How to stay positive when spouse has no energy
My husband is 17 months post kidney transplant. Lots of up and downs. This time diagnosed with cmv. No energy, he's, coping better than me. But I know he is sad and doesn't feel good. It's me thats the real problem- I'm tired of waiting for some sort of normal life again. Sad, depressed, mad annoyed
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It will never be the same as it was before (at least not in my case), but you can get used to the new normal. If your husband is sad, speak to his doctor. This is something that they monitor when I go to see mine. Although I did have a double lung transplant, I would think it would be the same for all transplants.
Sure, you want things to be the way they used to be (or at least the way you remember them being). I'm 2 years post kidney transplant and what I'd like even better is for things to be the way they were 30 years ago! But I'm 78 years old and things aren't going to be the way they used to be and wouldn't be the way they used to be even if I didn't have CKD. Our lives are not static events frozen in time. I try to live as completely in the moment as I can. Yesterday's gone and tomorrow isn't here yet. I try to deal with what's here now and not worry about what isn't here. I'm still alive. I'm not on dialysis. I can try ot make myself feel better about myself by meeting challenges and try to find ways to make myself feel better about myself. Life can be tough but I still find it better than the alternative. Fight the good fight. You can do it
I am sure your husband would also like to return to a normal life too. There are many bumps in the road following a transplant. My surgeon said it best: “You have a condition and it’s called a transplant and you will have it for life”.
@sadwife, I hope you saw the helpful replies from @chickytina @m1rmiller and others.
I can understand your (and your husband's) feelings of sadness mixed with frustration. You may also appreciate connecting with other members talking about CMV in these related discussions:
https://connect.mayoclinic.org/group/transplants/?search=cmv&index=discussions
Have you considered talking with the transplant social worker? They are there to support you as well as your husband
I would suggest you talk to a social worker or therapist. Having a transplant is not easy. People think that within days, you're feeling great (at least they did with me). Unfortunately, I am like your husband - significant fatigue, other side effects from the meds, and spouse who alternatively doesn't care or doesn't acknowledge it. Despite working full time, keeping up most of the house, doing all the food shopping and cooking and taking care of three cats, he thinks I can do better. I feel worse now in some ways than I did with end stage renal disease. My doc and I are working through symptoms but it's time consuming - tests, making appts. with specialists, etc.
You need to have a bit more empathy. I know your husband is doing the best he can and CMV in itself is depressing; it's a very serious thing to deal with. I hope his doctors are taking care of that. He may need to see a PCP or internist, or some other specialists because transplant nephrologists are concerned with only one thing - the new kidney. He needs vitamin levels checked, a parathyroid level taken, blood sugar evaluated, and maybe more. Have you thought that he is sad because you are so miserable? I suggest you perk up some at home and stop being Debbie Downer. And you don't have to wait to do things for yourself. If he is able to care for himself, then get a part time job, a new hobby, a volunteer position, some new friends, become an internet movie critic, start reading interesting book series in a new genre. Learn mahjong, bunko, bridge, the guitar, the piano. Make things happen for you. You can create a new normal for your relationship and still participate in things that you enjoy.
I don't mean to be harsh but I am suffering with someone who doesn't want to admit that I can't do everything I used to and he continues to try and force me. It's degrading and humiliating and stressful. I don't want you to be that demanding person. Spend some time with him at his level.
Find things you like to do on your own at other times, tell your husband about them in a conversational and not competitive way. That way, he knows you are OK and eventually, he may be able to join you in things like card games or movies. I wish you luck. It's not easy for either party involved in this. But 17 months is the "still getting used to this" stage and things may turn around once the CMV is handled.
The key to this situation and those in similar ones is best stated as Paragem wrote "Spend some time with him(/her) at his(/her) level", The single most important way to look at it from the caregiver, familiy or friend level.