Feeling awful today

Yesterday was so good - I felt full of energy - cleared out my cupboards, went clothes shopping, sorted out my oil paints - i felt the Hydroxy must be doing me good. And today I have woken up with the same old fatigue and shakiness - too exhausted to move. How I hate this.illness. Nobody needs to reply to this - I just needed to have a moan!

37 Replies

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  • Have a great big E-hug 😙😙😙😙

    Hope you feel better this afternoon

    Lainy x

  • How nice of you to reply- I have now dragged myself out of bed,showered, put on my makeup and have every intention of trying to meet a friend for lunch - who will no doubt tell me how well I look! Still feeling dreadful though x

  • That's the spirt. MNP will not beat us, says me sitting looking at my first hydroxy for the last two and a half hours trying to summon the courage to take it 😔

  • I take mine at night while watching News at Ten - the TV distracts me from the thought of the chemo ........

  • First chemo tablet taken 4 hrs ago. Now go to work little tablet on my odd blood.

    Best wishes lainy 🤗

  • You've taken the first step - from now on it'll be easy - hopefully no side effects - i haven't noticed too many - vertigo in the early days, dry skin - and a new one - hot feet - which may have no connection to the HU- good luck- Skipperl

  • Lainy, I've been taking Hydroxy since February with no apparent side-effects, but I do take it with my evening meal (tried to take it before going to bed but kept forgetting!!) View it as just another tablet, it certainly doesn't look any different.

  • Thanks chrisannsen, I took it a few hours ago now so it's going to work on my funny blood. Only thing I feel is strange sensation on roof of my mouth and back of throat. Ive drinking abt 3L today

    Best wishes lainy 🤗

  • I know EXACTLY how you feel! I have dragged myself out of bed and am meeting some friends for coffee this morning who will no doubt tell me how well I am looking (I have had to give up work so spend more time in the garden now) and I am sure that everyone thinks I am putting on an act to get sympathy... Very frustrating as most days I am too exhausted to get out of bed.

    I'm thinking of having a T shirt printed - any ideas?

    Hope you feel better soon. What dose of Hydroxy are you on?


  • Hi Rosemary - I am on what my consultant calls a 'baby dose' at the moment - I had a month of taking 500mg every other day, changed to 500mg every day two weeks ago. I agree how irritating it is to be told how well I look - now I just smile and say thank you. Have a good day in the garden - don't overdo it - we obviously must conserve our flagging energy stores.

  • Keep going you will adjust and find a balance in dealing with your MPN and the treatment. Fatigue can be part and parcel but you get used to the days you just have to go easier (I am having one of those today like you yesterday I was full of life!!) and the things that can help too - not always but often when the fatigue hits bizarrely it's a bit of exercise, maybe a walk in the fresh air that actually kick starts you - I have been diagnosed with ET for ten years and been on HU for that time too and didn't believe it when I was first told that re exercise !!! - but it's so true the times I get up so so exhausted unable to face a day of anything but get the shoes on dog on lead and we plod round the park and by the time I am home feel very different - it kick starts our blood circulation and really helps - bar some times when it is a case of just needing rest - you will get to know those different times. Also loads of sips of water all the time helps so much. Remember with HU it takes time for the body to adjust to it and it does balance out in time - and it is helping you out in the meantime keeping you safe - even tho I know it doesn't always feel like that 😀😀 All the best

  • Thanks for your encouragement ..... I feel a bit better now after a lunch and a gossip with my friend - I even managed a stampede round Waitrose for some groceries! Now for a doze on the sofa - if it stops raining tomorrow I will heed your advice and go for a walk....

  • Lainy- I hope you've plucked up the courage to take your Hydroxy- I put off taking it for ages until my consultant put his foot down and promised me it would help - Skipperl

  • Thanks skipper, second tablet gone. Third tomorrow. Think I've shocked my poor bladder with all the water I've drank in two days 🤔

    Feeling ok

    Best wishes lainy 🤗

  • I know everyone says take loads of water - but I keep having to trot to the loo every night so many times it's disturbing my sleep - which doesn't help how I feel the next day. Don't go overboard with the water!

  • Hi skipperL. I call these days my 'knackered days'. when the fatigue and brain fog are rediculous!

    Two days ago I felt great and we travelled from Chichester to Newcastle on trains, planes and automobiles. Yesterday, you've guessed, I had a knackered day! Today I feel great again so I just have to accept it and get on with my life.

