Although I only have very slight symptoms and get on with life best I can I still get into a very dark depression every so often.
I think it's the not knowing if I'll get worse in the future and thinking about how my wife will cope.
I don't want to see GP about it as I don't want to go on medication. It doesn't happen very often as I said but when it does I am very low and can be a very horrible person to live with. Only been diagnosed about 18 months now so I guess the whole prospect of the disease is still very raw.
One of the best things you can do, Mike, is to take the medication. UDCA will not cure you but, if you can take it, it will slow down the progression. If you can't then there is now a different drug available to PBC patients. And hang on to the idea that "most people die WITH PBC, not OF it". I was also diagnosed with very few symptoms and now, after fifteen years, I still have very few symptoms.
When it comes to depression you can't take chances x I urge you to see your doctor but you are in charge of how you want to manage it, I prefer the Councelling route and it's hard at first but if you get a good councillor then you really do benefit from it, no pills needed. With Councelling there are wait times but you can contact mind who are really helpful. If like me your first councillor you don't get on with tell them and they can change who you see. Speak up and be heard, I didn't at first and wasted a few weeks saying what I thought she wanted to hear but it wasn't helping me and I changed cancellors and now feel much better. I do meditation too and there are lots on YouTube free if you like that then go for meditation for stress relief or depression, again listen to a few to see which type you prefer, man or woman voice.
Good luck and remember people get depressed for a variety of reasons and talking helps, they look at what's going on from different perspectives.
At the end of the day if you want to help yourself and take some pressure off your wife then try Councelling and see how you go, tell the GP you want Councelling not pills and your in control from the start xx
I think it is quite normal for people with any long term disease to get depressed but like Twinkle26 says the counselling option is probably better than taking any more medication.
When I was first diagnosed (2006 although sure I had it from mid 90s) I remember reading that most people die with PBC rather than because of it also there was a woman in her 90s who had PBC for years. I know we are all different and the disease progresses differently but with medication as Rosehip19 says our outcome is so much better and for the non responders Ocaliva is now approved by NICE.
Do you have any other auto immune disorders that would also affect your mood? If so it may be a bit of a double whammy! I now have three and counting!
Can I refer you to an article in the Bear Facts magazine of Spring 2015 written by Prof. Neuburger which I find a very positive piece, he first talks about Ursodeoxycholic acid followed by information on itching. I know it is a couple of years ago but even though there is interest being shown by the big pharmaceutical companies the information in the piece is still good. (If you have not already joined the PBC Foundation it is free to join and back copies of the magazines are in the members section.)
I have read that a little bit of exercise is useful in boosting helpful endorphins which can raise our emotional levels. In the last year I have started walking most days and in the process lost a bit of weight. I feel better this year than last year and because I have been lucky enough to be involved in a study which has mapped my liver by MRI it can be seen that my liver is in better condition than the MRI last year. Even if you are having a dark depression day or week try to get out - I find staying in only darkens the mood.
sorry if I have rambled on a bit, hope the above is of some help but mostly it is a case of finding a way to rise above dark days, put dark thoughts out of your mind and let today be your moment rather than what may or may not happen in the future.
I am going to print that and put all over as reminders Thanks
Little things help me a lot Music is a huge help.
Hello essexmike.
Sorry you are finding life with PBC difficult at the moment. I've been itching for 7 years now, diagnosed 7 yrs end of this year. In the early days it is fair to say that I too went through some days where I didn't get out of bed (was weekend when no need), takes time to really come to grips with it all.
I too think that having PBC is a sort of maze, one day you are near the exit, the next you are lost.
I came to a decision long time ago now that regardless it isn't worth dwelling on PBC, life is still out there to enjoy. I think it would be needless worrying about it all as it might never happen and meanwhile we start to lose out on the better things we can still enjoy.
Life has downs as well as ups for anyone without anything that is long-term healthwise and if you can manage to grip the edge again and pull yourself over (until next time) you can get by.
I often wonder myself about my adult life. I married young (shortly before turning 19) to a wonderful man who had an health issue (asthma) when we met. He never seemed to let it hold him back, worked until a few days before his death 10 years down the line but I got used to living from day-to-day with sudden changes years later. (One reason now I do not trust doctors, seeing how it was for him.)
We had 2 young children together and they were just that when he died. I encountered ups and downs over the years being a single mother and then I met my now second husband when I thought I'd finally got through the fog I'd been walking through constantly for many years. We married within 6 months of meeting up in 2009 and before we were married a year I started to itch. I just could not believe it, really did think that life was stating to look up, I'd a decent job, own house, children all grown up and then bang, PBC.
I found it difficult knowing what it is like living with someone that has something that is unpredictable and have been in my husband's shoes. I get guilt feeling. I did give him the option to leave the day I was informed I had PBC but he said he was staying. Things not been good at times but one day we just decided this is what we wanted to do - crack on with life, make the best of it as we never know what may happen.
I've never taken any medication for depression or the like but I do think I have odd times had it but it's never evolved into taking over my life.
