Does having PSC make you just want to isolate yourself? If so, are there attitudes or any things that help you to reach out?
For me, it’s knowing that there are treatments and a possible cure at our fingertips that keeps me loud and outgoing. There are very few of us at it is, we have to be louder to make up for it!!!
Yes! People assume that alcohol is how people get liver disease. I find it important to educate as many people on the subject as I can. The more you educate, the more of an advocate you become, you tend to feel like that your life has purpose. And in many ways, at least for me. My life has gotten larger. It may take time to sort out the inner feelings.
There's two components to this isolation - the mental and the physical. The fatigue can creep up on you slowly over time so that you don't really notice, but it can keep you from a lot of social activities. For me, I would get absolutely exhausted when I would go out with friends and found myself subconsciously avoiding these situations and people as a result. My solution was to realize and work within my limits. I'd invite my friends to participate in more low-key activities that wouldn't knock me as much.
And yes, if you say "liver disease" the other party will without fail assume alcohol is involved. I try to be specific to get around this presumption: "I have an autoimmune disease affecting the bile ducts of the liver."
It’s sad to say, but it is what it is. There’s worse diseases in life that we can be labeled with. And I don’t say that in a light way trust me. Racism has been around for how long? And yet it continues on starting at a government level, people of athority(police), teachers, and religions. I feel sorry for those who criticize and pass judgement on those who are effected by illness. Not knowing the facts and making statements towards others is a bold way to live your life. Keep your chin high regardless of the way you live your life. We all have demons to chase in some sort of way. Live your life to the fullest, and try your best to respect your neighbour, regardless of race, illness, or political views. We’re all human and all of us came into this world the same way as the next. We all have a story to fulfill until we move on…what you do with your time in between is up to you to decide. Being an advocate is great…educating people the facts on PCs. I try and educate to people the facts on organ and tissue donation. 90% of Canadians are in favour in organ/stem cell donation, but less then 25% have made action to donate…we need to make people aware that the gift of life is the most valuable thing you can offer to someone in need. To many people lose their fight/battle due to the public not knowing the facts. Most religions are in favour with organ tissue donations…so why don’t they speak about it? so why don’t people act? I’ve been a donor since I was 16 years of age. 10 years before I knew I had a liver disease. People need to educate themselves and learn the facts about the gift of life.
Chronic illness of any type can make people withdraw from life. In lower life forms in the mammal family, this pulling away from life precedes death. Humans are the only species able to recognize this psychological enemy and do something about it.
Perhaps, this quote from the Book of Deuteronomy, Chapter 30, verse 18, says it better: "I call heaven and earth to record this day against you, that I have set before you life and death, blessing and cursing: therefore choose life, that both thou and thy seed may live." There is more, but you get the idea. We are not made to dry up and blow away before our time. In my case, I had an infant grand daughter that I did not want to grow up without a grand father. That was a very powerful force that stirred my inner self to fight PSC. There were days I thought I was losing the battle, but as long as I could take a breath, I would fight.
Get professional help if you struggle and cannot seem to conquer it. Admitting to yourself that you are depressed is an important first step. Jack, a male nurse at the Hepatology clinic said to me, "if anyone with a chronic life-threatening disease says they are not depressed, they are lying." I finally said it out loud to myself. At first, I did not like what I heard. but, I said it over and over again until I realized it was true. Then, I picked the course of action that was best for me. I found a transplant support group that welcomed me with open arms and supported me and my wife right through the transplant experience. I may be unable to control what's happening to my body, but I will not let it affect my mind. A neighbor who saw me walking my dogs every day, struggling along, said to me, "Paul, you are one tough bugger." Hmmm . . . I liked that he recognized that. I liked it so much that I changed my email to be, ■■■■■■■■■■■■■■■■■■■■■. The people where I formerly worked started calling me Dr. Toughbugger. The humor helped strengthen me.
It is funny how silly stuff and laughing in the face of adversity can make a difference. There are many personal stories by people who were ill, prisoner in a POW camp or hopelessly lost in the wilderness who used humor as a way to remain linked to humanity and life.
Find the right combo for yourself and get determined to beat PSC. It's behind me, now, and I am glad I fought rather than gave in.
Adrian,
Try to understand the science, get to know all there is about PSC.. Enlighten others and contunue to live life to the fullest possible.
