I’m new to this forum but I have Essential thrombocythemia (ET) and have lived with it for 20 years. I have days where I have fatigue and I struggle some days getting out of bed and doing normal things. Any tips on how to manage this better. Thanks
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A great big welcome to our forum and a brilliant question.
Firstly I will copy you the Blood Cancer UK page on Fatigue
Blood cancer and fatigue | Blood Cancer UK
I have lived with another blood cancer for 20 years and fatigue is on of my main symptoms.
I have got to know myself and how I tick over the years.
I have realised my fatigue comes on either immediately or up to 48hrs after I have overdone it by what personally stresses me, or overdone it emotionally, psychologically, physically, medically, or practically.
Since diagnosis I do not deal with what personally stresses me well, I try to keep my life as manageable as possible.
Sometime I need to have a nap other times a duvet dive.
I have a sleeping routine, but am also kind to myself
Over the years thinking has changed and so has mine. Sometimes when I need to really push myself and get outside and get fresh air and appropriate exercise, It gets me out of myself and I walk and smile at everyone notice nature and come back feeling a lot better
This is my personal response and not a medical one.
Be kind to yourself and I look forward to hearing more about you.
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Hi @Staceylouise and a big welcome to the forum.
I hope you find value in sharing experiences with others. Often it helps to share with people that understand.
I have a different blood cancer but I know from reading posts on the forum that fatigue can be a really tough symptom and can really impact our daily lives.
I really hope that others can share their tips with you.
I look forward to learning more about you 
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@Staceylouise the answer I have found sometimes useful now I know why I am feeling that way, is the mantra of the little train pulling that other train up the mountain. In the words of Burl Ives,
“I think I can, I think I can, I think I have a plan,
and I can do most anything if I only think I can.”
Then imagine what you can do with the day if you get up, even if it is just sitting with a cup of something looking out at the sky.
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Hi,
I heard these lyrics from an Ed Sheeran song (Amazing) and on days when it all gets a bit overwhelming I remember these words
Yeah, I’m trying to feel amazing
Yeah, but I can’t get out of my way, and
Yeah, wish I could feel amazing
But this is all that I can feel today
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Thank you for that it is very helpful because I start to feel guilty about it. Some days it’s hard to just get out of bed and when people say you’re tired you just need to get on with it they just don’t understand that this is a different thing to being tired.
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Oh @Staceylouise no, I always say that until you have had fatigue you cannot imagine what it is like.
Be kind to yourself and perhaps try not to listen to other people who don’t understand, we understand on our forum.
Look after yourself and please do keep posting on here
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I know thank goodness I have a wonderful support group around me. What really winds me up though is with Essential thrombocythemia (ET) you don’t really see what happens on the outside but internally it is very different
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@Staceylouise my cancer nurse put it this way, “It will be harder for you, because you have no lumps or bumps, visible markings and no visual identity of having cancer. This makes it harder for others to understand, so it will always be down to you to help them understand the cancer you have”
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Oh @Staceylouise I really agree invisible illnesses are so difficult, that is why I just hate it when people say to me ‘oh, you do look well’ when I am feeling really yukky inside.
I think people cannot understand unless they have experienced it.
That is why our forum is so special.
Be kind to yourself
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Hello @Staceylouise glad you have found the forum here and can find some support and empathy which in itself goes a long way doesn’t it! I am an Essential thrombocythemia (ET) patient like you and was diagnosed 18 years ago so we share the long time ongoing experience of living with the disease. Yes fatigue is a huge part of it isn’t it and I know I have found as the years have gone by that has become a bigger and bigger part of my life with Essential thrombocythemia (ET) and it impacts me a lot now. And yes it’s a very unseen part of having a chronic blood cancer and like Erica mentions “but you look SO WELL” can often be the reply when you attempt to explain how you are feeling - I know I tend to use the phrase cancer related fatigue these days or my own word for how I am is “shutdown” as I can feel the shutdown starting and that I need to be home before it takes over and I literally can’t do any more.
So practical bits for me is really doing things as “small bits” in my day and not try to go further than that, for me I need to do my small bits in the morning and just balance that each day to get things that need to be done some mornings and also have mornings when my small bits are something good and enjoyable for me a coffee out or a walk in my local park, something that recharges me myself (the nice phrase Erica always uses is being kind to ourself). I find I need to keep up eating good proteins each meal and when out and about I always have my bottle of water (hydration so helpful with MPNs isn’t it) and for me a little jar of nuts so when I feel a bit weak and tired out I have a handful of those for some energy. Whereas in my early years of Essential thrombocythemia (ET) I was working full time then down to part time, that’s not been possible in recent years and so now I can and actually have to have time at home to rest, recoup and go with it when the shutdown has started - took me a while to not feel guilty after a busy lifetime of work and looking after everyone else - but you know all of us deserve time to care for ourselves and it’s actually fine to rest and do just that - the benefit of some stare into space time! For me I have to do this in the afternoons. I find where I am with the disease now I can’t do much so have worked to find enjoyment in the small bits that can be done and left behind trying to do what I can’t now - that has involved practising the power of saying NO to things I can’t do, take on, join in with friends and family etc etc, takes a while to be able to do that (and can still be a work in progress😜) but is one way to help people realise you can’t do what you used to. I imagine you are on treatment too so that has its own fatigue effects too doesn’t it so always handy to keep chatting about tweaks with your consultant - I have done years on Hydroxy and recent years on interferon both of which have had their own fatigue side effects. It can be worthwhile even on hardest days to do a little walk, it does help even though it can be the last thing that feels right but there is definitely something about walking and MPNs that does assist - but accepting there are days when it isn’t possible.
I will attach this link for a fatigue webinar that Leukaemia Care had it is so helpful and understanding. Leukaemia Care also do online support groups and specifically have one for Essential thrombocythemia (ET) patients sometimes it’s nice to just to touch base with others who know just how it all feels!
Keep us posted how you continue to get on
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Hi @Staceylouise and @Jilly20 it has taken me a lifetime and 20 yrs with my blood cancer to say ‘NO’ and I have found the world doesn’t fall apart.
After lockdown I resigned from roles I was not enjoying.
Also the difference between being selfish and practising self care and looking after myself as well as I look after others.
I never brought myself treats as I would for others.
Thanks to you both you have made think and practice what I am preaching !!!
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