Just like you I am a newly diagnosed CML patient, it got picked up in November 2020 whilst I was in hospital with Covid 19. Prior to diagnosis I had been experiencing a lot of pain in my hips when I walked some distance, lots of night sweats, my spleen had enlarged and I began losing a lot of weight, around a stone and a half in total most of which dropped off me when I had Covid.
At first I was in utter shock and total disbelief that I had been given this news as, like you, I had led a very healthy and well life up to that point. I teach yoga for a living so well understand the importance of looking after yourself, both in body and mind, so why me? What had I done to deserve this?
As you will read on here, it is not a condition you choose and as leukaemias go we got the 'good' one, the one that is treatable with medication and lets you get on with life! Yes, there can be side effects and we are all different, but you have to try and be as positive as possible (easier said then done) otherwise it will take you to a place you do not want to be. It's ok to feel what you are feeling, there is a lot to process at first, but you will work through it, just give yourself time.
I am still only 7 months into treatment but here's what I have learnt so far:
Initial hair thinning was devastating, I cried most days fearing it would all come out and that I would have to live the rest of my life without it. Eventually, through trial and error, I found using Alpecin caffine shampoo worked for me, and not to stress my hair out too much with over washing, brushing and towelling. I now have zero hair loss on a daily basis.
I am on Imatinib 400mg which has given me a few challenges! Intermittent nausea approx. 2 hours after taking the dose has been combated by having a couple of squares of dark chocolate when I feel sick, this works, don't know why but it works for me.
Swollen eyes, another joy! Somedays they swell, some days they don't. If I drink plenty of water they are better. I also use cold compresses, a rose quartz roller which is cooling around the eyes and occasionally an eye roll on, again its cooling.
Aching ankle joints which seem worse if I do a lot of walking. I take magnesium supplements 300mg and massage magnesium oil into them which helps massively when they are very achey. This is also eased with lots of stretching and strengthening via yoga.
Supplementation, there's a lot of info on here about this. I take Vit D/C/K2 selenium and magnesium which all help.
Exercise! I would say this anyway given my job but its not only a way to keep your body strong and healthy but its a great head clearer too, just as important as the physical stuff.
Finally, do I look and feel normal again - no.
Do I cry when i am reminded that I have this - yes.
Am I angry this came my way - yes I bloody am, but these are all normal feelings and you just have to find a way to navigate it all. Surround yourself with good people, those who love and care about you, they will help enormously, and reach out if you need help, good days and bad days.