SRS How do you live with a chronic illness under your roof?(anonymous thread)

Discussion in 'On Topic' started by Darketernal, Jul 13, 2009.

  1. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Care,for all is like a bonsai tree
    We have been living with one for over two years now. My husband has chronic leukaemia and as a result of that, he also suffers from depression. We have a young family and sometimes day to day life is tough.
    We have both seen physiologists to talk about how we are coping and we have both been told we have the tools to deal with everything and considering what we have to deal with we are coping well.

    Most of our friends and family know about his illness. My family isn't that supportive, but then again my family has never been very good with emotional support. His family have been great, but as it's him that is sick, they cope a lot differently and sometimes it is us supporting them. Overall friends ask every once in a while how we are all going and that's as far as it goes. And even for that we are very honoured that we have people around us that care.

    Looking in, you wouldn't know how was sick. He still looks the same, he can still put on the happy face for visitors, and he still goes to work like he did before he was diagnosed. The problem for me, is that when he is at home, when the doors are shut, he's not happy and he isn't the same man. People expect us to be the same family we were before, but we aren't. People expect us to be able to do what we did before, but we can't.

    It's hard to explain the things that get to me the most, but it's a combination of small things, like him not being able to have sex without him having to stop half way through because he feels like he is about to throw up (sex is hardly the biggest issue, but it was what lead me to make this thread). The medication he is on makes him constantly fatigued and nauseas. He can't handle the kids like he used to and snaps at them. They are too young to understand why dad is yelling at them and what they did. There is no spark in him. There is no spontaneity in our lives. I feel like I am looking after everyone and because I am strong, it's just expected of me. He knows it had put a lot of strain on him and he feels guilty, but it isn't his fault. He used to be a very strong man with a very high pain threshold. To me that means what he goes through everyday must be really horrible if it is affecting him the way it is.

    We have two choices, him not take his medication and he dies or he takes his medication and he is half the man he used to be in spirit and in strength.

    This is our life, until a cure is found and that seems unlikely.

    It's draining and it is tiring, but most of all the hardest part is the change I see in him and his behaviour and every day I can't help but think about how much I miss who he used to be :(
     
  2. Crawling Dead

    Crawling Dead Gz-TeRRoR

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    Im not exactly sure....what you are asking here. How can you cope with your husbanding being down like this? Well, if you love him the answer should come naturally. Be there for him.

    You know when you have a bad day, and you come home and bitch to him, maybe even yell at him about something he did, but really didnt need to be yelled at for. You arent mad at him, you're just venting your emotions out on him, allowing him to carry some of the weight of your bad day.

    Thats whats going on here, only almost everyday is a bad day for him. He puts on a smile for other people, because thats what they want to see and thats what they need to see. What your husband needs, is someone to help carry the weight of his condition.

    I'm confident other OTers will link you to cancer support groups and what not.

    Your husband just needs his wife to be there for him. Best wishes to you and your husband :hug:
     
  3. 7960

    7960 New Member

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    does "chronic leukemia" mean he'll continue on like this indefinitely if he continues the medication? or is he just dying more slowly?
     
  4. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Care,for all is like a bonsai tree
    Thank you :)
    I have no plans on leaving my husband or not being there for him. I am trying to find a way that I can be a better wife so that this disease doesn't take over our entire lives. It has invaded so much of our life already, I don't want us to lose yourselves to it.
    People deal with chronic illnesses every day and I guess I just want some words of encouragement. He can't just have chemo and get a clean bill of health. This is going to be with us for a very long time and it's just so draining.
    He has an abnormal chromosome cell that prevents white blood cells from dying off. The medication he is on inhibits the chromosome from reproducing and brings his white blood cell count back within normal range and keeps it under control. There aren't any drugs on the market at the moment that can kill or reverse the chromosome abnormality. So until there is, he will always have it and the medication is what is stopping it from essentially suffocating his blood. His Dr refuses to take him off it, or lower his dose, because if he does there is a chance he will grow a resistance to it and it will stop working. We agree with him. He writes the text book on this stuff and is numero uno when it comes to blood cancers.

    50% of people who have stopped taking the drug have relapsed and 50% have had the cancer cells disappear. So until the next drug is created, tested and released (if ever) the medication is preventing his body from turning on itself. He has been told he should die of old age, as long as he takes the medication for the rest of his life.

    It's fantastic that we have access to medication that will keep him alive and we aren't ignorant to that fact. It's just it's so hard to live a normal now he has to take these. The best way to describe the feeling was by Montel Williams who was on the Oprah show about his MS. It's only a 2 min video but if you are interested (http://www.oprah.com/media/20090305-tows-montel-williams - from 1min). It's about how he has a constant reminder of his disease and that he can't just have a break.[/quote]
     

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