Living with fatigue

Hi, I'm editing the next issue of MPD Voice and plan to cover living with fatigue, as I know this is one of the most common quality of life challenges. If you would like to have some of your comments included please post them and I'll select some that illustrate the problems and will also be including current tips from Professor Ruben Mesa.

Thanks

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  • Hello,

    Mr Fatigue has cometh! I became ill 2007 and before that, I only needed to sleep around 7 hours per night. Everyone I knew, fell asleep in front of the television etcetera, Never me.

    People became tired when driving a car ...I was just excited and was fresher after the drive than if I hadn't. Now, 2007 the story changed. I was working as a remedial Massage Therapist but I had to stop that. It isn't very kind to ask the patient to move down from the table, so I, the therapist could have a lie down.

    The tiredness is also slightly different I think, as I suddenly, and I mean suddenly within a few minutes, become so tired I cannot keep my eyes open. I am now a dental nurse and work in surgery only two days per week (I do managerial paperwork the rest...). Doesn't matter if I make sure that I have a very good long nights sleep the might before or not, I can still have that very moment when I have to move or I will fall asleep, no matter what.

    Went to a conference a week ago, I slept in the car (2.5 hours drive but I didn't drive if you thought that...;-)), slept at the conference!, and in the car on my way home. I just could not stay awake as I couldn't move around, or be fidgeting as I would call it.

    I feel like a zombie sometimes.

    In all this misery, I have discovered, that Mrs Sun is on my side! I don't suffer from SAD, but I become so much more alert when the sun is out. Maybe because I don't sit still then? I try to go to sunnier climate, as often as I possibly can, as I cannot accuse Great Britain of supplying me with sunshine this summer!

    So, for me, it is a total change. From always alert to just waiting for the Sleep-alarm to ring!

    The only little help is to be where the sun is.

    Could have written a lot of examples here, of funny stories when I went into sleep mode at the wrong time and place, but..I guess that is for my memoires!

  • Like Swede I suddenly feel tired - seem to manage about 4/5 hours of activity at most, often less, and then just suddenly come to full-stop. I find nothing much works other than getting into bed or a sit down plus coffee followed by a walk. Rest by itself does nothing.

    Certainly feel less tired in a hot climate.

  • Yes, this tiredness that I have been feeling even before I was diagnosed with ET Nov. 2011. It is a feeling of exhaustion for most of the time even after a small effort or completed task or some kind of job, such like dusting, clearing up the table after dinner for one or two people, etc. This was not me before this health situation. I was very energetic and on the go through the day and never feeling tired. Also I have noticed that sunny hot climate makes difference and that I fell less tired.

  • Hi,Having suffered from fatigue for many years I believe that I can tell the difference between being tired (which affects everyone) and being fatigued. Personally I need 9-10 hours sleep a night which I do not always get! And just getting up in the morning can be difficult. I referee youth and adult football at weekends which means I get much needed exercise. During games and for a while afterwards I feel great,but when the fatigue hits I feel so weak and shake. Sometimes its so bad I cannot hold a drink or read a newspaper! The medication side effects also seem to be worse when fatigued. I love fishing especially sea fishing but have had to give up all the early starts as I can no-longer handle the tiredness and fatigue combined. I feel I have control of my condition most of the time and have learnt to live with it and generally know my limitations,Instead of getting upset at what I can't do (which I used to do and needed a course of CBT to deal with it.) I thoroughly enjoy what I can do.

  • i get really tired i sleep 8-9 hours during the night but by 215 i have to go to my bed for two hours or if i dont if i am lying on my bed about 6 i would fall asleep with the computer on my lap am afraid of it falling of my lap and breaking i think it is just part and parcel of et but it is still hard too handle

  • After the third venesection for pv my fatigue has improved a little but no doubt will soon return at full force as previously! At the moment I can last out until about 2.30 in the afternoon, then there is no energy left and feel like a rag doll! I can sleep 10 hours per night no problem, fall asleep when I come home from work for 2 hours and still feel fatigued - not just tired! I would welcome any more information or tips on how to deal with this. I try to go out for a 20-40 minute walk twice a day if possible.

  • Thanks to all contributors tho this question. I will try to incorporate these into the next newsletter for MPD Life and will post a link when it's published. I also suffer with fatigue and felt like a woman of 90 on Saturday butI forced myself to go for a walk, aches and tiredness and all :-( Although it as very cold and very hard I did and do feel so much better so my new personal strategy is to get back to some sort of regular exercise. Watch this space :-)

  • Hi, I am newly diagnosed myelofibrosis patient (although apparently I've had it for years!) and a fresh member of MPD Voice. Tiredness and apathy is a big issue for me (with a little bit of depression creeping in as well, I think). I have been looking for ways to cope with it and find that exercise sometimes helps. I do it on my own but the problem is kick starting the process. Getting off the sofa seems impossible at times and afternoons/evenings are just a total zombie zone. I have tried to get a Yoga teacher to help me out with some exercises and meditation so that I could get as much as possible out of it instead of hit-and-miss DIY sessions, but as soon as I tell them my condition, they don't want to know. I wonder if we could somehow compile a register of willing Yoga/pilates/meditation practitioners, who would be willing to work with MPD patients. Perhaps we could get in touch with the Wheel of Yoga and see if they could help, then post links and contacts on this site. A specialised local class would be a great solution, I think. Perhaps such solution already exists, and if so, let me know because I've completely missed it!

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