Hi all,
I wonder could I ask you to give me an insight into how you manage to work with the much-discussed fatigue that comes with ET and as a side effect of medication.
I feel under pressure to earn my living, and at 41 have no hope of retiring for quite a while. I find my brain quite 'woolly' some days and my concentration poor but as a scientist I have a busy role and lots of fieldwork and report writing.
Just would love to hear your experiences. . .
K
I have PV and take Hydrea and am so fatigued that I can hardly go to work some days. I've cut back on my hours. When I come home I can't do anything. It is life changing. Try to exercise and eat healthy . good luck
I am the same age as you but very fortunate in that I don't I have to work, although I do have 2 kids, 2 dogs, husband, and big house and garden to look after instead ! However, even if I had to work I would struggle. I would certainly not be able to cope with working full time. I find the fatigue quite debilitating at times, I have to manage stress carefully and also have 'a woolly brain'. I have aspirin and venesections, so no strong medication yet.
Thank you Ruby,
it's reassuring to hear that - although I do feel bad for us.
Just trying to gain some insight into what peoples' capabilities are, in general.
K
Hi, I too have sympathy for you as I know the fatigue feeling. I work with arms and legs that often feel like lead, come home, have a meal, then flop onto the couch until bedtime. Probably then sleep about 9-10 hours and don't feel much better in the morning. I too don't want to give up work as, apart from financial concerns, I think I would vegetate and not use my brain. It is a struggle though. I try to eat healthy, drink plenty of water and eat foods like pasta and nuts (in moderation of course) as they tend to help a bit with energy levels.
Sorry I can't wave a manage wand to help the fatigue go away but like the rest of the wonderful people on the website, it's good to support one another. Kindest regards Aime x😺
I am very "lucky" that I am retired and don't have to cope with the fatigue and lack of concentration at work. Unfortunately I can't offer you any solutions just sympathy.
Best wishes
Lizzie
Would you be able to become self-employed or a freelancer in your line of work?
I am, and I've found it's the only way I can earn enough to live and be flexible on days/weeks when I'm not feeling great (I have PRV)
I'm years off retirement and single so I have to do something to keep a roof over my head and being self-employment is a fantastic option.
While I was employed 4 years ago, I found that the stress of having to take sick leave and then face condemnation from my line manager; with the threat of being sacked made my symptoms worse.
Now I can have a few hours R&R and get back to my work during the early evening or at weekends. My clients' don't know when I work, they just know it's been completed.
I'm a Virtual Assistant/Freelance PA
Karina.x
The fatigue is the awful fact we must deal with ,the fuzzy head ,aches and pains.Sometimes I wonder if I am losing my marbles .I love my work as sculptor,but cannot keep going as I did before P V &Hydrea! Recently have slept so much,have an impending exhibition,so extra stress,another no no.Keep positive,the only hope,but so hard.Keep well everyone.
It is very difficult, I understand what you are going through as I worked as a Midwife in an extremely busy maternity hospital and some days putting one foot in front of another was a struggle.
From experience I would suggest;
Stay well hydrated and have regular meals and some healthy snacks. That really knocked me about at work, missing meals, blood sugar all over the place and getting dehydrated rushing round for hours in the heat.
Have enough sleep, getting sleep deprived makes everything so much worse.
Have regular holidays, long weekends and short breaks to avoid getting too worn out.
Regular exercise to build up your strength and fitness.
Keep your weight within healthy limits, so you feel positive about your body.
Learn to pace yourself, balance work and rest.
Learn to manage stress, it saps your energy.
Build up your faith, prayer life, that spiritual core that gives you strength and peace to carry on through difficult times, that is your lifeline.
I think a lot of people with ET have to retire early or stop working before retirement age. You are young enough to plan you pension with this in mind. I managed to work to 56, though it was a struggle.
Very best wishes,
Borage
Could your boss consider you working from home so you could stop and rest when you are tired? Worth looking into or freelancing. There is no way I could return back to work, I would be so
Lumped over my desk and my appearance would frighten people as i have the palor of Mortician from the Adams family lol
With PV at 65 and still working I find that wen I am focussed on the task in hand, be it office based, on the road or working on machinery, I don't suffer from tiredness. The fatigue only takes over when I get bored or sit down and relax. My nightmare is a day with nothing to positive do - by bedtime I'm aching all over and exhausted.
I usually also take a 30min 'power nap' after lunch most days.
Fortunately running my own business I can 'go with the flow' and work as and when I feel like it - may be different if I had an employer.
I don't envisage giving up working until I am no longer able to cope but I always feel better after a productive day.
