What has your psychological process been like as your symptoms increase? I am the partner of someone with PSC and although I "think" i understand some of what he is experiencing, I know I can't really understand what it is like to have your body falling apart , knowing that you are headed for a really rough ride, even if you are lucky enough to get a transplant. I need to understand what it is like better than I do now. I would like to hear what your wishes would be for how you want to be treated and understood by a spouse. Sometimes I feel like I am doing a horrible job of it. I say the wrong things or focus too much on information that helps me to understand the disease so I can provide better dietary choices or ask questions and advocate at his doctor appointments or find remedies for various symptoms. Then sometimes I get caught up in my own fears of how I am going to cope, and that mode just raise the anxiety level for both of us... really not good. Then I feel guilty for being overly focused on that and I flip into denial mode...to counterbalance the hyper-focus.
Thank you, Stephen. That helps me so much to hear the psychological impact PSC has had on you. I know it must be similar for my husband, but is not verbalized very easily. Thank you for your honesty and for your detailed and clear response. You have blessed me because through gaining better understanding my compassion increases and my responses in my life are more in tune to the goodness that I hope to color my days with… Not fighting what IS, but accepting and going with the flow, making every moment important and lived as best as I can. May you be blessed by all you do for others in this community.
Steve’s honest and raw account of the feelings that go along with PSC are right on.
I did take a trip with my kids after diagnosis and did a bunch of things while I could. I totally overdid it and it was totally worth it.
As I got sicker, I had to give up many things as well, but trying to do a couple of enjoyable things kept me sane. For me a bunch of other behaviours accompanied my ups and downs. Some days I did too much and paid for it the next day - but it was my choice. I would have rebelled against anyone who might try to restrict me. If life turns into doing nothing enjoyable, it is even more depressing.
This goes for diet as well. There is no diet that works for everyone, so a lot of trial and error to find a diet that helps. Of course sometimes I would eat foods that I loved and reacted to, but it was worth the consequences and again my choice. Life isn’t kale smoothies without the occasional piece of cake.
I really feel for you as a caregiver! But unless your partner is with you in making dietary choices and trying remedies, I imagine you may get a bit of push back.
I think it is a challenge to ride the ups and downs of the roller coaster with a partner, but sometimes put your hands up and say wheeee!
Stephen's reply is spot on and very revealing....I even learned a few things, even though my husband Kevin has been through two transplant's because of PSC.
I love it , Ruby! Weeeee! Thank you! Ditto what I said about Stephens response. The honesty is so appreciated. This helps me a lot! Weeee , again!
Dolphin and all --
I agree, this is a great topic.
I had liver failure in 2010. At least 5 years before then I had the disease, but only thing I was aware of was being tired, and I thought i just had dry skin because I was so itchy.
I think my wife had the harder time when I was in liver failure. I was so out of it that my experience was terribly confusing, but I had no ability to reflect on what was going on, whether I would come out of it, and so on. My wife, that's all she could do, sitting by my hospital bed.
The path back from the liver failure was challenging. It took about a year before I returned to anything like my current functionality.
But it is the long haul that I think is harder. Day in, day out not being able to do this and that and the other. I cycle into depression and back out. The big thing that makes a difference in my mood is whether I focus on what I can't do today, or on what I can. It might be that I'm lethargic, or I slept badly, or like Ruby wrote, I just overdid it yesterday, but if I think, "what can I do?", and pay close attention to what my body is saying, I do better.
And I also feel for all the caregivers. At least at this stage for me, there's not a lot that's outwardly wrong with me. I just feel run down all the time, itchy, in bed a lot (but often not sleeping). My wife has a job she gets up for every morning -- it can't be easy for her to get the idea that I am lazing away in bed til 11 every morning, then napping in the middle of the afternoon, and not getting much done in between. She has to trust that I'm doing the best I can, she has to trust that what looks like taking it pretty easy is really the max I can manage.
I have been seeing a very good therapist, basically since the liver failure, and she's been great with helping to come to terms with having had UC since I was 8-9, all of the emotional challenges around that, as well as the limitations of my life today. I highly recommend that to anyone who can manage it. We also saw a couples counsellor for a year or so after the liver failure, and again he helped us to come to terms with what these changes meant in our lives together.
While my health is still good, I know this disease has taken a toll. I was listed last week, and that is a major milestone in the journey to a new liver. I still do not know how to feel about that, but I know if I focus on the long term, I will be in a better position to mentally face the trials once they arrive. It is unnerving to know that they will arrive at some point.
One thing I did when I had colitis is to write a journal. The journal has now had PSC added to the narrative. It's now up to 102 pages. Writing this has really kept things in perspective. I recommend keeping a journal.
Dolphin, if you want, I can email you the PSC part of my journal.
I think there is a way to send a private message so I can get your email address.
I am with you in the journaling. I survive by journaling. I have worked out so much by writing. It is a kind of tether for what might be run-away thoughts and a blockade for circular thinking. I need my journaling, alone time and meditation to keep my head in a good space for the majority of the time... But it takes a lot of focus and writing helps that focus. One of my journals is for just blathering , no rules or themes ... The other is for positive writing only. I try to get most of my time in the positive journal, but there are times I just need to blather uncontrollably. I wouldn't want to do that publically, so the journal is very forgiving. Ha!
Unnerving is the perfect word for how one might feel about the future. Tonight my partner turned more yellow than I have seen in the 5 years since diagnosis. It upset me and put me in a quiet , internal panic. ...asking myself, "do I tell him, or will that make him panic and want to isolate further?" I told and he drank more water and took his bile flushing meds. Hopefully that will help... but it made the reality of what is to come hit that nerve that you mention as, "un-nerving". I'd add to that, a sinking feeling.
Is the story of you getting on a list somewhere in this forum discussion, JeffDC? I'd like to read it, if so,,, if not, could you jot it down for us in a new thread? My partner is not listed yet. I know we are going to have the same mixed feelings when he is. His MELD is at about a 12 pretty consistently at this point, for the last 3-6months. Very symptomatic but no esophageal bleeding at least. Does have beginning varicies, stage 4 cirrhosis, extra hepatic main duct strictures, portal hypertension, occasional acities, lots of itching, some nose bleeds ,those bruise/ blood vessel marks, whatever they are called... can't remember now, nausea, tiredness, digestive symptoms, loss of apatite, orange pee, on and on. This is a very horrible disease, indeed and I am sorry for anyone who is dealing with it.