Feeling Mentally Exhausted/Unable to funtction

Recent diagnosis
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Hello,

I’m 41 and was diagnosed with Cal-r Essential Thrombocythaemia ('ET') in June this year, then had a biopsy a few weeks later which thankfully came back as ‘normal’ after a grueling 3 week wait for the result.

I am active, have three kids u12 and i’m also a childminder. I went to the GP early this year as I wasn’t feeling myself, not enjoying things and was getting chest pains, fatigue and dizziness at times - I was told I was suffering health anxiety but they would send me for blood tests anyway. I’d never had one before, and was then referred to the haematologist after the results showed high platelet count of 650 before they diagnosed the full CALr Essential Thrombocythaemia ('ET').

It was quite a shock to be handed that little red book, but I tried to cling on to the positives, of which there are many. A lot of the accounts I read on here are from people with much higher counts than mine, and other issues alongside, so I feel a bit of a fraud yet i’m feeling these feelings anyway - almost like my life has been reframed and there is now a before/after. I find social situations really stressful, and just get quite easily overwhelmed a lot of the time and cannot recall the last time i looked forward to something that I would previous have loved, i’ve lost interest in things that would normally interest me or excite me.

I suppose i am looking for reassurance as I feel quite isloated and worried I’ll just feel this muddy headedness/disorientation forever? Did anyone else have these feelings at the start? I’m struggling to separate potential symptoms of Essential Thrombocythaemia ('ET') from depression/anxiety, and it’s consuming me some days to the point where I cannot function properly - but I still have to be a dad, husband and childminder, life goes on!

I feel like that was a bit of a ramble but any answers would be great, thank you for reading.

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Hi, sounds very familiar, I was diagnosed Dec 2025 with Essential Thrombocythaemia ('ET'). I had no symptoms and felt fine, Essential Thrombocythaemia ('ET') was diagnosed after a routine blood test showed platelets of 1300 plus. I started talking hydroxycarbamide 500mg 1per day and January/February I was really physically and mentally down. However not sure how but I’m now on 11 x hydroxycarbamide per week and feeling pretty okay. Definitely lacking some stamina but I can do pretty much anything I need/want to. There are times when brain fog can be a problem but I’ve managed mostly to keep physically active which has helped me a lot.

Everyone is different but I suspect there are common themes we can relate to. I sometimes feel a bit of a fraud for not feeling ill, but maybe I’m fortunate my situation isn’t a whole lot worse. As you say life does go on, I’m sure if you give yourself a bit of time you’ll feel more positive. A diagnosis of Essential Thrombocythaemia ('ET') is a shock and will take time to come to terms with. All the best, Kevin

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Hello @jsc123 I know what you are going through, I will briefly share my experience so far.

The process started on the 18th of February when I lost sight on one eye, an event called amaurosis fugax I almost paid no attention to. I was diagnosed with an Myeloproliferative neoplasms ('MPN') on the 14th of July, which my haematologist thinks it is Polycythaemia vera ('PV') but it can also be Essential Thrombocythaemia ('ET'). I am having a bone marrow biopsy on the 19th coming to confirm this, and my next appointment with him is on the 22nd of September, a whole 7 months! I seem to be forever waiting a few weeks for some sort of results, and this is rather stressful!

I also went away with the red books, one for Essential Thrombocythaemia ('ET') and one for Polycythaemia vera ('PV'); as well as a leaflet about the biopsy, which I read on the journey home. At first I held on to the facts that people live very long lives with these conditions, as long as they are managed, but a few days later I went down big time.

I imagine what it must be like for you, with your young children, work and all the rest. I am glad you came to this forum, as finding it was one of the best things for me. I read a lot of stories here including of people who have been living with MPNs for many, many years! I feel supported, and never alone.

I have a loving husband and young adult children at home, the unspoken situation is, they avoid adding to my worry and I to theirs, so I often open up in the forum. People are so kind, and understand us like no one else would.

