Danib0923

hi Dani

I have ET jak2+ since 1994 it was diagnosed by bone marrow test I pity the poor nurse whose hand I was holding it had lost its colour by end of test I too suffer chronic fatigue but I am I was told by consultant to have two hours sleep every afternoon but the job you are in will prove difficult unless you are getting treated at hospital you work maybe if you your consultant and hr department all sit down explain situation you may be able to a plan that is suitable to you all especially the job you are in dealing with patients

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  • Haven't got ET, had PV then developed other consequences but I share with you the fatigue and need to sleep to get through the day. Just a couple of things. First you are a patient yourself and be careful you don't think you are immune to the problems of having a serious illness. Second don't feel guilty that you are ill and no longer able to do everything you did before, a common feeling among people who work in healthcare. Be honest with yourself.

    Yes BMB is not pleasant, I was lucky in that my wife was allowed to stay with me. Holding her hand was my payback for what she did to mine whilst in labour having not cut her nails.

    The future has changed but it is not without hope or the potential to set yourself goals. If this sounds glib it isn't, it took me a long time to come to terms with the fact that life hadn't worked out how I had dreamed but it rarely does for anyone.

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