.
and ex[plain
In my experience, I always preface liver disease conversations with "I have a Non-Alcholic liver disease" and that I have never drank a drop in my life. I go on to explain that it's a disease of the bile-ducts of the liver and over time as those ducts get more diseased it ends up killing the liver. I tell them there is no known cause or cure other than liver transplant. Most people think I just have a real good sun tan although those who know me well know the real reason for this discolored look.
You certainly will find out who your true friends are with any type of disease. I just have to ignore any conversation that would be critical or hurtful. From where I live in the south really all my interactions with people have been of a very understanding and concerned attitude to my need.
I hope this helps some what.
Mark
Thanks everyone… It does help to hear how others deal with it.
Yes I find that when I tell People that I've got PSC I say straight away " and it's not because I drink ". I don't explain too much because I think they're only thinking I'm making excuses for something they've never heard of unless liver disease has been associated with alcohol
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MrTwissel said
Yes! People assume that alcohol is how people get liver disease. I find it important to educate as many people on the subject as I can. The more you educate, the more of an advocate you become, you tend to feel like that your life has purpose. And in many ways, at least for me. My life has gotten larger. It may take time to sort out the inner feelings.
I have not encountered any negative experiences from other people. In that, I know I am lucky. Knowing that I didn't bring this disease on myself helps a whole lot in coping with this disease.
Over the winter, my body was building up to a cholangitis attack that announced itself in late March. During this time, I had a lot of fatigue. I would come home from work and sleep for an hour or two. There was one occasion where I could not make it to tennis practice due to the fatigue.
I still do not feel like running when I get home from work, Running used to be a highlight of my day.
But it beats the daylights out of how isolating it was during the year I had active UC.
Yes I think PSC isolates me. I'm still doing quite well, but I wonder whether the television and internet will grab too large a share of my mind as my condition worsens.
It's socially difficult having PSC. I don't like eating high fat food. The other day I was invited for dinner after a funeral, and had butter chicken. If I didn't have the chicken, I would have had just white rice with salad. But I had the chicken and it was too high fat. I tried to explain beforehand but I was unsuccessful. I will have to try again. But I don't always want to tell people I have cirrhosis. I don't like dinner invitations.
Also, my energy can hold up until a specific moment arrives and then it's gone. So, the usual length of time it takes for guests to leave, or visits to end is too much.
I have many fears about my future.
I haven't encountered anyone treating me as if alcohol is the cause of my liver disease. I tell people have an autoimmune disease that affects the bile ducts of my liver and that seems to be enough. Most people I know have been extremely supportive.
For the past twenty years, since I was diagnosed with UC and Ankylosing Spondylitis, and now with hypothyroidism and PSC, I remind myself how so many people have it worse off than me. I feel lucky in a lot of ways. Having to deal with these issues makes me realize that every day is a gift (some days are better gifts) and reminds me to show the people I care about just how much I love them. I don't mean to send like Polly Anna, but I truly believe that attitude matters and I try to look on the bright side.
Crewmom
I'm a year post diagnosis and I would say there are definitely times when this is true. For me, the period post initial diagnosis was the worst as all my knowledge came from online articles and medical papers that didn't paint a rosy picture. I felt like I'd lost my future as was initially intended but decided that I would change my goals to suit the worst case scenario. When I tried to talk about how I was feeling to the few people who I'd confided in about the condition, I was told to stay positive and not think the worst. I was told that I was being negative and 'giving up' when all I felt like I was being was 'realistic'. I hadn't given up on life.. I'd just found a different way of looking at it. I found this forum to be my biggest saviour as I was able to talk about what was on my mind with those that were in the same boat as me and who understood how I was feeling, without being judged.
Initially (before I'd told my cousins about the condition) I avoided having to drink on night out by offering to drive them... it gave me a legit reason not to drink. But even then I didn't feel like I was with them and I didn't enjoy being out. Now that they know though it's just easier, and more comfortable, saying no to clubbing / pubbing nights out. I don't put myself in situations where I am likely to isolate myself. Instead I organise meals out, cook a meal at home or join the cousins on a trip to a dessert lounge :-)
I still make mistakes though, even a year on. Less than two months ago I foolishly attempted to join the girls on a night out when we went for my sister's hen to Vegas. I managed to stay out for all of 2.5 hours, stone cold sober, miserable and completely shattered after a day of walking the strip, before coming back to the hotel on my own and having a sob. I realised then that I was doing myself no favours by putting myself in a situation that I wasn't comfortable with and had no energy for, just to seem 'normal'. The remaining days I only joined the girls for the day activities and slept otherwise. I felt better for it.
