Hi, I am trying to understand the ‘new me’. I am so so tird. It changes and sort of hits me then, for no apparent reason goes. It does not seem to have much connection to what I do. Does this make any sense to anyone ?

hi sarah

our poor brains are working overtime trying to get the correct messages through.

we have to concentrate on remaining upright and that’s knackering.

so at least we have achieved a lot even though nobody sees it.

it is horrible though.

carole x

Yep, I think we can all relate to that - I find it’s the worst thing about this whole Damn Malarkey - you do something routine like hoovering, and then you’re too fatigued to move even to put the hoover away! Rest often, and when you need to. Don’t try to plough on through it… you just have to pace yourself and be aware of your limitations. Listen to your body, be aware of what it’s telling you, and act on it. When fatigue hits you, it’s like being run over by a truck…

Yep, spent three days in bed last week. Now feeling more like it and off and about. It just hits sometimes even when I am in the middle of something. For me, I have to stop immediately and give in to it then I get the benefits following a good rest and quality days rather than just trying to get through them.

I am really REALLY struggling at the moment with fatigue. Took half a day off work on Tuesday because I just couldn’t cope. I don’t work on Wednesdays so yesterday I just slobbed about. The fatigue kind of drifted away at about 6 last night and I was feeling fine this morning. Now in work and I feel like crap again. Another thing impacting on me at the moment is my mood…I have a noisy office and some VERY annoying colleagues. I feel angry and irritable and other than put up and shut up there’s not much I can do.

The whole fatigue symptom has me totally confused and I get so frustrated trying to understand it.

I walk round to Tescos (a few hundred yards) and get a couple of bags of shopping. I get home and I`m totally knackered and have to rest.

I have got an indoor bike which I use for exercise. I can go on that flat out all day long and not notice any tiredness. Why?

Perhaps I should get a bike to cycle round to Tescos on.

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Do you feel things and people irritate you a lot more now than before?

Thank you one & all for your responses, weather it is work or family or other commitments it, would be really helpful to be able to plan for and manage the fatigue. It’s not just that it feels rubbish, it’s more when it moves from continuing despite feeling really really rubbish, to if I don’t sit down I will fall down, to I have taken some time out & I still feel rubbish. Oh & sometimes, getting board with waiting to feel better, getting on with stuff & randomly feeling better. Guru, how can anyone live a positive life like that ? I keep telling myself that I will get an angle on it soon, but I have not so far, hence looking for ideas to plan/manage it.

OMG yes!

I’m not sure you can ‘manage’ MS fatigue for the very fact that it is so damn random. The whole ruddy disease is random…we don’t stand a chance of managing it all

Yesterday, I had an appointment. I had a nice walk which took an hour and a half by the time I had got there and done bits and bobs. It was pi------- it down. I looked about and I was the only one smiling. Everyone everywhere was just rushing about looking miffed and pained whilst I was dawdling about at my usual snail’s pace. I was soaked, but actually refreshed. All the paths were flooded so my feet were wet, the robins were bobbing about, my flowers looked happy after having a big drink. When I got home bloody shattered, I took some pills, had two cups of tea, a planned ice cream and settled down for an afternoon of really edgy American comedians on netflix for a good laugh. Had to stand in the bath first and take everything off, even my undies were soaked with the rain.

Sometimes, it isn’t exactly full on pelt life, it is just what it is. Still learning to cope with this exhaustion but as I said to my Doctor yesterday, each person is different and it is a continual line of change sometimes without reason. He always makes me laugh, he tells me about the biochemisty of things and we discuss it in detail, about how we are all an individual cooking pot without rhyme or reason.

So, despite the tiredness and after the laughing yesterday, I put a new cd on and played it very loudly at midnight last night and enjoyed my fiver’s worth of new music. Junip, if anyone is interested. Neighbours can’t hear, I live in a bungalow and everyone is either deaf or of an age!

It is about finding your way, one of the hardest things is learning from the exhaustion and knowing when and what to do with it. Most important is not to spend any mental energy getting angry (unless of course you want to go outside and kill some plants which I highly recommend day or night, does me a power of good even in the winter), but spend mental and physical energy sorting it out. This morning I have ordered some small things to help me with my energies and what I like doing. I have a very small life now but today I have done my yearly ordering of gardening help tools, magnifiers (colouring/reading), other stuff which enables me not to struggle but to have an easier life.

I suppose for me, it is easier than for some people as I have always been known to be a bit clumsy, ‘random’ and flaky. Although I never used to walk in to so many things or nearly get knocked out in the garage every time I go in! I also plan things (with my GP) so if I want to go somewhere I will flippin well go somewhere, but plan months ahead, rest, eat, exercise if possible, strengthen certain muscles and live in a regime which will at some point enable me to go somewhere for a day or a week. Then when I get back, I have to plan a week of nothing and pain to get over it. This is my pyjama week, it saves on washing.

Hi I’ve had ms symptoms for 3 n half years now .last few months have been awful I’m back to nuerologist tomorrow. Last time I saw him 3 years ago he said it was all in my head due to my job.I’m a carer.mri cane back clear. Since then I have bladder incontinence every day numb left foot .pins n needles on right arm n leg. Both legs feel like concrete. I’ve had vertigo .reatkeaa legs at night which I’m now on amitriptyline for . Severe back pain .just generally fed up with it .can’t do house work as I have to lay down . And when I’m really tired I fall over to one side .can’t do the balance tests as I fall .I’m worried when I go tomorrow I’ll be told it’s all in my head again.has anyone else had this said to them when an mri comes back clear? .many thanks