Continuing the discussion from Newly diagnosed ET JAK2:
Hello I am new here. Recently diagnosed with ET JAK2. I am Seeing my Hematology Consultant on Thus this week to discuss plan/ treatment. I am 36yrs old and a Mother of 3 yrs old and a Single Parent .I am Currently struggling … struggling with fatigue. I just can’t shake it . I am not coping even with light house hold chores . I am a Health Care Professional and works long hours and haven’t been able to work the last few weeks… I am here confused and stressed out I don’t know what to do . Is this fatigue just a phase ?? Does it get better with treatment?? Right now I just want to hide and scream [quote=“JoJoflowergirl, post:3, topic:7282, full:true”]
Welcome to our forum. I really sympathise with you. I have ET/Myelofibrosis Jak2 positive. I too struggle with the fatigue massively. I’m not knocking my team at hospital but I never feel as though the fatigue is taken seriously. It’s massively debilitating & the smallest of tasks seem so hard. Just to pre-warn you treatment isn’t always started right away & as your young for this condition your platelet count would have to be quite high for them to consider treatment other than a daily dose of aspirin. When you go to your appointment go armed with all your questions & maybe if possible take someone with you so that all information given can be taken in by two of you. You will hopefully also be given a clinical nurse specialist who will be there to support you when needed. I always suggest that looking at your diet too can help. Eating an anti inflammatory diet can help boost all the required vitamin intake that support a healthy immune. Please keep us updated how you get on id personally really love to know. I hope that your getting support from family & friends & that your employer is understanding. Warm wishes
Hello @Nichola75 ,jojoflowergirl, Erica, Jenni, Mary T and Leffer
Thanks for such kind words. I am humbled .I am glad to have joined this forum and also glad to hear personal experiences from all of you. I have also learnt a lot from this forum .
I was diagnosed 2 months ago and i was put on aspirin. I am glad they found out what was causing my migraines, weight loss , fatigue and itchiness as these were my main symptoms. But I haven’t gotten my head around it yet . I am experiencing mixed emotions. I am happy and sad at the same time, actually mostly angry with myself.
I had a relationship breakdown that left me on my knees and just as I thought was turning a corner., am now dealing with another illness. I feel like I am to blame … I was going through so much heartache and don’t think I handed it well.
I have told my family unfortunately they don’t live close by … my Parents are long gone which makes me angry too… because I need them. Times like this that I feel like I need them most and I wish I could bring them back . I have a wonderful friend who has been my rock and she looks after us when she can.
My work has been flexible work though still long hours so I don’t get paid if I don’t work… I am wishing now I had a permanent post.
Otherwise I don’t know what to expect out of my Appointment today . I feel all anxious and can’t sleep . I just want to feel normal. Thanks once again