Recognising my limitations, accepting the changes in my life as a result of this condition and working around these are going to be key in my remaining at peace with this disease. I don't doubt there will still be downs but I am positive I will get through these with the right people around me.
You all are wonderful. I agree with Pryia, I find such support here. Thank you all for your honest , heartfelt responses.
I have to say that was Beautifully written Pryia. Gosh, I know that feeling, even as a caregiver. I do things sometimes just to feel normal. For instance, I think I SHOULD try to go out and have time with a friend when honestly, if I thought about it , I really just desire a quiet space, all to myself to find some calm and peace. Learning to honor that is really quite empowering…
And Stephen, I agree that it is fine and real to accept that it sucks not feeling well, as with acceptance of how painful life can be comes empathy for others… and you certainly have that. It isn’t a bad attitude to be real about the disappointment and pain at all. And then there are times that we experience an aliveness through this difficult thing we face. Again, I don’t think it has to do with attitude , but rather just the fluxuations of this experience of being human:ups and downs. Crewmom , I think is not a Polly Anna. She sounds like she is dealing with her illness in a manner that is really good and she is able to be in that mind right now. Hopefully it will be the norm rather than the exception… but to expect to always be up about it isn’t realistic and could lead to disappointment in oneself when the view changes. Compassion for ones self, no matter the mind frame is key.
Stephen,
I did not mean to imply that all people should adopt my attitude and if they don't that they are inadequate. When I say that I truly believe attitude matters I am only referring to myself. If I allow myself to go down the path of worry, fear or self-pity, it affects how I feel physically and it affects how I treat people around me. I make a conscious decision on a daily basis to try to maintain a positive attitude. And I truly do have a lot to be thankful for.
Dolphin5,
I don't believe I am ever "up" about about having any illness that I have. I simply accept it and look for ways to deal with it in a healthy (for me) manner.
I have had other obstacles in my life I believe help me cope with my diseases. I have had many years of therapy and counseling and I believe the skills I learned help me deal with chronic illness. I feel fortunate to be alive today and for me that is enough. I am only speaking for myself.
I am sure other people find other ways of coping and to each their own. We all have our own paths to follow.
Crewmom
Thanks for the clarification, Crewmom. Please know that I did not take any offense to what you said above AT ALL. I just know that some who are having a more difficult time with coping might respond to your method in a manner that compares, winding up feeling as though they are not coping well. Finding your own path towards coping is sometimes one step forward and 2 or 7 backwards. That was my point in my response above. That is: to not be surprised or beat yourself up when you are not dealing with the diagnosis and symptoms very well.
The strength that you find , Crewmom, and how you go about dealing with your PSC is inspiring to hear and I would encourage you to share more. People like you help those of us who are trying to find better ways to cope. Thank you for sharing.
Stephen said:
Crewmom,
Thanks for clarifying.
Stephen
Crewmom said:Stephen,
I did not mean to imply that all people should adopt my attitude and if they don’t that they are inadequate. When I say that I truly believe attitude matters I am only referring to myself. If I allow myself to go down the path of worry, fear or self-pity, it affects how I feel physically and it affects how I treat people around me. I make a conscious decision on a daily basis to try to maintain a positive attitude. And I truly do have a lot to be thankful for.
Dolphin5,
I don’t believe I am ever “up” about about having any illness that I have. I simply accept it and look for ways to deal with it in a healthy (for me) manner.
I have had other obstacles in my life I believe help me cope with my diseases. I have had many years of therapy and counseling and I believe the skills I learned help me deal with chronic illness. I feel fortunate to be alive today and for me that is enough. I am only speaking for myself.
I am sure other people find other ways of coping and to each their own. We all have our own paths to follow.
Crewmom
Dolphin,
I like your comment of one step forward and 2 or 7 backwards. A lesson I learned several years ago is to understand and accept the fact that bad days will happen, and sometimes very unexpectedly and quickly.
Knowing this helps keep me a lot more grounded, less high-strung and more appreciative of the good days.
Jeff