Feeling low

[246810]

I'm trying very hard to keep up beat.but have overwhelming lows. I don't sleep in the day but I have to sit and rest after doing the smallest of jobs around the house . Going out is begining to be hard to do .

[Ballymahon2]

I felt stressed when first disgnosed in october last but have found a great support group in ireland who have helped me a lot feel a lot calmer is there a pbc support group near you i think you are very stressed and need support

[246810 in reply to Ballymahon2]

Thank you for replying x

[butterflyEi]

Have you had your ECG yet? If I remember rightly you have been poorly and needed antibiotics. I believe they can make you feel low although if it is a while back now that medication may be out of your system. Truth be told when getting the news for PBC it does come as a shock and can leave a body feeling low/depressed because of the uncertainty of it all add in the recent problem you had and confidence will have taken a knock. When you see the next doctor talk about your self and circumstances maybe they can help.

Can you manage a small walk each day. It is said that it helps to get some fresh air or perhaps sit in your garden. Drink plenty of water as we know it is good to keep hydrated.

After advice from the PBC Foundation I listen to meditation and visualization recordings on YouTube via my mobile phone. I like the voice of Jason Stephenson. I have found this has helped me sleep better and be more positive.

I do hope some of this is helpful to you.

Sending you best wishes

[246810 in reply to butterflyEi]

Thank you so much for remembering me, no I haven't had the ECG yet , apperently there's a long waitng list for it. I'm realy not sure what stage I'm at with the PBC, last time I saw liver doctor she said I was responding well to the ouriso . I have to scans booked for the 1st and the 8th .June . I have been doing little jobs in the garden , nothing heavy. I went for a little walk last night but felt rubbish when I came back. I'm not sure if the feelings are stress or real any more . I have been worried not to do too much waiting for the ECG.thankyou again for replying .

[GrittyReads]

Hi, so sorry that you feel like this. PBC is bad enough, but if you are feeling down it can make the symptoms/condition etc feel so much worse.

You don't say much about the exact stage of your PBC, or how it was diagnosed and is being handled etc. or if you have understanding people and medics around to help and support you. So, you really might benefit from talking to people who are in a similar situation, and to those who can help with exactly how you feel, and with the symptoms, as well as advising on whether there are groups near you, and so on. However, it might also help to say a bit more about your own PBC journey, and to find out more about it from the experts.

So, one good first step might be to talk to the advisors at the 'PBC Foundation' who host this website on 'Health Unlocked'. There is a link to their website at the top of the page: once there you will find loads of info, as well as email and phone info to link to their trained advisors. There are also PBC groups all around the UK, so you can find out if there is one near you. If you join the 'PBC F' (it's free) you will get even more access to the site, and their regular magazine: which has articles by the leading PBC Specialists - who work with the 'PBC F' team - to get up-to-the minute advice and info to all of us.

Another idea may be to talk to your GP and explain how you are feeling. In addition, if you post another question/comment on here, but maybe saying (very vaguely) where you live ... or giving a little bit more information about your exact symptoms, or treatment, or stage etc, then others who live vaguely near you, or who are in a similar situation may get in touch. Eg, I live in South Devon, and although my PBC risk is small (I just have AMAs and my bloods continue to be good, so I don't yet have PBC), when I first found out about my PBC risk I felt very similar to you, and began to stay in and not see friends (I felt they hadn't been very supportive). I was helped enormously by the PBC Foundation, and became much more self-confident (tho' I did kick some of the so-called 'friends' into touch!!).

I hope this helps, and that you find some support and can begin to spread your wings a little. Meanwhile, try to spoil yourself, give yourself little treats, and do things you enjoy: walking, dancing to your favourite music, reading a good book. It doesn't have to cost, and all exercise - especially dancing (the postman often finds me bopping around the kitchen!!) - is good for PBC.

Take care, Gritty xx

[246810 in reply to GrittyReads]

Thank you for replying , I feel all I have done these last few months is to call the docs about one thing and another, had a bad spell of lots of infections etc which stoped me in my tracks . No energy , when I did finally get a burst of energy I did too much I think . I've always been realy active , gardening walking dogs , teaching , you mention dancing ,hubby and I loves salsa dancing, but the thoughts of it makes me feel dizzy , had 8 weeks of lybrinitas dec and January . Have 2 scans booked for early June, and waiting an ECG 48 hours monitor . Had a strange turn one night , had to call ambulance . Thank you for replying, I feel like I'm slowly going crazy in my mind x

[PBCRobert Partner]

Hello,

I just wanted to add a little to what has been written above.

I know it has been a few months but you are still only recently diagnosed with PBC. As anyone on here will tell you, it takes time to come to terms with that diagnosis. Some even describe going through the grieving process as they feel they have lost the life they expected to have and are now settling for this new life with an incurable condition.

Add to that the discomfort, challenge and stress of dealing with the labarynthitis, etc, etc.

Nobody here will be surprised that you are feeling low. That would be a challenge for most people. So, first of: it's OK to be not OK.

