Myelofibrosis

Hi my husband was diagnosed with Myelofibrosis last year he is taking Ruxolitinib twice a day, he also has dementia which was diagnosed in 2013. The dementia is Vascular so apart from memory it is not too bad.  But I am struggling emotionally, he does not want to do anything he cant make decisions about anything even food.  Our family help where they can, but I feel so awful moaning about him.  He moans just getting out of the chair, he has no intension of going out anywhere unless its doctors or hospital appointments.  I feel very low about my life as it is, I do have friends but I cant keep telling them of all the little day to day things that happen.  Now the Consultant has prescribed injections once every 3 weeks which I am giving him, too early to tell if they are making a difference apparently it is a hormone. He has iron tablets to take alongside other medication for various problems.  Reading all this back to myself it seems pathetic especially when you compare it with other people and what they are going through.  Sorry.

  • Hello

    You must never apologise for posting on this forum, your situation is not too dissimilar to many on here. Sometimes we don’t look for answers, but just need to talk and air our feelings. We can’t directly compare our experiences with others, every single one of us is different, different circumstances and support and the ways we chose to manage. Anyone that cares as you are do for your partner, has my deepest respect. I know it’s not easy. Sometimes I feel I bore my family with my day to day trivia, to them it’s probably nothing really important, but I have no one to share my days events; as little as they are anyway, but for me cutting the grass is an event. I am sure your friends and relatives don’t mind, and hope they realise how difficult life being a carer is. I send my news via wattasapp, so if they don’t want to read it all, they don’t have to, I don’t often get a response anyway, but I have to share, without that, I wouldn’t have any interaction at all, apart from the Amazon delivery guy, but he usually drops the package and runs, must have heard about me Huh.

    So you come on here as often as you want, say what you want, there is a lot of support on here, we are a friendly bunch, honestly.

    I am no longer a career as sadly my Wife Linda passed on July 17th 2021, but I do know how tough it can be, and also very rewarding, seeing how much comfort we can give to our partners.

    let’s pray the injections help, best wishes to you both.

    Keith
    When you smile the world is brighter, you 
    touch my hand and I am a king, your kiss to me is worth a fortune, 
    Your love for me is everything I guess I'll never know the reason why, you love me as you do, that’s the wonder the wonder of you.
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  • Thank you for your reply I think the only one.  I am so sorry you lost your wife, I do worry about that happening to me.  No idea how you brave people get over such a loss.  

  • Keith thank you for those words, it is so true but, sometimes it is so hard to pick myself up.