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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Bad Days - When do they end?


#1

It’s one of my bad days. They seem to always come the day after I hang out with friends I haven’t seen for a while and as I watch them, I sometimes feel a twinge of jealousy of their freedom. I struggle hard with this loss of what I call freedom myself. 3 1/2 months in and when do I stop having to force myself through each day?

Life doesn’t stop and I told myself that I will not stop… stay in the game, get back on that horse (farm girl in me there:). Keep moving on getting our late father’s estate wrapped up-5 yrs in now, fully reorganizing my life for my major remodel starting in May, and then just all the other things that come with home ownership and lovely but big yards! My life was challenging before diagnosis… father’s death in a fire, taking over his life, lawsuits, divorce, contractor stealing my money, losing my dog of 16 years and then cervical cancer issues then PSC.

… and damn this PSC for showing me what rock bottom really is. Every day I cry. I even had to tell my NEW contractor that there may be days I will start crying regardless of the topic. And the panic attack that may follow? Well, just be there for a quiet moment as I’m getting better at working through them. And don’t be alarmed when I heave in a breath as I hadn’t realized I stopped breathing. It’s crazy this emotional roller coaster I ride. The hours I can sleep. How much sometimes I just don’t care - like procrastination but on a whole other mental level.

I think the hardest part still is that when I do have good days or happy times, each time a bad comes and if it’s really bad, like today, I’m like wtf… am I not done with this part yet? I mean, my chest hurts as I type and my palms want to get sweaty! I slept and cried myself throughout the day. Yeah I got some things done, but what would normally take me a day now takes me 5 days. It’s wild and unnerving as I’m a true Capricorn… ugh

Paul H., You wrote this in another thread - the challenge is to live life as normal as possible… do we ever find that again? The quiet Peace?

“The challenge is to live life as normal as possible, doing the things you love to do.”


#2

Nothing to say .Just imagine that you are not only one who have to battle this monster.
If you believe in god just trust in god. Everyone has his destiny and no one can know and predict what exactly will happen to you. Maybe bright day will come after deep dark night .Maybe…


#3

Life is hard enough with normal curves in our way, but you sure have had a lot to handle. Sorry you have to deal with all this. The main thing that got me through colitis and psc was looking long term while sometimes living minute by minute and recognizing that it was ok to have bad days. It makes you appreciate the good days.
Jeff


#4

MzzP — I’m not a doctor and I don’t know you but just reading the list of things that have recently on in your life I immediately thought “good lord, she SHOULD be depressed.”

Life has pretty much kicked you when you’re down. Which may be making it impossible to get back up (laying in bed crying is a perfect example). It seems to me that discussing treatment for depression with a medical professional is a reasonable thing to do at this point. There is such a thing as situational depression, which is actually a healthy response to things that have happened to you, but even when it’s perfectly reasonable to be depressed you may need to treat it as you don’t want it to become chronic.

As an example, in my life over a period of four years there were four human deaths in my family, including my husband. One of my dogs died unexpected, two of my parrots (which I had had for 20 years) died, I shattered my shoulder, had to have reconstructive surgery and ended up with lymph edema in that arm and shoulder. I could go on… my point is, my doctor looked at me and told me she would be more worried if I wasn’t depressed but that I really needed to think about medical intervention for depression at that point. A little acute care for depression can go a long way to getting you out of bed and drying your tears.

azurelle


#5

Amen. Here’s hoping for better days. :hugs:


#6

Azurelle,
I had not heard of this before so I just did some reading on it. I will reach out to my “shrink” as I like to call her as it still brings a smile lol (been seeing her since end 2014) and see what she says. It seems pretty spot on and that I’ve probably been going through it for a number of years now. I do try to assist myself in all ways I can as best I can to heal and move on. Just this last round of health realities just really flattened my mojo. It’s sometimes to the point I just don’t care, and this to me is not good.

I’m so sorry for all your losses and struggles. Our pets are such a huge part of our lives, at least for folks like us. I just lost my big ol fish Leno after 23 years a few weeks ago. Had his tank going for over 30. Will be a first to break it down and put it away for remodel. My dog it was his time as difficult and beautiful as it all was… it’s just I have not yet had an opportunity to grieve as 1 week later is when all my health news hit the fan and it was all docs, research, holidays then PSC diagnosis. Rotator cuff surgery on my own in 2016 to 2017 and home leaks 2015 to 2016… and one of the darn leak just showed up again yesterday… I don’t get these Life challenges sometimes!

I did start taking 10mg of prozac end of November and it helped… but maybe? I need a greater boost. I’m just so tired of pills to keep this body going and adding more just drives me batty… I’m so damn healthy and then so damn not. My body is like a huge contradiction of sorts. Even exercise is difficult due to sciatica that decided to show up during rotator cuff recovery. Even walking makes it act up and walking is my sanity… cardio on an elliptical, just can’t do it since Fall 2017.

What is hardest for me now? I no longer have confidence that one day my life will stabilize and I’ll just go to work, come home, have a partner and live happily ever after beyond the usual ups and downs. After I knew I most likely would get my money back from the first contractor, I thought that 2018 was going to be My Year (actually had the same confidence for 2017) to at long last get My Life back on track… wrap up dad’s crazy estate, my home remodel, a stable income, my overall health staying on the upswing without further backsteps… and then, it all just shattered again. I feel like I went with it and I never thought I would admit this, but it scares me.


#7

I know my words are raw - so thank you for providing a safe place for me to come and just let my hair down and peel off the mask of Strong so that I can maybe begin to finally heal even in the midst of new not so yay health news. Everyone has their own Truth and Path and knowing that I can come here without judgement or otherwise… a true gift.
Thank you


#8

:pray:


#9

That last sentence - needed to hear that. Now to remember it and do the work to incorporate into my Life as I know I cannot continue in such a fractured state. And here I thought I was moving on from Inch by Inch is a Cinch. Yard by Yard is Hard.
Or another, Life is like peanut butter and jelly sandwich, you can only eat one bite at a time.

Thank you Jeff


#10

I cannot imagine how hard your life must be. Your depression is an understandable reaction. You’re grieving loss of ones you love and the loss of your health and old life. You are also ill and don’t have the energy to deal with all the challenges and changes in your life. You deserve to rest and focus on healing even if projects that were important do not get done. Your liver is fighting to regrow and function despite PSC. It needs your help and loving care. It is very hard to make the change in priorities but you must focus on healing the body until you know how much you are able to do without wiping yourself out. Not every PSC patient gets fatigue, which is very limiting, but we all need to take care of our health first. There is no cure but you can heal yourself by understanding your health, kicking as much stress and worry out of your life as you can, and then learning how active you can or have to be without making yourself sick.
You are coping with a very difficult time in your life. You have a lot of courage and determination to get through it and you will. Thank you for reaching out to this group. You are in my heart. Please take care.


#11

Jennifer,
Thank you… always some pearl or pearls of wisdom and knowing I draw from folks responses. The permissions your speak, spoke to me. Sometimes we need those reminders.
Jennifer