But now we acknowledge that, what we want id for you to be OK again. From there, you can be even better than OK, but let's get you moving in the right direction...

You speak of doing small jobs in the house. Let me ask you: if you look back at anyone you have looked up to, admired, respected, or even loved and lost... have they ever sat you down and said they really wish they had cleaned the kitchen cupboards more often? I very much doubt it.

Pick your fights.

Exercise is good for us. Even with PBC fatigue, personalised exercise makes a huge positive impact on quality of life. The important word is personalised. This means you. Just for you. If you are feeling bad, do you do a "job" or do you do something that will be fun and make you smile? If you have only X amount of energy, spend it on what serves you.

You mention your hubby, pets and dancing: all of which can help. However, going out alone (particularly with ECG concerns, dizziness, etc) will be a challenge. So, other than going for "a walk", would it help to take in a nice park, hand-in-hand with hubby and having fun with the dog?

Gently.

Did you know laughter is a major form of exercise?

One other thing I love and I have found this to be extremely helpful is a gratitude book. I have a little notebook and each day I write one page in the book. One whole page. But that page is filled with just one sentence...

"Today I am grateful for..."

And I finish the sentence. It could be a big thing, it could be a small thing. When I was struggling, I was grateful for just getting through the day. Now I am in a different place, I am grateful for how my wife's smile makes me feel in the morning; for travelling to different cities; for great food; for a beautiful sunny day; and for the opportunity to make a difference.

You will have your own things for which you are grateful, even on the bad days. I promise.

There is science that says gratitude produces some of our happy hormones in the brain. Also, it is a nice thing to reflect, even on the bad days, on something we appreciate. Then the good days are even better. Then... if we go through a bad spell again, we have a book of happy memories we can go through to remind us of all the good we have in our lives.

As bad as it is now, I promise this is a great time to start a book.

I have so much more we can share with you. I hope you have joined the Foundation, as you will have access to more information, to videos, to our app, etc. Also, we can talk even if it is Skype or facetime to help you through this.

We are here.

Robert.

[246810 in reply to PBCRobert]

Hello Robert , thank you for replying . All of what you have said is true . I was actually very strong at the beging. My mum was very Ill with a liver compliant , started in the mid 70s . She was extreamly brave and took part in all the new trials , treatment and drugs. Not much was known then about the liver. It wasn't alcohol related . My liver doctor said she may well have had pbc too . She passed away in the mid 80s and the doctors were amazed how coped. I think too all of this is throwing up so may memories . I'm not able to talk to my family because I don't want to up set them. Although I know they must be thinking the same as me . My day is in his 80s and I don't like to worry him . I am grateful for this forum , and the lovely people on it. I think I would have coped much better if I hadn't had all the infections etc all at the same time

I'm thanking you again for being here . Jane

[shaza1966]

Hi , i too have been feeling very low lately . I have had pcb for 24 yrs , and at first it effected me it took me some time to get over the shock of it all . To me it felt like a death sentence . But it's a natural reaction and now it doesn't't effect me i'm not low for that reason my moods have got low as the fatigue as hit me real badly . My energy levels are poor. I have to sit a lot not through choice as i have problems with my back i have a lot of spasm going on as soon as i try to walk don't even get to less than 50 metres and bingo they kick in so i am in a catch 22 situation and it drives me crazy . I do a little job once a day well i try haven't been able to today kept fallen asleep due to medication i'm on . But after the job i do i'm exhausted and feel worse so i very much sympathise with you . The way i look at it is i will have really bad days and an ok day that i can cope with and i can smile still ,so this keeps me going. I wish you all the very best and hope for a speedy recovery with the way you are feeling that you can get to a place in your mind that you can be relaxed and happy with take care of you .

[246810 in reply to shaza1966]

Hello thank you for replying , 24 years !!! In sorry you are feeling low, too at the moment . Having a bad back on top of every thing else must be so frustrating for you. If you don't mind me asking how old were you when first diagnosed . After all the replays I've had I need to accept and make the most of things. I do like this forum , it's good to talk to people who understand . Some times what you can't say out lowd to family seems if it's written , some of the worries are coming out .

[shaza1966 in reply to 246810]

Hi i was 28yrs of age when first diagnosed, however after talking with my gastroenterologist he thinks i had it much earlier on as i started complaining to my doctor for years before he finally did full bloods and it said pbc . I moved from that doctor and started seeing another doctor , i could have been taking urso much earlier. I knew there was something wrong with me i told the doctor but i feel he became complacent . Some advice for you , it's important for you to find a doctor that you can trust rely on and is compassionate to work with you as now for the rest of your life you will be seeing them a lot . I am happy to say i have the best in my GP and my gastroenterologist , they are going to be just as important as your family . They explained to my husband exactly what was going on with me and told him to tell all of my loved ones so they stopped being scarred of this disease and understood mums disabilities and the are a great support . My husband my rock and i lean on him so much . I wish you well xxx