fatigue : I am so fed up with the fatigue. it is... - MPN Voice

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fatigue

Stanley28 profile image
18 Replies

I am so fed up with the fatigue. it is stopping me doing things i want to do and turning me into someone i don't want to be. i just want to get on with my life :(

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Stanley28 profile image
Stanley28
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18 Replies
Rachelthepotter profile image
Rachelthepotter

I agree. Resting gets boring.

Sand-Dancer profile image
Sand-Dancer

Not a good word I know but I call them my 'knackered' days. I've had one today but know I'll be ok tomorrow so onwards and upwards as we say up north!

Stanley28 profile image
Stanley28 in reply to Sand-Dancer

today is a good day - so i am sharing your optimism (and swigging back on the iron) :)

Aime profile image
Aime

Hi, I know those fatigue days are horrid when you just want to get things done, but can't -every sympathy. Sometimes I find I can fight the fatigue but it does get to the stage I have to listen to my body and rest.

Every sympathy and lots of E hugs.

Kindest regards Aime x😺

eire profile image
eire

So sorry you're feeling like that at the moment Stanley. Getting used to and accepting fatigue is really tough but unfortunately it's part of the challenge with our MPD's. We are still the same people and still have the same minds/dreams we had before diagnosis. The important thing is you are Stanley with a few problems but you are not defined by your illness. Don't know which one you have or for how long but you're not on your own that's for sure. We all have bad days usually followed by better days but i do so absolutely agree with your frustration at not being in a position to do what you used to do!!!!! Hope tomorrow is a better day for you.

Stanley28 profile image
Stanley28 in reply to eire

Thank you Eire - yes, today is a better day. i am struggling with acceptance because it isn't who i am. i have always prided myself on my high energy and detest it when i can't do the things that i want. but when i step back i can also see that i do still pack a lot into my week - just sometimes i need to pace myself xx

harleydavidson profile image
harleydavidson

Hi Stanley. I know how you feel, yesterday was horrible, but so far today I feel more able. I hope that today is better for you. Mel x

francesb profile image
francesb

Hi, I do sympathise, I've tried to organise my life around it so I do everything I can earlier in the day eg lunch with friends instead of dinner, and don't go out in evenings any more. If I feel awful after lunch I have a lie down for an hour but try not to. It's infuriating but I'm learning to manage it. I also find always having water with me is essential, if I feel dodgy when I'm out, or any time, a drink of water often helps for some reason. Good luck, I hope you find ways to manage so you can feel happier. Best wishes, Frances.

Stanley28 profile image
Stanley28 in reply to francesb

Thank you Frances - i think the struggle for me is that i work and study and i love what i do and take a huge pride in being good at it. maybe as i move towards acceptance i will learn to pace myself a bit better - sometimes we just have to accept and compromise... i don't think i am there though yet :)

Fika500 profile image
Fika500

I fully sympathise with the way you are feeling Stanley- it is distressing/frustrating to be fatigued. The frustration can compound the fatigue, so if possible try to accept the times when you can't do what you'd like to and make the most of the times when you can. You will gradually learn to pace yourself and manage the fatigue. It may be possible for you to be referred to a fatigue clinic- they can help you to manage it. If you're finding it hard to cope the MacMillan one to one service may be able to offer you some support and guidance. Best wishes.

Stanley28 profile image
Stanley28 in reply to Fika500

Thank you Joe - i never thought that the frustration might compound the fatigue! what a useful insight. maybe though acceptance it will become easier to manage

Fika500 profile image
Fika500 in reply to Stanley28

Yes- any form of stress can be quite debilitating so it really helps to accept what you can't change & work around it. Sometimes the way you let yourself percieve the situation /think about the situation can help too. For example,instead of getting distressed/angry/ frustrated/down about being unable to do something just say to yourself , 'I never just sit around but now I have the perfect excuse to chill out & watch a film/read a book etc' Best wishes.

cwayman11 profile image
cwayman11

It's rotten but hang in there. X

conno61 profile image
conno61

My fatigue has got that bad I'm having to take early retirement (I'm 55). Not leaving me in a great financial position but I value my health before money. I'm just getting over kidney cancer and losing a kidney and my ET is only making recovery harder. In fact my ET symptoms have worsened, hence having to leave work.

Stanley28 profile image
Stanley28

Thank you for your kind and thoughtful comments. i am not sure why - but knowing I am not on my own helps. acceptance is definitely something i am struggling with - but i will get there. this morning was a good morning xx

ourlife profile image
ourlife

Hi, Stanley28

My biggest complaint has always been the fatigue, and I remember sitting in a forum at Guys hospital listening to a Dr talk about excersise making fatigue better! Ha I thought the last thing I want to do when feeling so tired.

To cut a long story short I have to admit it did help, I started just walking the dog more, then jogging the odd few metres, then riding a bike, a year in a gym, now I referee to football matches a week during the season. Sometimes I feel like I have been hit by a steam train and am good for nothing but other times I feel a whole lot better, I have learnt over time my limitations, when to rest and when to be active, by no means has excersise been a cure but it has helped me more than I thought it ever would.

Good luck and have fun,

Ourlife

beetle profile image
beetle

The fatigue can be a real problem especially when accompanied by insomnia. I know we don't wake up refreshed from sleep with this sort of fatigue but sleep gives us a fighting chance I feel! Hang in there. There are good and not so good days. We have to roll with the punches.

Dazakella2010 profile image
Dazakella2010

Hello....

I feel exactly the same.... it will

Be a year in February since I was diagnosed.... I wonder if I will ever feel myself again!

I was diagnosed with ET in March.... I suffer with extreme fatigue and have had a headache since 14th February.... I wonder if I will ever feel myself again....

xx

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