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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Progressing Stage?

Hello, All.

I think we've entered into a new realm of this horrid monkey on our back, PSC. My fiance is not doing so good emotionally, nor physically. To sum it up, he's beat. Walking up the stairs to our bedroom he's out of breath. A walk around the block is out of the question. He's anxious with stress. His appetite is like that of a bird. Nausea, stomach pains, hiccups, the dreaded itch... it's all in full bloom. It's truly heart breaking. I can't bring him joy, nor can his pets or child. I do not know how to get his out of this dark place. I know I cannot begin to understand what he is going through emotionally or physically so I come to you. Can you give me any advice? Thank you in advance.

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Gloria,

I am so sorry and can certainly empathize as I have been in the same place with my husband over the last 5 years or so. It sound like you have done much research, by looking at all the discussions you have been a part of, so whatever I “give” to you here might be ground you have been over again and again… so, for whatever it is worth, here are my thoughts: There are a few things I have learned…

As much as you would like to, you can't take away the dark place, you can only love, empathize and do the dance: stepping in with encouragement when he is open and allowing him to have "his times" when he needs them. Loss of health is like any other loss and time to mourn is necessary to get to a place of acceptance of “the new normal”. (This is important for you to allow yourself this also; as I am sure you have had your own difficult times with this darn disease). To read articles, seek advice as you have on this forum, pass on the good stuff to him when you think he is open to it can be positive support. Non-pushy support when he is open to considering new things or ways of thinking about his disease (ie: changes in diet, doing more research, finding a nutritionist or therapist or other ways to enjoy your life together… whatever it is): when done in a respectful manner might help him to understand that you are on his team for the duration and accepting of whatever it is you face together.

I have times when I need support as I get in dark places with it all too, especially when he is feeling extra poorly. I have found encouragement on this forum and if you look at that thread titled, “Doctors, Denial and Difficulties with Chronic Illness Polluting Planning for Future” , you might find some excellent advice it that too. I also have found the site on Chronic Marriage helpful, which you will find a link to in the thread mentioned above.

It sounds to me like with the symptoms you described he may be headed towards a cholangitis episode. I am no health specialist but know that when my husband gets the symptoms you described, he is usually not eating very well, stressed and anxious. A round of antibiotic may be necessary if fever begins, but in any case, I try to make our life as calm as I can, putting no demands on him, allowing days of rest: even when I wish we could go do something “fun”. Instead I get “cozy” with the idea of close-to-home activities like learning new stuff by reading or watching on the computer together, cooking really good low fat meals, going for a stroll outdoors on flat land, reading something we enjoy together (especially funny), massaging his aching body while we talk or listen to an audio book, playing a game and just being content with the calm of home: not overcommitting or having over-active expectations, which is counter culture in the times we live in: is it not?

I feel for you, Gloria. Hang in there!

I wish I could help. But I would suggest putting the bed on the main floor to lighten his burden.

Realistically, admit to ones self that depression often accompanies PSC. Say you are too strong to be depressed? Wrong. It can happen and when it does, it strips the joy out of life, fatigues your body and paralyzes your mind in a way that you cannot fight the disease.

Get help. Tell your doctor or seek out a counsellor. For the first time in my life I had to take small doses of Zanax to help me with anxiety. Once I knew how to recognize the symptoms of depression and the triggers that started it in me, I was able to handle it without medication. I am post-transplant now and in perfect health. You can overcome all this bad stuff. Hang in there.

I wasn’t sure if hiccups was a sign of PSC. I have them too.