Fatigue or Not Fatigue? That is the question!

Living with and after blood cancer
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I am wondering about ‘fatigue’ and other people’s experience of it.

I was diagnosed with ‘complex’ Myelodysplastic syndrome ('MDS')/MNP almost a year ago now and, after a number of months of very regular blood tests and consultant appointments, I was put on Watch and Wait. That to me is good news, but I’m also happy that I have just received a date for my next appointment, which will be early November.

At the past appointments I have always been asked, among other things, if I have felt/suffered from fatigue. I’ve always sort of brushed that question off. As a woman of maturing years who lives a sedentary lifestyle, and doesn’t always managed a decent night’s sleep, I’ve pretty much always, (and I thought honestly), put my tiredness down to my own personal being. I know that very often the less you do, the less you have the energy and enthusiasm to do things!

Recently, I have been pondering a lot about fatigue. I’m wondering if I’m wrong to dismiss it so lightly. Today’s a good example - I managed to get up and out for a morning appointment. Drove home for an hour then popped out to do a quick errand. Now I’m home again and really just want to curl up and sleep, but have a lot to do with the rest of the afternoon and a meeting to attend this evening.

Some days I just want to cancel everything and stay in bed. Some days I do! (Although I do my best to keep that to a minimum and fight against it.)

If you experience ‘fatigue’ that you believe is part of your Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN'), please would you share what it’s like for you.

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Hello @Hepzibah

Thank you for taking time to send your post into the forum

I’m sorry to learn about your diagnosis.

You raise a very interesting question, one I hope you will have a number of responses to as everyone’s experience of their condition is I feel unique, and fatigue will also be impacting people in differing ways I’m sure.

My experience of fatigue has been sporadic.

After my diagnosis, In early April 2025 (I have Chronic lymphocytic leukaemia ('CLL')) I must say my shoulders dropped some what, and I feel that the lack of energy I felt was possibly down to my mental health taking such a blow from the diagnosis.

I retired from my full time position in a bank in early March 2023, and I was of course unaware of any medical issues at that time but I must say being 55 as I was at the time I just put my tiredness down to the amount of hard work I was committing to.

Now that I have my diagnosis, things make sense, and I can understand better why I feel low on energy.

The way it impacts me is my arms ache and my legs do to but not as much as my arms. I sleep well (i always have) but I can take a power nap of 20 or 30 minutes most days in the late afternoon and have no impact on my night sleep.

I tend to just go with it - if I need to rest - I rest.

You mention a 1 hour drive, and to be honest it would be no surprise to me if I felt a little tired after driving for an hour - so I do tend to take a break if on a drive of more than an hour. I have family in Manchester and that’s over 2 hours away for me so I stop, charge up my EV, have a coffee and a loo break, then get going again.

Adjusting how I tackle things is for me the key. Yes I would love to do lots more every day - but it just isn’t possible, and taking care of ourselves it very important I feel.

I hope my experience above has given you a little insight into how I cope, and thank you again for such a great question that I am confident lots of people will want to respond to

Take good care and do feel free to let us know how you get on

Kind regards

Mike

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Hi Mike,
Thank you for your response.
I never cease to be amazed by how unique we all are, but that is partly why I would like some feed back on different people’s experience/definition of ‘fatigue’. Recognising common symptoms, or being aware of various potential symptoms, may, or may not, be helpful to many of us. I think it may be helpful too for those that support us, to help them understand those ‘I can’t cope/don’t have the energy’ days.

I think I have mislead you about driving - I was at home for an hour, not driving for an hour. I’ve always enjoyed driving and it is normal for me to drive long distances, 4-5 hours often and in fact I shall be doing a 4 hour one this weekend. I do take a break roughly half way, grab a coffee and stretch my legs etc. I have realised more recently though that I need to consider breaking my journey’s up a bit more - again I’ve been blaming age when in fact it’s probably a combination of things!

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Good morning @Hepzibah

I hope your feeling strong this morning

Apologies if I misread your post regarding driving.

