Hello there Aaron @Timmins26, welcome to the forum. I’m so sorry to read of what brought you here but am very glad you found us.
Sounds like you’ve received a bit of double-whammy diagnosis there! Am I right in thinking that you were diagnosed with both Monoclonal gammopathy of undetermined significance ('MGUS') and Essential Thrombocythaemia ('ET')? I’ll share the great information from Blood Cancer UK about Monoclonal gammopathy of undetermined significance ('MGUS'): What is MGUS | Blood Cancer UK and Essential Thrombocythaemia ('ET'): Essential thrombocythaemia | Blood Cancer UK
You’re not alone on the forum in being diagnosed with 2 different types of blood disorder, but as we forum members can’t offer medical advice I’d suggest asking your specialist about anything of note to look out for with both Monoclonal gammopathy of undetermined significance ('MGUS') and Essential Thrombocythaemia ('ET'). Perhaps any symptoms that might be worsened due to the double diagnosis, is Monoclonal gammopathy of undetermined significance ('MGUS') linked to any other potential illnesses, what about Essential Thrombocythaemia ('ET')? Stuff like that.
If I might share my experience of living with Polycythaemia vera ('PV'), which you likely know is closely related to Essential Thrombocythaemia ('ET') and shares many symptoms and treatments, I also found it massively fatiguing. Actually pretty disabling. I experienced pretty horrible brain fog too and know that exhaustion you speak of. Fatigue is unfortunately really common with Myeloproliferative neoplasms ('MPN') and blood cancer generally: Fatigue | Blood Cancer UK and Tiredness (fatigue) and cancer | Macmillan Cancer Support
For me after diagnosis doing some slow movement like yoga really gave me energy boosts, although it seemed so counterintuitive. With time I got back more energy and focus, and having thinner blood from taking daily aspirin and hydroxyurea helped too.
My haematologist tells me to always report new or changing symptoms, and I’d probably want to check out that headache you described. Sounds horrible. Have you called NHS 111 to check it over? If you do, make sure they understand you live with Essential Thrombocythaemia ('ET') and have a high clotting risk.
I was thinking of your responsibilities, this diagnosis, and the ADHD, and would say try to give yourself a break right now. I know it’s hard to slow down but now is the time to learn how your energy levels change, whether yoga or similar helps, and to seek support from loved ones. It’s hard to describe these sort of invisible, chronic illnesses to others, but I think starting with just how fatigued you are might release a bit of pressure.
When I’m feeling like my diagnosis is taking over my thinking and spoiling my focus I choose to give it say 30 minutes of my time and read on blood cancer organisations like Blood Cancer UK (no Dr Google or AI!) about whatever the worry is, and then I feel more able to move onto the next thing. Writing notes about my queries/worries helps too as I can then ask those of my haematologist at appointments. If you can email your haematologist in between appointments then that’s great, not everyone can.
If you’d like to find others around the forum who live with Monoclonal gammopathy of undetermined significance ('MGUS') or Essential Thrombocythaemia ('ET') then simply use the search box at the top. There are lots of threads with lovely forum members who share how it is for them, like this one: ET diagnosis finally sinking in and here: MGUS and fatigue
Don’t know if you like using apps to keep note of stuff but there’s this one from MPNVoice where we can track of our typical Myeloproliferative neoplasms ('MPN') symptoms: MPN | Sanius Health
Hope that helps a little @Timmins26, do let us know about that headache and how you get on.