Hello.
It sounds like a bit of an oxymoron but if you imagine a car trying to move with its brakes locked, it might make more sense; if anything does make sense!
Often I’ve struggled to explain exactly why sometimes I feel run down and exhausted.
“I don’t think I’m very well,” I may say. The recipient of my grumble will then expect a list of symptoms; you know, like runny nose, sore throat etc.
I now say that my body feels like it’s fighting something. I can’t identify it other than think of it as an angry immune system beating its head against the wall. Or trying to swat flies in a cubicle of curtains. The more it fails the more frantic it gets. It’s a hot head blowing up at the merest hint of trouble.
My system is just OTT. For days or weeks like this I have a freezer full of meals I’d made earlier because when I can I will.
Sorry to go on but it helps.
Beautiful sunshine here in East Sussex.
Steve.
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Hi, I`m feeling more tired and weaker than usual too.
I did feel like I was getting a cold, after my hubby caught it from my carer, but it didnt develop. Maybe my immune system is fighting on my behalf and hence the extra tiredness!
pollsx
I once explained my over the top tiredness (not fatigue because that is a whole new level of tired) by the fact that I have to deploy conscious thought and effort to do some things that used to be done with little or no conscious effort.
For me the effort of staying upright and not falling over is very significant. To do “simple” or “easy” tasks I have to use careful strategies and plans. I need to budget effort that other people might not.
Mick
I think of it like a bank balance. With not much credit in mine. If I run out, then I either have to go without spending any more (i.e. get some proper rest), or I go overdrawn. But any overdraft of energy always has to be paid back. In the form of rest.
Sue
A good analogy Sue, sometimes the interest is worth it and sometimes not - that is where the judgement comes in. 26 years in and I still get it wrong on occasion.
Mick
I dont think MS or HSP will ever stop surprising us…not always nice surprises either.
Be wary of whatever might happen.
pollsx
…Bring it on, Aware : yes but Wary : not so sure. Clearly we need to not be daft. There is enough of a teenager left in me that I can only understand the boundaries if I keep prodding them. Todays boundary might let me push harder than yesterdays. It is a constant battle, where tactical withdrawals and the odd defeat are all part of the bigger picture. I am also experienced to know that fighting (or pushing at bandaries) is not always the right way to go.
All the best
Mick
Know exactly how you feel … has a couple of good days … today done nothing ! Feel as though my plug pulled out … it’s a friends birthday but really can’t summon up enough energy to go … part of me thinks I need to try go as soon peoole will stop asking but other part of me knows if I do I’ll pay the price …
That is EXACTLY what I thought.
‘Aggressive fatigue’. I love that term.
Other ideas list: ‘Grievous fatigue with intent’? ‘Fatigue with malice aforethought?’
I guess we’ve sampled them all!
Alison
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this is pretty good, although it did not mention using a table to stop your head from hitting the floor…
Luckily I have not suffered with fatigue for a while, now I just get very very tired
Mick
I am not sleep tired…i am just body tired. i have done 3 marathons, then gone shopping. I just feel like my body has nothing left to give and i simply cant move another step and to do so is dangerous as i become out of balance, i have no energy to lift my leg up. I am so fatigued now its an effort to even shop on ebay lol.
Its like walking through quick sand or concrete its way too much effort so my recliner is my friend all day and I just watch stuff on netflix or amazon to while away the time i go to bed at 5pm, i am usually asleep by 7/8pm. I cant sleep during the day I wont let myself as i wont sleep at night.
Fatigue is my enemy at the moment i am doing less and less yet i seem more and more fatigued. It was my birthday last week and just having visitors wiped me out.
I wonder if its the weather the humidity or something as a lot of my MS friends feel drained and out of sorts.
Crazy Chick,
Loads of stuff like weather and mood can have significant effects on fatigue. I very much understand your description of how you feel. Even lying down doing nothing feels onerous. On my bad days my days achievement would be getting out of bed and feeding the cat at some point. At those times nobody seemed to understand, I managed to find descriptions of fatigue from ME and MS sufferers which I shared with my wife and family to try and explain how I was feeling, this was less effort for me than trying to get the words out.
As a child of the 60s I was very dismissive of ME ( called “Yuppie Flu” in the early 80s ) but my MS has educated me with a new perspective.
All I could do was wait for these bouts to end and try to eat and drink sensibly
Good luck & I hope things are better soon.
Mick
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fatigue - all conquering/all knackering. But why use the term ‘fatigue’ at all. If we’re unwell after an operation or after a bout of flu we never say we’re fatigued. We say we’re ill/unwell etc. The trouble with telling someone we’re fatigued re m.s. is that they immediately compare it to the fatigue they feel at the end of a day’s work or after a night out and really have no idea what we’re experiencing.
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Weeks mine has gone on for this time. Coincided with new medicine so I suppose both things are here at the same time. However, the specialist nurse this morning said ‘Well done’, which you never here, for carrying on. So, well done everyone for carrying on. This week I am hoping to rope in as many people as possible bringing things and opening lids, which I never do, but this time I have no choice. Respite needed soon somewhere quiet with lots of fresh air.
Absolutely, fatigue is a rubbish term. If you tell someone who knows nothing about it that you are deeply ‘fatigued’, they can be forgiven for thinking you’ve had a hard week and tomorrow you’ll feel better after a good nights sleep. Fatigue often sounds a bit weedier even than tired.
We need to re-label MS fatigue. Call it something bigger, scarier, and which isn’t in general use for being a bit tired.
Alternatively, educate absolutely everyone you might possibly come into contact with: fatigue is not a synonym for tired!
Sue
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indeed the ambiguity of the term does us no favours. It needs some convoluted fancy ass term or better still an acrnym.
Chronic Nearly Pole-axed CNP
or
Chronic Relapsing Autoimmune Paralysis CRAP
I will shut up before I go too far
Mick
Like Seriously Horrid Invasive Tiredness ETC …
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ok new word needed for fatigue
howbout super knackered?
or
??
I never want to wake/get up in a morning. I said to hubby this morning as he brought my brekkie in .
I dont wanna wake up he said,
well it would be better to, wouldnt it?
I said suppose so, then i can go back to sleep
It`s a good job I have a carer each morning, otherwise I might just languish in bed.
I have this feeling of once I do get up, the day starts…with all its struggles, effort and wondering if Ill poo when I am supposed to…
I`ll leave you with that lovely thought guys!
pollsxx…only 4 hours till bed…
Or Fatigue Unlike Chronic Knackerdness!
As in ‘I have F.U.C.K.!’
Sue
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