I always make myself go gym before work but, this last week I have struggled to go at all. This morning I dont even have the energy to get a shower, I finally did have one. Im currently sat with a towel on my head, wanting to curl up in bed and not go work.
I'm not sure if I'm being lazy, it's the weather or my ET does everyone feel the same?
Hi Avamia94, yes can identify with that horrible fatigue. I’ve got PV and get spells that I’m not fit to do much. My arms and legs are like lead and I can actually feel nauseous, I’m so fatigued.
I usually find I have to give in and rest - at this stage I can’t push through it and exercise, like I can at other times. Plenty of water, a carbonated drink (I don’t know why it helps and I know it’s not the best for you), pasta, nuts, bananas, other fruit, etc help a little with energy levels. You are not alone. Kindest regards Aime xx😻😻 hope you feel better soon.
With Aime all the way....I am like a rag doll at the moment,you are not alone ,the only answer is to rest...hope you soon pick up.Gorgeous weather here,cooler at last ,so I should feel better ,but I don't. It's just the disease,we have to try to go with it not fight it too much..I have sat in bathroom,trying to find energy to shower,or to moisturise after a cool shower,know exactly how you feel...Best Wishes
At least im not alone. I will try rest got loads on at work, they don't understand it so that does help.
you are most certainly not being lazy, it's awful when the fatigue strikes, we all feel for you. Maz x
Same!! Who has time for fatigue.. but it’s real and really annoying!
You are not alone, Avamia94 -- not at all. Last week I felt just like you describe. Breathing was an effort, and exercise far, far beyond me. Then, over the weekend, my energy started to come back and today I'm doing okay. On the worst days, I just give up and rest and wait for it to pass. There doesn't seem to be anything else to do, and it does help.
In a word, yes.
I find fatiuge the most frustrating symptom of this (ET triple neg) as I have always Been busy and full of energy. Now I take naps after work (quite enjoy that).
I do agree that good healthy food and, in particular, enough fluids can make a huge difference day to day.
However, when that sporadic, unannounced and severe fatigue hits me, I just have to stop and rest. The good thing is that, for me, that does pass and, though I’m not as energetic as I was, I can get on with life.
Hope you feel better soon x
I totally sympathise, I have days of high energy and can conquer the world and days of below zero, where my limbs feel like lead! I am trying to focus my energy on the good things, rather than just work. I will now listen to my body and try to rest when I am tired, not always easy, but I do need to learn a bit of life balance. Take care x
Oh yes! It’s only in the last month since the HU has kicked, my counts have tumbled and I seem to have recovered some of my lost mojo that I realise how completely rubbish I felt over the past five or six years.
No matter whether I woke up buzzing with ideas about my day by the time I was half way through my shower a heavy blanket of exhaustion and despondency would descend. And all I wanted to do was go back to bed and under the duvet. It was a mental thing as much as a physical thing. I thought I was going nuts. Laziness? Depression? The weather?
Hang on in there. Be kind to yourself. And also, if you haven’t already then get your iron levels checked. Am convinced that low iron makes a significant difference to energy levels and general outlook. Wishing you well.
Was just about to post the same thing!!
I suffered last winter but since then I have a new routine in place and take high strength Vit B12 and green tea first thing which has worked wonders all summer! The last few days have been very chilly and dark and I’ve been seriously dragging my heels, energy and motivation zapped!
I honestly think the seasons have a lot to do with it, back to falling asleep early evening too which is a pain as it’s term time again and I’m back to hitting the books, so need my stamina back in the evenings.
Anyone any other tips for surviving the winter energy blues?
Kerry 💤
I do experience the odd bout of ‘fatigue’, and it’s definitely not to be confused with ‘tiredness.’ I can only describe it as a feeling like you’re coming down with something, such as the flu. You really don’t have the energy mentally and physically, all very strange!
So, no you’re not lazy, it seems to be part and parcel of our disorder, as conveyed by others here too.
Mary x
Hi Aviamia94,
Not a lot I can add to what has been already said fatigue is the biggie with most of us MPN'rs not a lot to be done but try to ride it out. Ihave noticed in the last couple of months that my fatigue has gotten much worse and some days am struggling badly all we can do is to take one day at a time.
Garry
Hi
I can so relate to sitting with the towel on your head. I have PV and at the moment energy levels not too bad. It is difficult when you are working and very important that provision is made for your condition at work, understanding that there will be days when you are below par. Being open and making the right people at work aware, perhaps HR or your line manager is necessary. You are not being lazy. You mentioned that you "make" yourself go to the gym. We are all different and I know that pushing myself does not work for me. I also find that protein, maybe a boiled egg for breakfast has helped me. I hope you can crawl out of the woolly treacle soon and allow time to give in and rest when needed. xxx
Yes, that is exactly how I have been for months but seem to be coming out of it now. I still need to organise my gym visits (I was a very active gym visitor prior to the medication) but I am putting my recent 'lift' down to beginning to use a sublingual B complex. It has helped my fatigue and concentration. I am not getting the same mind fog as I was and hope it will continue.
What medication are you on?
All the best Penelope
I m on clopidogrel. At the end of the week it will be two weeks no gym which annoyed me, because when i do go its hard but finishing having a shower then going work helped me in work. I get on with my day not getting the feeling im having now.
My line manager is great she said i could have this morning off. I thought great I can go gym. But it feels like my legs are stuck to the bed telling me to just rest so thats what Im going to do this morning.
Thank you all for your advice
I really hope you soon feel better. Today I am having a complete day off. I had intended to drive into work and I haven't even done my usual dog walk. It seems to happen on the day before my next Pegasys.
I hurt all over. Head and neck ache worse than usual and energy has left my entire home!!!!! These days happen and there is nothing else to do but take it easy and allow recovery.
I must tell you, I have only just reached this stage, when I'm able to recognise the fact and not feel absolutely bone- idle. We are not. We are dealing with a rare disease. It's infuriating and frustrating at times but those emotions don't help when your brain (the boss) is telling you to STOP! x
Feeling exhausted certainly doesn’t make you lazy. Cut yourself some slack - rest & restore yourself . You’ll really benefit from listening to your body & not trying to over ride its need to rest up once in a while . 👍😊
I could have written your post today, utterly exhausted and know exactly how you feel. I have avoided the hydrea, but I am about to give in, to see if I can recover some energy. The fatigue can make your life very small. I am challenged with working full time, it takes its toll!
So glad we have this group to share with people who get it. Hang in there eat good food, and rest, rest, rest.
Take good care!
Are you sure the gym is good for your age and physiology? Maybe there is too much "I should" in your life and in everybody's life. Sometimes it helps to ask your non-MPN friends and colleagues how they are feeling. It could be the weather or some other influence outside of yourself that is making you feel tired. I did not feel well last summer and I put it down to air pollution. I even told so to the haematology nurse at Guy's and my GP who sent me for blood tests and ECG. The blood test was for hemantics and also a 75g glucose tolerance test which I never heard of before and the results are not back yet.
I am a morning person, get everything done in the morning but after 6pm I don't get much done at all and this has been happening since last summer.
I'm 24 years old, they all said i was lazy thats why i commented on here to check. I had a load of blood test at guys but my gp havent got them back yet.
Does anyone else have trouble with replying to posts?
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