When I was diagnosed with Et at age 44 I had four boys under the age of 10 and a part time job teaching mobility to visually impaired children (I.e. on my feet most of the time!). Quite frankly I didn't have time to be tired! A lot is being talked about exercise being useful in combatting fatigue and maybe that was what was helping me keep going. I guess I had no other option but to keep going in those days but I am retired now and progressed to MF and find the fatigue quite debilitating. I try to walk every day and am in the process of splitting my walk into two shorter sessions as I find the longer walk very tiring. I now am unable to clean a room without several breaks sitting down but I push myself to be as active as possible. The weather is not helping outdoor exercise much at the moment but I still try not to sit for long periods. I hope you find a way to help your own fatigue and maybe exercise might help. Slowly at first and then build up. It's free and if it works - great!
Take care everone
I was diagnosed with E.T. when I was 54.
I managed to carry on working for a year before giving up. I worked as a teaching assistant with 10-11 year olds but couldn't give the support the children needed as in that kind of job, you can't just have a break when you need it, you have to carry on regardless how you feel.
Best thing I did was to give up work but did miss the money though, but I was in the fortunate position that it wasn't absolutely necessary for me to work. I was a kept woman for several years (by my husband!) until I received my pension.
There is no way that I could do my job now (am 65) so I do appreciate what a difficult position younger people with MPN'S are in.
The fatigue I suffer from, started before I was diagnosed and I have put that down to the illness not the meds, although I do feel extra tired physically when my blood cells have a dip or my platelets are extra high.
We are all so different with our experiences of side effects of the meds or symptoms of this disease and also with the way we deal with them.
Lots of hydration, exercise and fresh fruit and veg do help me.
I'm 59 and know what you say about the tiredness but still need to work and as people have said when I'm busy I seem to cope better, the company I work for have been very good and if I really can't manage they understand and don't make me feel as though I should make more effort as they can see oat I have tried to do everything - thinking of cutting down to a 4 day week and they are agreeable with this. I find it very important to have meals at regular times and stay hydrated. I have JAK2+ ET and then to complicate matters alos the MDS Siderblastic Anemia currently on Aspirin and Anagrelide as Hydroxy was not working well for me.
Caz x
How are you doing on Anagrylide? How long were you on HU and what dose and how were your platelets. Curious because HU I really do not like at all. And does not seem to be working and I really do not want to increase my dose, have to work full time and take care of my mom!
Hi Mickey64 I started on HU 1x500 per day with Aspirin in April 2015 and as first this seemed to work and my platlets dropped within in range - I have the additional problem of having an MDS in the way of Sideroblastic Anemia - the HU was unfortunately also hitting my HG and I have had several blood transfusions. In December when I saw my specialist my platelets were on the rise and an increase in HU not vialble as HG down at 66. I was gradually changed over to the Anagrelide and dropped the HU after two weeks on it, had 4 units of red cells before Christmas. saw my specialist yesterday and HG at 100 - this is really good for me - and platlets back down to 352. Take 3 x 500 of Anagrelide a day spread over the day and after 4 weeks am not having any ore side effects and perhaps have a little more energy. I still work full time.
Sorry this is a bit long but you need to have all the info as I am not just JAK2+ ET.
Cheers
Caz x
I don't know if you can try any of these: I now take my meds at night and not in the morning; I eat smaller amounts and so eat more often; I try to walk when I'm tired - 15/20 mins after starting I begin to feel better; I eat very little processed foods. I am certainly less tired than I used to be.
I hope this helps .....
Hi Karol, thank you, its been so interesting reading the responses to your post. I have PV, Im 42 with 2 young children and am a self employed leadership development consultant. My job means im out and about alot and up on my feet during the day. Its very stimulating and engaging so i seem to be able to stay focused until its time to flop. I dont know how i would cope if i was employed doing the same thing. I would need to do loads more desk work, which wouldnt stimulate me at all. A few weeks ago i was asked to do a piece of work that meant I was sat down at a desk for a few days, i found it very difficult. I felt so different to when im stimulated and engaged and active. So thats they key for me. I try to walk outdoors every day for at least a total of 40 mins. Lots of fresh fruit and veg (snacking on veg all the time), no caffine, no alcohol on a school night, less meat, less dairy, lots of water and disciplined about sleep. Your job sounds interesting and demanding Karol, i hope you find a way to work with it that works for you. Jo x
I have ET and have been on Hydroxurea for over two months, 1x500 a day. My platelets have only gone down to 610 were at their hightest 810 but I have sooo many side effects from the medicine just at this low dose and my legs feel like total jelly all the time. I work full time and had no problem before I started HU and my platelets were high all year, was just diag in Sept only because I questioned the lab work when I saw it. Dr wants to increase the dose but to tell you the truth I don't think I could take anymore side effects. I'm not to happy with my local Hemo Dr. I saw an MPN expert for a consult and he did not want me on medicine at all, but my local Hemo Dr disagrees with the expert (most of the experts disagree with this one expert on the medicine also he just does not like HU) My local Dr keeps telling me I could have a stroke if I don't increase. I asked for other medicine, he says angrylide is harsher and interferon is even worse and jakifi is not approve for ET, then just says see you in six weeks. Think I should hunt for someone else? I too have to work full time and I am finding it difficult.
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