when people tell you about all the cures for it, it maybe said with the best intention, but also lack of understanding the disease.
Its a very fine line between ignorance and compassion I think.
Pam x
A lady I talked to had a daughter with MS so keenly told me that I’d be fine. even for years sometimes, yes, I just smiled and agreed.
Sonia x
Do you know what makes me feel better? The fact that it has happened to everyone, I had began to wonder what I was doing wrong? I had been ill for some time (2 years) I do feel as devils advocate that maybe some of them were relieved I had a diagnosis, but as Don said I’ve just had to nod politely and bite my lip.
Funny the things how things come up and only you guys understand. Thank you again.
Hope your all settled for the night, hugs
Pollyxxx
I’m in the 24/7 fatigue band as well, Polly. I find myself having to ask myself before I do anything 1) can I do this? 2) is it worth it? and 3) how bad will the payback be?
Most mornings it’s a case of hiding under the duvet and having to coax myself to start the day. Just for a change, yesterday didn’t start like that. It was bright and sunny, and that’s what I felt like too. So it was bath morning, and that went alright, so we went out to Wickes and B&Q to get ideas about tiles and flooring for our alterations, and that went alright, so I had my afternoon snooze and then rallied round to take Mrs A out on our date night for a meal, that was lovely, then I came home. Payback- could hardly get to bed, cold, stiff, aching. Uncomfortable night of confused anxiety dreams.
Taking things VERY slowly today.
Kx
Like Kev yesterday was great fried breakfast overlooking the sea (it was lunch time by the time we got there) today I have been in bed asleep all day cant have been to bad though I am already eyeing up the next breakfast there http://disableddon.blogspot.co.uk/2014/08/tankerton-slopes-whitstable-for-fried.html
I love a fry up
DDon
Kev,
I done this recently when I had lunch with my oldest friend, she is the most amazing person I’ve ever known, and through all my rotten feelings that I’ve had since I met her last Saturday all I’ve had to do was remember our 4 hour lunch (okay I can’t remember coming home, not through any alcohol just exhastion) and it’s made me smile. Therefore the equation ability x worth it = payback totally was right because it was totally with the payback hehehe. The thing is I also have awful weird dreams when I do push myself to do things, sub conscious saying I’m going to mess with you maybe? I love pottering about B&Q dreaming about what we could do to the house, before hubby whisks the wheelchair over to the power tools zzzzzzz
Don,
Im so glad you had a brilliant breakfast/lunch what do they say about the little things? Up here is Scotland we have something called Lorne sausage and the scots call it square sausage, because that’s it’s shape, it is fabulous on a Sunday morning on a bap/roll . Would love for everyone to meet up and try it, I’ll get my hubby to cook lol lol
Polly
xxxx
Yep. Last night I dreamt that some kids were playing (football, cricket, not sure) and their tennis ball rolled over towards me. I thought I’d throw it back, went to do so but realised I couldn’t throw any more. So I thought I’d drop-kick it back, had a go and managed to kick it at least 3 feet! Very hard to face, for a man who used to play a lot of cricket, soccer and rugby!
Kx
Lol I used to do figure skating at competition level, maybe I’ve over used them and that’s why they are giving up on me lol! If only we could go back to our younger days for just a couple of days eh?
Polly xxx