Hi everyone, I was diagnosed with CALR positive Essential thrombocythemia (ET) in August last year and since then have been trying to get a handle on my symptoms from both Essential thrombocythemia (ET) and the ME I’ve been diagnosed with since covid. I’m absolutely exhausted all the time, my bones ache almost constantly, I have no sense of balance any more to the point that I use a stick to get about outside as my family got sick of me falling down. I get overwhelmed so easily by sensory things and just concentrating on anything is a real challenge.
I used to be the provider for our house, my wife & my daughter have special needs of their own and I was the carer for both of them and now my daughter comes with me when I want to walk around the block in case I fall down, she also does all the cooking now because a few times I totally forgot what I was doing. Before covid I used to alleviate my bone pain with some intense exercise, I’d ride the bike into the hills or just hit the cross trainer for half an hour and really cane it so I hurt different, but now with everything that has been taken away and I ended up giving away my mountain bike and the cross trainer as them just sitting there was depressing me more than anything.
I guess I’m still learning to find a balance and thought I’d find others who understand how lonely it can be. I’m currently only on aspirin as my platlet numbers are pretty stable (~600). I should say my Myeloproliferative neoplasms (MPN) specialist nurse has been very helpful, when she saw my situation she helped get my referred to the right departments which confirmed the ME/CFS diagnosis, she pointed me towards the Macmillan helper services that fife council offer which helped us get some mobility aides around the house, etc. Other charity services have been less helpful, I was advised to join a haematology group at Maggies so popped in to ask about it the last time I was at the hospital, the advisor was nice at first and asked a bit about my health but when I said I didn’t even realise Essential thrombocythemia (ET) was a cancer at first she said well it’s not then told me I wouldn’t fit in the haematology group and wandered off.
I get that it’s difficult for people to understand what’s happening to me as symptoms from Essential thrombocythemia (ET) & ME can overlap a lot, it’s like I’m getting hit from both sides, I just wish I could find someone to help me find a way to manage all this.
Oh @Sp4rkR4t I really feel for you, it sounds a very lonely, scary place for you.
I wonder if perhaps your GP can help you unpick your symptoms at all
I hope others can help with their experiences.
I find our forum is a safe space for me to be able to say how it really is for me, and I hope you will feel you can keep posting.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Really look after yourselves and be very kind to yourselves
Hey there @Sp4rkR4t, a great big welcome to the forum. Apologies for not responding sooner. I bet you wish you hadn’t needed to look for a place like this! I’m so sorry to read of your diagnoses with Essential thrombocythemia (ET) and ME/CFS and the side effects you live with and their impacts within your family.
While I can only imagine how tricky and life-altering it is to live with ME, I have a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) called Polycythaemia vera (PV). These Myeloproliferative neoplasms (MPN) are definitely blood cancers, unfortunately, and have been classified as such since the early 2000s. Sadly you’re not alone in dealing with incorrect supposed medical professionals like that Maggies advisor—they might like to update their blood cancer knowledge
Perhaps you’d like to read the Blood Cancer UK information on Essential thrombocythemia (ET), I think it’s written and researched really well and helps me explain what I’m living with to loved ones: Essential thrombocythaemia | Blood Cancer UK
Maybe have a look around the forum for others living with Essential thrombocythemia (ET) as there are many Myeloproliferative neoplasms (MPN) survivors here who can empathise with what you’re living with and offer tips. There may even be folks living with ME/CFS as well who might have wisdom to share, perhaps search those terms around the forum too.
In terms of living with cancer-related fatigue (CRF) and yet trying to stay active as someone who used to hike a lot, I wonder if slow yoga might be tolerable for you? I’ve got back into doing yoga in front of the telly since my diagnosis and starting treatments, and let myself fall over and wobble about without a care and still get benefits from all the stretching. Yoga and other types of stretchy, slow exercise like tai chi and Pilates have been shown to improve energy levels in those of us with CRF, rather counterintuitively.
Anyway, I’ve gone on a bit! Do please keep us posted and let us know how you’re getting on.
