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First time post

Hello, this is my first time reading a forum. I am 31yr old with ET with a cal-retic mutation. Was diagnosed last year. Started Hydrea in October, recently increased to 1000mg daily since my last plt count was 1.5. I am so relieved to read that I'm not alone in the fatigue dept. I am a nurse an after a 12 hr shift I can barely have the energy to shower and change. I am also on aspirin BID. I am hoping my numbers will come down with the increase and I won't feel so exhausted all the time.

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Thanks for posting, keep us in touch with how you're doing.

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Hi and welcome to the forum. I can't imagine ever having enough energy to work 12 hr. days. Do you drink 2-3 liters of fluids each day? That and eating really well help but I don't know of anyone on here who works such long hours. Also, really good medical quality compression hose help reduce how fast I feel fatigue. So you could try that. Good Luck, glad you've joined us! Katie

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I am also a nurse! double your age! I work shift work too, but only eight hour shifts. mornings, afternoon and night shift! need the old sleeping pills to sleep in the day! I guess I am one of the lucky ones that doesn't suffer from fatigue. I take aspirin 100mg daily at present. Again I am lucky my platelets are 670 so haven't started HU yet. Next blood test in November, so I live in hope they will stay that way.

One thing I have to say is, since starting the gym and attending 4 times a week I feel so much better. My migraine headaches which I have had for many years, long before diagnosis with ET!. have reduced from 9 per month to 3 this month!! so happy!! I do the usual that peeps suggest drinking H20 and good healthy diet.

Best wishes and welcome Lyn NZ

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Hi danib

Welcome to the forum. Sorry to hear about your exhaustion. I can sympathise, at my the time of my diagnosis (I have ET took interferon initially but have been on HU 2g daily for the last 8years)I was a senior nurse in A&E also working 12.5hr shifts & rotating onto nights. It was bloody exhausting- mentally & physically. I struggled with the concept of me not feeling at all well but pushing myself to my limits while looking after some people who I felt were swinging the lead (I promise I am not a judgemental person ) but working in A&E you see every aspect of society & some of it is not pretty.

I struggled on. I saw occupational health for the exhaustion who were helpful & said I could stop nights. I didn't at fear of being outcast as a non team player but had a 'considerate off duty' . It's very difficult working in the NHS when you work 13hrs with no break to have a drink (or wee) & I don't know what the answer is, I worked one day then literally didn't have the energy to do anything on my day off.

Eventually after having 2 children I gave up A&E and now work in school nursing. It's a better job for me. I hope you find the answer to your exhaustion & feel a little better. But working as a nurse is the best job in many ways but also the worst when you are poorly. Be kind to yourself, be honest, don't push yourself to the limits. No one will thank you when you nearly kill yourself ! Yes keep hydrated & get some fresh air but maybe consider finding a job that is compatible with you.

I hope that offers some support.

Take care, nickyanne x

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Hi Danib0923, welcome to our forum, it must be very tough for you having to work such long hours in what is a very busy job trying to cope with the fatigue, hopefully it will improve when your counts drop. Best wishes, Maz

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Hi danib

I'm a nurse too with ET and CALR positive. Only diagnosed a couple of weeks ago. I also do 13hr shifts and I'm struggling with fatigue and headaches. My platelet count is 1429 and have been advised to start interferon if they reach 1500 or symptoms are too hard to manage.

Was interferon suggested to you?

Best wishes

Sheila

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