I was diagnosed with Essential thrombocythaemia via genetic testing in August last year and since then have been trying to get a handle on my symptoms from both ET and the ME I've been diagnosed with since covid. I'm absolutely exhausted all the time, my bones ache almost constantly now when that only used to be a every other day thing, I have no sense of balance any more, 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 good 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 stuck on the couch. I'm currently only on aspirin as my numbers are pretty stable. I should say my 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.
Hi Sp4rkR4t and welcome across to this corner of the Community……. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Group Title’ and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with ET in it so worth checking.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