I have a long journey coming up in early November as my wife (aka the management) and I celebrate our wedding anniversary on the 9th and we will be in an Airbnb we’ve found in the Scottish Highlands just 10 minutes north of Dunoon. We live on the outskirts of York so it is just under 290 miles by car and as such we take a stop every hour or so to let the car charge up as we drive full electric and we grab coffee etc.

Our approach is . what’s the rush - we got all day so we just take our time - set the car to 65mph and take our time.

As for fatigue - I’ve done the gym this morning (5 km on the treadmill (walking - my running days are long gone)) then a couple of the strength machines. The 5km gives me just under 7000 steps for the day so its a good start and i then pace myself for the rest of the day.

Stay strong - take good care and always feel free to reach out when you feel you want to - it is lovely to hear from you

Kind regards

.Mike

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Hello @Hepzibah,

You’ve had some great advice from our lovely @GenesisDevice. I suspect plenty of people reading will recognise that habit of putting tiredness down to age, sleep or lifestyle, and wondering where the line is.

It might be worth jotting down a few notes between now and November so you’ve got something concrete to take with you. And if things get worse before then, or anything new crops up, you don’t need to wait for the appointment; you can ring your team. It could also be a useful thing to share with the people around you, as you mentioned.

Our fatigue page might help with the “is it or isn’t it” question, including the point that fatigue can hit even when you’ve rested or slept well. There’s also previous threads, like this one about MPNs and Fatigue has lots of people describing what it’s like for them.

Hopefully others will add their own experiences here. And if you’d like to talk any of this through before your appointment, our Support Line nurses are on 0808 2080 888 (option 1) or support@bloodcancer.org.uk. We have been experiencing a few issues with the line recently, so I think it’s closed tomorrow for testing.

Take care,
Ceri - Blood Cancer UK Support Services

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Gulp! Just reading what you’ve done at the gym this morning has tired me out! :wink: :grin:
I have managed to attend a meeting this morning and then a very brisk (for me) brief walk. Now it’s the task of checking the weather forecast and attempting to pack the right clothes for a week in Suffolk. Going with a couple of good friends of even more mature years, but who’s lives work at a faster pace than mine these days, but they are very patient and kind with me and I’m blessed to have them by my side. We have some ideas of places to visit, and we’re also packing some art stuff to do if we can’t or don’t want to go out, so it will be a relaxing week overall and their company is good therapy too. So all in all it’s going to be a good week once there. :blush:

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Thanks @Ceri_BloodCancerUK
I will look up the links you gave about fatigue.
I do always write questions/changes etc down before seeing my consultant. In fact, I sometimes email them to her ahead of time too. After my first such email, she and the specialist nurse commented that they should encourage more patients to do this. I find it helpful because I don’t forget things, and they find it helpful because they know what I really need answers to or advice for. As I see it it’s a win win situation and time saver too.

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@Hepzibah I have an Myeloproliferative neoplasms ('MPN') (Polycythaemia vera ('PV')). Happy to share my experiences of fatigue. My job is interesting and stimulating so keeps me going during the week. My commute involves cycling so I’m reasonably fit. As soon as I stop though, the fatigue hits. Sometimes I have a short sleep after finishing my lunch, (which helps). Occasionally a tea break is enough to get me yawning. In the evenings, I get home, eat and shortly afterwards start feeling sleepy. I can use about half a day on Saturdays and Sundays. In the afternoon I might be on the computer or doing some DIY and will feel it’s to much. This is mental fatigue rather than physical. I’ll then start reading but after ten minutes even this is too challenging so switch to TV. Within the next ten minutes I’m asleep (irrespective of how interesting the programme is). This might last an hour or so. It doesn’t affect my sleep at night unless it goes on too long.

I’ve come to realise that I’m using adrenaline to keep me going and push the fatigue back. I’m not recommending this; I don’t think it’s healthy. Difficult to change things though.

Lucky

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Hello @Hepzibah

Thank you for your kind reply

Have a restful week in Suffolk. It is somewhere I have yet to explore so I might have to tick that one off the list and get myself there next summer

Take care

Mike

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Good idea, and I would add a visit to East Ruston Old Vicarage Gardens and the surrounding area (It’s Norfolk rather than Suffolk of course).

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