Good to hear worries expressed by others

Hello I was diagnosed with ET + jak 2 18 months ago, I'm 67 and take hydroxy and an aspirin daily. I'm on holiday in the Canaries at the moment but wanted to follow on from a post and replies I've just read. I feel blessed to have had so few side effects from the drug and generally speaking lead a fairly normal life. Reading the recent post though reassured me as I realised reading others experience that what I feel sometimes is quite normal. I'm learning as time goes on that I'm not as I used to be. For instance we had a 12 hour journey here which took me so long to get over, I felt terribly tired. I kept myself hydrated but I was shattered for days. I also had a massage on my 4 day which left me feeling worse, the therapist explained this can happen sometimes as it would have shifted the hydroxy around my body making me feel unwell, I've never had that happen before. Some days the heat and any form of exertion gets to me. These are all new experiences. I try to keep going and up with others, eating and drinking a small amount of alcohol but I don't find it easy and socialising can be more of a bit deal. As others have commented it's difficult to know what is age related or due to the complaint. I'm determined to keep as active as possible and keep doing what I want but I find it hard to understand the way my energy fluctuates, sometimes from one day to another when I haven't necessarily done anything different. It's so helpful to hear others go through the same. I was heartened to see someone had posted they are in Oz, that's a journey I'm not sure how I would cope with.

7 Replies

  • Hi Linda, these MPNs are definitely a learning curve for us all, and it is difficult to understand why energy levels fluctuate, there is no rhyme or reason to it all. Enjoy your holiday. Maz

  • Hi Linda, it seems we are all different but suffer similar things. I find the fatigue very frustrating but have learned to do the things I want to do in the morning and early afternoon, meet friends for lunch instead of dinner, then slow down in the afternoon and I'm afraid I have to give up and go to bed early evening. But I've stopped worrying and just live the way that works for me. I hope things settle down for you so you can enjoy your holiday, I expect the journey really took it out of you. Best wishes, Frances.

  • Hi Linda. As Max says there seems to be no rhyme or reason and my energy levels can fluctuate from hour to hour - or even minute by minute. I liken it to an athlete hitting the wall. I am not athletic in the least 😂but it feels like an excellent description of my fatigue at times!

    Best wishes, Jan

  • From one Linda to another - I understand completely about the tiredness, I have MF and am 69. Travel by plane knocks me for six so am looking forward to a cruise to Noway in a weeks time (we did the Canaries in January). I am not sure that massage is a good thing for us MPN'rs to have but someone may elaborate on that one. I went to have one on a cruise we did last year and when the therapist heard I had a blood condition she would not do it under any circumstance. Anyway, keep your chin up and know that we are in this together. On the good days do everything and on the slow ones, give in and just rest.

    Best wishes.

  • How very true ,all of you.....! Best to you all,laid here like a 'shilling dinner',I heard someone say once,did too much today and now paying for it.!Sometimes not easy when you feel OK to just stop before the brick wall instead of crashing in to it!

  • Hi. I find this hard too. I had a week off this week and really tried to pace myself. It was the housework that knocked me out !! I checked my fitbit in the evening and had nearly done 10k steps without walking out of my front door! But I ached from top to toe and I still felt exhausted the next day... still like everyone says I try to take the energy when I have it 😁

  • I'm so glad to read all of these! I have PV, JAK2+, on HU and aspirin. I've seen my primary doc and my hemo within the last 6 weeks-told them both how fatigued I feel. It seems no one cares! They just give me various excuses and make me feel like a cry baby. Some days I drop by 3:30, other days I can make it longer. When I push myself to keep going all day, I pay for it for 5 days. My hemo said, "Well, why wouldn't you be tired?" Because I shouldn't be so physically exhausted and sore from sitting at a table! I'm sure glad I have all of you who understand!

    Best wished to all!

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