@beammeup

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beammeup

Let's Rename Fatigue.....

Attended a brilliant Fatigue Management workshop on Monday. I suggested we rename MS fatigue/tiredness as 'Clinical Fatigue' to give it a proper, medical name that will be taken more seriously by people. Don't know about you, but trying to describe it to friends is a nightmare. What does everyone else think? I wrote a blog post about it yesterday - www.stumblinginflats.com

roni

@roni

Sounds like a great idea. Should stop well meaning 'friends' telling you how they know how you feel because they're SO tired too. And if its stops them doing that it may stop me wanting to batter them!!! Ha x

msue62

@msue62

Totally in agreement with you there <a href='https://shift.ms/community/people/beammeup/' rel='nofollow'>@beammeup</a> It drives me insane! Read your blog it's great but although I was going to show it to people to try and let them know about tiredness and MS in the end I thought would they understand? Oh well.

msue62

@msue62

<a href='https://shift.ms/community/people/roni/' rel='nofollow'>@roni</a> yeah batter them too right. ★

beammeup

@beammeup

I would batter them, if I had the energy, lol.

pottypete

@pottypete

I agree, just like you can have depression or clinical depression. It may help some distinguish between being tired and absolutely non-functionally exhausted.

Marjolie

@Marjolie

Hi <a href='https://shift.ms/community/people/beammeup/' rel='nofollow'>@beammeup</a> I had a read and completely agree, but I think that people will just never get 'it'... trying to explain to someone last week that even sleep can be tiring, they just responded with a snort of derision and a blank expression. Your other post 'working from home' got me more. Have you found another job? Do you have to work? And lastly, how f*king dare they.

beammeup

@beammeup

I know what you mean! So hard to describe it to other people who are 'tired', lol. Working from home is driving me slowly up the wall. It's just a two month notice period I negotiated, so better than nothing I suppose. I did have a fantastic job lined up, but they called me yesterday to say it would be put back a few months. Shit. x Drafting a grievance letter to Evil Bosses right now...watch this space! x

reddivine

@reddivine

It aint being tired at all! As I said to my wheelchair supplier, its falling down stupid tired,just point me at a bench tired, its I forgot the drs appt cuz I was sooo tired. Those pillows at MS Life 2012 had it right: FATIGUE CAN HIT AT ANY TIME. If I hadn't been travelling by train I wd have got one!

beammeup

@beammeup

I didn't see those pillows! Would have bought one if I had. it's a bit like that Paul McKenna programme when he brings someone onto the stage, taps them on the head and they're instantly asleep. That's me! From wide awake to fast asleep in less than one second, lol. x

msue62

@msue62

Do you find one minute you are ok and managing and the next you can hardly move for tiredness? Total inability to move hardly? That's it! X

beammeup

@beammeup

Oh yes!! Am a lot better after Alemtuzumab treatment in the summer, but still strikes out of nowhere. Any time, any place! x

pillbox79

@pillbox79

i shared this article with friends and family for the exact reason. soo frustrating when you work on projects with a friend and they are battling their own health issues yet - can't understand the feeling of "I didn't think i was going to make it to the bus stop last night I was so hit by a mack truck exhausted" friend's response: "I'm trying to have sympathy but..." http://www.bbc.co.uk/news/health-18207490

lightningduck

@lightningduck

'sympathy' and 'empathy' are not really the same. I can have sympathy for someone else's condition even if I have not experienced it. When I've experienced it myself, than I can have empathy

pillbox79

@pillbox79

i agree with that completely - i think my issue was the 'but' part :) or maybe the 'trying' in combo with the 'but' because, i didn't have to try to understand what this friend was going through at the time of his health scare. i was just there for him if he needed me.

lightningduck

@lightningduck

<a href='https://shift.ms/community/people/pillbox79/' rel='nofollow'>@pillbox79</a> - agreed

msue62

@msue62

<a href='https://shift.ms/community/people/pillbox79/' rel='nofollow'>@pillbox79</a> I liked that link to the BBC website on MS. I agree so much with you about the but... but what? For goodness sake!

msue62

@msue62

<a href='https://shift.ms/community/people/lightningduck/' rel='nofollow'>@lightningduck</a> I get confused with sympathy and empathy too. ★

reddivine

@reddivine

Oh yes mssue! Am ok till 2 or 3 pm..........then its can't finsih sentuences. (see wot i mean!) and being entirely brain dead. Or walking and then the legs say, nope aint going ANY further.......

Dave-Luton

@Dave-Luton

When my fatigue hits bad im often bed bound for hours at a time , people really dont get how bad it can be. It's as sudden as someone flipping a switch.