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  • Lost and Scared

    My husband, who is 41, is about to reach his 4th anniversary on dialysis. He goes to the clinic 3-4 times a week. He recently was hospitalized for high phosphorus levels, and it has contributed to a heart arrhythmia. I worry about losing him everyday...especially clinic days. He comes home with different side effects each time. I am always inspired by how brave he is as he goes each time. We just lost a friend, who's treatment caused complications to his arteries. I can't really talk to family or friends. I am scared, lonely, and so exhausted. The past few months have been really trying. I want to stay positive, but I feel so sad and angry for our family. We have a five year old. I am loosing faith on things getting better as I see him feel worse. I just wish there was more I could do for our family. We are drowning in debt, clinic hours and the after effects, and we get anxious about making plans we are not sure we can keep. We know that stress is part of the package... and sometimes the grief takes our breath. Any advice on how to do the day to day stuff better? Thanks in advance
    Last edited by Stephanie74; 02-27-2017, 10:38 PM.

  • #2
    I understand how you feel. I'm currently on dialysis and I'm not only constantly worrying about my health and and my life but also my family. I don't have children of my own but I have plenty nieces and nephews, between the ages of 4 and 16 . I'm always worried about how they will cope if anything happens to me.
    It's hard to remain positive all the time but we have to try. Sometimes all we can do is think positive. But it's okay if you have some bad days. Sometimes we just need to curl up in a ball and cry. It doesn't mean you are weak. Have your moment, cry, release everything then pull yourself up and continue living.
    You just have to take it day by day. I know you've probably heard that before but that's what I do at least. There are times where my friends want me to go out and I will say yes because I really do want to hang out with them but then when the day comes I may not be feeling up to it and I have no choice but to cancel . I listen to my body and don't push myself too much.

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    • #3
      Hello Mia,
      Thank you so much for sharing. Yes...the worrying feels constant. You are also so very right... we do need to keep trying to be positive...and yes, we need to just have moments to just curl up too. Thank you for both your honest and encouraging words...they really do mean so much. I understand everyday is a new normal... thank you again for your words. I do hope you will continue to listen to your body... and enjoy the moments you feel up to it...especially if you get to be around those little ones! Thank you also from sharing from your perspective as a renal warrior. I too hope you are encouraged through your journey. Thank you again for sharing😊

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      • #4
        Originally posted by Stephanie74 View Post
        My husband, who is 41, is about to reach his 4th anniversary on dialysis. He goes to the clinic 3-4 times a week. He recently was hospitalized for high phosphorus levels, and it has contributed to a heart arrhythmia. I worry about losing him everyday...especially clinic days. He comes home with different side effects each time. I am always inspired by how brave he is as he goes each time. We just lost a friend, who's treatment caused complications to his arteries. I can't really talk to family or friends. I am scared, lonely, and so exhausted. The past few months have been really trying. I want to stay positive, but I feel so sad and angry for our family. We have a five year old. I am loosing faith on things getting better as I see him feel worse. I just wish there was more I could do for our family. We are drowning in debt, clinic hours and the after effects, and we get anxious about making plans we are not sure we can keep. We know that stress is part of the package... and sometimes the grief takes our breath. Any advice on how to do the day to day stuff better? Thanks in advance
        Hi Stephanie, thank you for sharing and opening up here! I'm really sorry to hear about what's happening - it sounds like it has definitely been a challenging and trying time for you and your family.

        Have you or your husband had the chance to speak with a social worker? They can provide additional support and ways for you both to cope with a chronic disease in the family.

        We're wishing you all the best!

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