    Relax today and you'll be fine tomorrow 😀

    Lesley x

  • Thanks Lesley - I am feeling much better today - I think on good days I shall have to try not to overdo it

  • If you're anything like me that will never happen 🤣 If I feel good I just go for it!

    Today I have hairdresser, coffee with daughter then cocktails with her and Indian curry for husbands birthday!

    L x

  • Enjoy! however I am now going to pace myself before a busy weekend - I don't know if you can store energy up for later use - perhaps???

  • Hey

    Have a moan, ive been doing plenty just lately.

    On fatigue at a support group meeting last year we had a lady come and do a talk on managing fatigue and she said something i found interesting.

    She said when we feel 'well' we have a tendancy to do more, this is human. But she said think of your energy levels as like circles, so circles within a circle (like a target board i guess), so the middle circle is feeling shattered, the next circle you feel better, the next better still and the outermost circle being you feeling fantastic.

    She said when we have the 'outercircle' feel we tend to also use our energy to that level. But what we should do is think ok i feel great but i will use energy levels as though im in one of the lesser circles, so not to exhaust the energy.

    Dont know if im making sense how im describing it, it made sense to me at the time though.

    Hope you feel better


  • Sounds interesting - I shall think about the theory - in the meantime thanks Paul for your comments - I am feeling better today so far

  • Makes sense to me. Aime xx exactly what I do!xx😕🙁

  • Hi Aime - we're all the same - but every day is different!

  • I know, I've decided to stop looking for patterns that my PV follows as I don't think there are any! Kind regards Aime xx

  • How are you doing Aimee? Xx

  • I'm not bad thank you. How are you? My work has agreed (so far) to let me retire early through ill health so I feel a bit less stressed and pressured into keeping up with my colleague at work. Feeling yuk this week as picked up some kind of virus but hopefully the worst is over. Take care, kind regards Aime x😺😺

  • Wish you better Aime- Skipper

  • Thank you. Xx Aime

  • Hi..good 're work. Hope that all works out. I saw more specialist OH person this week. Difficult but good in that she is telling them I have to limit my hours to contracted 7hrs/day. I'm in Canada for friends retirement dinner which bit mad but thought I'm going and will deal with the tiredness!! Take care xxx

  • CWayman - carry on doing as much as you can - I feel I should take my own advice!

  • Quite right enjoy!! Aime xx😺😺

  • Hi Skipper. Yep know exactly that feeling. About 4 days ago I thought to myself, wow I feel quite normal today ..so started doing those jobs that had been waiting, ie. clutter clearing, odd bit of painting etc. Really pleased with myself ( pathetic isn't it ) I don't overdo it cos I know the consequences , then boom yesterday I was back into the exhausted mode, friends came round for a games afternoon ( we really know how to have fun here in Devon) . No matter how much makeup I put on I still looked pale and tired, felt just how I looked, we had fun and giggles etc. But I was a wet rag. I know I am rambling but just wanted to illustrate how strange this condition is . I am REALLY not moaning , as I consider I am very lucky and fortunate in my life. But it's weird how we go up and down with our energy levels. Hey, enjoy the up days and just cope with the low days.

    Luv to all. Sandy.

  • Today was an up day - but I think I've overdone it! After such a ghastly day yesterday I was over excited to feel well- I have done lots of things running about like a teenager - but now I'm home I've flaked out on the sofa! Must learn to pace myself ......

  • Sending hugs x

  • I've been in bed all day today, only managed to drag myself out to drop my girls at school then back to sleep, I have been running about a lot this week (as I always do!) it just catches up with me and my body shouts oh no you don't!

  • I feel so sorry for anyone with family who has to cope with these horrible symptoms and look after them - at least my children and grandchildren are grown up - I wouldn't have been able to do school collections and babysit etc feeling as I do these days - try and keep your spirits up

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    Skipper and everyone who has shared, thank you. I am sooooo tired at the

    moment. This morning I felt a bit better and did a part of my light morning

    excercise regime. I'm muzzy headed, weak, and a bit fed up with it. I do wonder

    about my level of anaemia and think I need to address this in another post as

    my nails are a shocking mess and there are other symptoms. I see haemo in a few

    weeks and gp has done tests that hospital doesn't do. I haven't felt this bad

    in a while. I can see from the posts the changes in energy levels are common

    for a lot of us.

    Onward and upward. Have a good weekend everyone.


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