I haven’t tried yet, but there is support for people who are struggling to cope, and I would suggest you have a go. It is perfectly understandable to be feeling anxious about it all. In my case, the waiting is what is killing me, so I may contact them soon too, I will let you know how it goes.

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Hi @jsc123

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

I can see you’ve had a couple of lovely responses’ already

Personally - after my diagnosis of Chronic lymphocytic leukaemia ('CLL') in late April 2025, my head was all over the place. Yep, at times I feel a fraud as my condition is under control and I enjoy a great quality of life. I do live with my former nurse wife, so I guess i have a slight advantage although it is a double edged sword as I get away with nothing as she keeps me on the straight an narrow.

And that’s just it, I feel, keeping on the straight and narrow, concentrating on you and what’s best for you. Reach out and see what support there is out there, I’ve found lots of coffee mornings (they usually have cake and that’s always good) and once you begin you find others who have also reached out and they share their experience with you - allowing you a much broader view of the support that is out there.

To begin with I’m guessing after the initial shock we all reach that point where we wonder who to turn to, and I always say that your medical experts are the best people, but beyond that I know you will hear from many people who will give you lots of support and guidance on the forum as I hope I have today.

Please remember you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.

Our phone lines are open:

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

Do feel free to keep in touch

Kind regards

Mike

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I can see that you have had so many replies which I hope has helped you realise you are not alone in how you are feeling.

It’s an emotional roller coaster, especially following diagnosis and you need to give yourself time to come to terms with it.

Try not to beat yourself up for feeling the way you do. My diagnosis of lymphoma caused me huge anxiety. I had 2 children under 12 when I was diagnosed at 41 and it was hard!

We all had different things that helped. For me, it was counselling and I wish I’d started it earlier on in my journey.

Please be kind to yourself. The support line is there if you need it and you now have your forum family as well X

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Thanks so much for your reply and hopefully with time I’ll not think about it quite so much, but can’t see that day yet.

Yeah it is weird trying to process it all - trying to think of how I felt before etc, the symptoms that took me to the GP were largely chest pains, feeling my pulse and light-headedness - all of which were seen as health anxiety as my heart, bp etc were fine after and ECG. I feel no chest pains anymore, but my head is muddy more often than not.

Now I have a diagnoses I was initially quite closed up about, but having gone through ‘the rounds’ of telling people who need to know - it got a bit exhausting repeating the thing I would rather forget and dealing with reactions and change in people’s perception of me.

It’s great to know there is a wealth of experience on here to navigate any questions and issues - a real relief as I’d been feeling quite cut off

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The specialist also said I didnt need anything in terms of treatment, but a low dose aspirin was agreed upon just so I felt I was being proactive, can’t say if it’s had an effect or not!

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Thank you for your reply and glad you have found somewhere to share your concerns, as I have - it’s a great outlet.

My biopsy was scheduled on my birthday in June, a month after diagnisos, and the result was three weeks on again - awful time! However, let me tell you from my experience, the build up to the biposy was far worse than the procedure itself. They gave me gas and air but I reckon I would have been ok without it, the practitioners just chatted on about their car tax issues as I didnt want to know what was going on, they just gave me an indication of how long was left!

Hopefully the outcome will be the best it can be for you

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Thank you. Yes, I have started some ACT CBT this week as I was referred for it, I have suffered with depression in the past and it really helped then - but this seems like depression/anxiety and with good reason or so my wife tells me. I had sertraline back then for a few months but dont really want to go back there but alongside the counselling it may have helped, who knows! I just remember feeling ‘alright’ all of a sudden.

I 'm almost trying to ‘jump’ to the point of feeling lighter but I know it’s a process

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Thanks Mike for sharing your experience. I’m a habitual overthinker and it doesn’t take much to tip me into the negative - I know it will be struggle to stay on the straight and narrow but glad there is somewhere I can come to spout off/take and offer reassurnace.

I suppose I somehow see the person before the diagnosis as someone else, and this is the frustrating bit and quite scary at times. Hopefully at some point, all of this will filed away into a manageable box.

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