Worst days of my life

[Gabe61]

I’m not sure why and I guess it doesn’t matter but the last few days I was wishing I would fall asleep and not wake up.

I’m sure I’m not the only one that feels this way. I used to have so much energy! That went about 4 or so years ago and then I was diagnosed with PBC. I started on Urso and things became a little better. However the last 3 days have been agony. I’m so exhausted that I am sitting here trying to find the energy to shower. My depression is getting worse and I’m just praying that I will get some relief when winter is over. I rarely leave the house. I’ve tried to talk to my GP about all this but it seems like he doesn’t care.

Just feeling lost and alone.

[DonnaBoll Administrator]

Hi Gabe, thank you so much for trusting us and sharing how you feel with us. It is awful to feel this way - and thinking "will I ever be able to feel better?" One suggestion is try to think of one thing that makes you truly happy..... reading, crafting, walking. Try to engage in this activity, even for a short time. It's ok if you can even think of anything that would make you happy. Is there a friend who you can call? I have absolutely no doubt that whomever you call would feel so honored that you trust them enough to allow them 'in'. I agree that the weather can surely make us feel alone and have a lack of interest in anything. All too often our primary docs just don't know 'what to do with us' when we express feelings like this. I would certainly hope that if this feeling doesn't seem to be improving, that you consider talking to a professional. My own life has been forever changed after talking to a therapist. Hoping you belong to The PBC Foundation, they have a 'help' line 24/7. The phone number for that is 0131 536 6811

Seeking help is a sign of strength - never weakness. Knowing that we might need some help sorting out how - or how - we feel allows us to get that help. Please let me know if I can be of any other help. Thank you again for posting this. I can assure you that you are not alone having feelings like this.

[Gabe61 in reply to DonnaBoll]

Thank you Donna. Its just nice to be able to share with someone that “gets it”.

[DonnaBoll Administrator in reply to Gabe61]

Please reach out anytime..😊

[DonnaBoll Administrator in reply to Gabe61]

I do want to say that if any time you feel you do want to do harm to yourself, PLEASE go to medical facility for help. We all need others to get us thru the darkest times.

[Itsmecork]

breaks my heart to read your comment, but I fully agree with Donna. Dealing with a chronic illness is so difficult. Are you a person of faith? Prayer and worship songs have helped me during dark times. Friendships are critical. During a very dark day, I called a grief counselor (my mom had died recently) and I fully expected her to tell me to see a doctor, get some anti-depression meds, etc (which is way OK to do) but she said “you need a friend.” What???? Loneliness and isolation combined with chronic pain is almost unbearable to navigate alone. I prayed (lived in a new area and k ew no one) and the very next day I literally bumped into a lady at Costco whom I had attended church with 30 yrs prior! She had just moved into my area. I had her over for lunch and a walk. Even though I haven’t seen her since, just that one time made me feel like I was part of a tribe. You are loved. You are precious and valuable to your community. It took me getting out of bed and going to Costco to bump into that friend - so take action. Tomorrow will be better. Sending hugs…

[butterflyEi]

I am so sorry you feel this way and agree with DonnaBoll . Before my diagnosis I went through a very difficult time, I call that time my dark days, eventually I spoke to a Counsellor. My take away from those sessions is to tell myself "you are okay ". Somehow those few words looking in the mirror while cleaning my teeth, you are okay, quietly and mentally reassured me and helped me through. Fatigue can be overwhelming and unfortunately there is, as yet, no medical treatment. The PBC Foundation have a mantra of "movement is medicine" even the smallest achievement such as a walk around the house can be considered exercise. I remember listening in to Robert on the PBC Foundation one time saying that laughing at something you see or hear or singing is a form of exercise. Either of these I find uplifting although I have to sing when no one is near!😀

I am prescribed Sertraline as part of a treatment for the itch. This antidepressant helps even out my emotions. I wonder if your primary doctor would consider prescribing something to help get you through.

We are all here for you, we understand the peaks and trough which come with chronic conditions do not feel alone.

x

[DonnaBoll Administrator in reply to butterflyEi]

Thank you for your kind words of encouragement. We all understand how some days can be such a struggle mentally as well a physically. I remember my therapist always telling me "of course". She always reminded me that due to my family drama or my physical conditions I had that "of course". How I felt was 'ok'. It was often an expected response to how I felt someday. We all have to be kind to ourselves, don't we?

[liver-bird]

I was so sad to hear of your feelings. I too went through a time of grief for my lost health. I now live a life of compromise, taking a walk, but not far with plenty of rests. I still find music uplifting even though I no longer dance. I enjoy a watercolour art class, i am no great artist but sometimes surprise myself. The past energetic life is gone but I am adjusting to what is possible now. I hope you too will find your way to a happier life. Big hug. Diane

[DonnaBoll Administrator in reply to liver-bird]

Thank you so much for your suggestions to all of us. We so often have to make our own happiness, don't we? I love everything you said....

[21parker]

Gabe

I understand, wish it wasn’t so. Be brave, you have this! Do something, anything you like, self care is so important. Make a cake, play a game, do something you enjoy! and get outside! Even if for a few minutes. Look at the sky or stars, and enjoy our amazing world.

Call a friend, do something for someone else…

Wishing you all the best.

[lovesoccer]

I’m sorry you’re feeling this way, Gabe, and am glad you reached out to the group. Know that it’s ok to feel as you do, and that this is a place of empathy and support. Hang on to the happy things and the people in you life that bring you joy.

[DonnaBoll Administrator]

Just wanted to check to see how you were doing? thinking about you....

[Gabe61 in reply to DonnaBoll]

Hi Donna.

Thank you for reaching out to see how I am. It warms my heart that everyone has been so kind and supportive.

I’m doing a little better now that we’re getting more daylight and I can get outside more. Even if it’s just to sit on the deck.

I’m not going to lie, I still have those days when I don’t even want to get out of bed but I am truly grateful for the days that I can smile and don’t feel like I'm sinking in quick sand.

Thank you everyone for your support and kind words. It really does help to talk.