I feel insulted that now my GP records are onine and the consultations have been added, I ntoiced that back in January when I went for the repeat bloods, I was checked for depression unbeknown to me (I recall being asked certain questions). But in my view feeling down is a normal thing, it is when you can't get back out of that black depth you think you have got into.
I am sure that you want to enjoy your life as much as you can with your wife. It would be sad if things eventually took a turn for the worst and you'd not lived your life alongside her to the best. Also meanwhile you might just as I think, be worrying prematurely so that to me is time wasted.
You have had it tough. If you can reach out to help others like you do , we all can.
I do take Ursofalk every day. I don't have any other autoimmune diseases but I've had psoriasis for over 25 years had a lot of depressing moments with that. At one time I didn't wear a t-shirt for over 10 years but the treatment I'm on now is great my arms are clear and it's fantastic to feel normal again.
Not sure about Counselling not good at expressing my feeling vocally better at writing stuff down. I guess that's why I like this site. Reading your comments has helped a lot
I get what your saying I found it really hard to talk to a stranger about my life etc, I've not had an easy life and I'm only 52 now but I look at it now as being tested and it's not fair. But it's not for everyone Councelling but why not give it a try it's you and another person chatting about anything you like, tell them how you coped with the psoriasis.
If you can write things down do that and burn it afterwards that will ensure your privacy and no one else can read it. I wish you all the best with whatever you decide.
You are right. For most of us, myself included, I still haven't completely wrapped my head around this all. For you it's only been 18 months, for others a couple years. For me, 6 months. Good days, bad ones. If you're handling the URSO, wonderful! I'm one week into restarting it. I find out tomorrow if I can stay on it.
I have liver pains and aches every so often. Do you ever have that? I also have low days occasionally. Not as many since I've been on LDN. But, the unknown isn't as exciting as it use to be since being diagnosed. I get how your feeling.
Everyone says, don't stress about what hasn't happened yet. So, I'm trying to live in the now. I've developed this joint and muscle arthritis in the last month. All I can say is..... It's a constant reminder something is wrong. Makes it harder to not stress about tomorrow. Lol
They said in Dec. 2016 that I was in very early stage. Liver biopsy showed only mild fatty liver. The PBC diagnosis was off of elevated AMA-M2 test. Great news really, only I've yet to find out if I will he able to slow the disease down by URSO. If it wasn't for this muscle weakness and joint pain, I'd feel pretty normal.
My doctor wanted to put me on zoloft for my "new" bouts of depression. Like you, I opted to not go on it. Just another drug with more side effects and I didn't want anything else putting stress on my liver or kidneys. Do you read? That has helped me. And my husband too. When I'm having a blue day... I vent here, I read, I pray, and I consciously try to turn it around. You're not alone.
I get the odd twinge in my liver but not anything painful. I'm fine with the Urso was on liquid to start with but changed to tablets as it's easier. I'm on 1250mg/day.
I hope you will tolerate it okay, I get the odd bit of indigestion but fingers crossed all fine so far 😊
I do read occasionally but I find listening to music helps me keep calm. Well they do say music calms the savage beast lol
Seriously though I hope things go fine for you. Thanks for replying
MUSIC!! I fogot about music. Yes. That can help too. Just be careful of those melancholy tunes. Lol
Take care, be I touch.
Stella
I've been having some anxiety and depression again since my last consultant visit left me more unsure than ever, I seemed to have lost all my positivity and like you I don't want to take anti depressants.
I found an online mindfulness course although the course is not specific to depression and anxiety, it's been helpful. Learning some mindfulness techniques to practice does bring some relief from the persistent thoughts about the future.
The course was run by Future Learn (it's free) it's in the last week but you may still be able to join, if not they are going to run it again. You may also find some techniques on utube to get you started.
Its something you can practice anywhere any time and know one would know. I also liked an audio book by Ruby Wax called Frazzeld which has some techniques in the book, but written in a more light hearted way. I enjoyed it and am now looking for a group course in my area to join.
I too suffer from depression which I call the darkness usually it creeps up unnoticed , I don't take medication for depression anymore as it doesn't help me , the best thing for me is yoga and meditation and the awareness of the darkness so I don't fight it, it helps to let people around me know that I'm out of sorts , just be kind to yourself mike
I second all the suggestions above about music, mindfulness, and the 'talking to someone' if you could find someone you felt comfy with, and so on. I would particularly recommend getting lots of fresh air and being outside - sunshine is even better, but obviously we cannot guarantee that in the UK. Exercise - inside or out - is also excellent, as others have suggested, but it has to be something you like and want to do, but the endorphins are great.
Also, were you checked for all vitamin and mineral levels? PBC can cause a drop in vit D, and this can then cause a drop in calcium: there may be others, too. You might want to get a vit and min check, as a shortage of some can play havoc with our mood, if significant things are out of kilter.
Finally, keep having fun: make sure you are spoiling and coddling yourself. Do things you love and make sure you treat yourself, whether it's books, sport, food (but do be PBC sensible!) film ... whatever. If you are stress-free and happy then that is one of the best ways of fighting any autoimmune condition ... Plus, keep talking to all of us!!
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