Hello everyone. Just wanted to pop in and see if you had any issues like this. I have noticed that little by little, even when I feel physically ok, I can't seem to handle stress at all. I'm at work right now and the stress of producing (I'm in a sales focused bank job), the stress of getting work done I just can't face it today. I thought maybe it was hormonal, but my period was over last week. I don't know if I'm hitting a wall or not. I have felt more tired than this, so I don't know what is happening. I just can't figure out what is happening to me?
Emotional stability/Stress tolerance - PBC Foundation
I think it is the fact that we are so tired all the time, after a while it just gets to you and EVERYTHING feels overwhelmingly hard. Just be happy you were able to go to work, and hopefully they pay you for your time...and not only your perfomance. I have noticed that people do not really seem to realise that I am exhausted and that I have no idea what they are talking about. And then every now and then a good day comes along and I am abke to get a few things done. I have been very efficient and good at what I do for many years. Now that I'm not doing so well it might all balance out in the end. We'll see. Every morning when I feel I just won't be able to do it I think "accept and be thankful" - getting to work and doing what I can is exercise to me. So, just do what you can and if it is nothing then it's nothing. I am so sorry that you are feeling bad but it will not last forever. Rest at your desk if possible and hopefully you'll feel better and never mind what anyone else might think. There is just no way they can understand. Lower your expectations! Just you being there is going to be what you can do today. Accept and be thankful.
Thanks for your response. Unfortunately, I am expected to meet goals and I'm not doing that right now. I don't think that its really my fatigue thats causing that, I have actually been hitting it hard since I got back to work after the holidays. I think I just hit a wall today and I realized that I just can't do it today. You are right, nobody really understands. I know they try and I have an understanding boss, but I really can't explain it. I am taking a partial day today and going home. Just can't deal with it.
I do understand! I know for sure that I will never be able to know for sure what I can do on a particular day, and yes, some days I just cannot make myself do anything. It really sounds as if you need a different kind of job, or simply work less. I think that is what I'll have to do too, but I have only known I have PBC for a year and I have started a diary to monitor how I feel, I need to know why certain days are so bad and others are a lot better. Good that you knew you needed to do this for yourself and curl up and relax. I can't read as much as I used too so I have started watching silly movies. Yesterday I saw The Lake House and I was so pleased I was able to notice the logical gaps. Story doesn't really make sense at all! Ha! My PBC stupidity hasn't robbed me of every braincell! Feel better!
Don't beat yourself up! You're trying to work...and work is stressful on its own let alone dealing with fatigue. That's near impossible.
Just a thought. Are you on Medicare yet? If not you should get on that. Because then you are legally disabled and then your place of work legally has to reasonably accommodate you. Can't get fired, they'd be flexible with you. Ask your boss and your doctor about it. Just a thought.
Well. Now that think it I got fired!!! But I didn't know it was coming or else I would have done this.
I had it bad yesterday. I had a blip in the road happen and my brain fog was so bad, I was so confused and sad and scared I was crying like a little kid. I've been unable to eat of sleep for two days. I have so little support it's scary. And I feel a bit better today.
You can hide. You just have to come out relatively soon.
Is it bad enough to think about taking something for the anxiety? It's not for everyone, but I did it for a while. They were damn hard to get off of and in the end the work has to be done to figure out how not to let the anxiety get this bad. I do understand though.
And I've been holed up in my bedroom rocking back and forth. And I'm so lonely and alone it's scary. There's nobody. Really. I was watching support videos on YouTube. Somehow it felt like group therapy and it soothed me.
I was up again all night which sucks because god my illness has the word fatigue in it. And I feel I should be able to curl up In a ball and sleep dammit!!!
My brain fog made me do something stupid. And I'm so afraid I'll get in trouble for it. I texted my ex husband something I should not have. And he always makes me pay. So knowing exactly what to do and what not to do, I get so worked up in panic and the fog it was like watching myself from afar mess up.
I'm so mad at myself.
Everyone else gets to run away from me...except me. And I'm so tired of being scared and sick and alone. Really.
How could brain fog take over that much. It was like I blinked and then in horror saw what I did the very thing I was focusing so hard not to do!! You know the guilty I messed up and nobody knows yet anxiety???
Thanks for your reply. Jobs aren't that easy to come by where I live and I have significant debt. There is now way I can quit right now, though I have considered taking some leave or even moving into another position. I need to be realistic about what I can do. The problem is that I have issues with dealing with not doing everything perfectly. I have always been this way. But in this job, it is easy to compare what others are doing. To be honest, last year was bad for me and I still had a decent year. Normally, this type of thing would just push me to work harder and get over this, but I don't have the energy or desire to do so. I will do my best, but the thing is, my best may not be good enough anymore. I guess its hard to deal with that. I am 45, and I didn't think that I would be at this point in my life. I feel much better after coming home today and resting, but I can't do that every day. If my business would break somewhat I would probably be less stressed. If others were struggling to get business, I would feel less stressed. But for the most part, I seem to be the only one that can't do anything right now.
I totally understand what your saying . I have a stressful job in nursing and I am really struggling with the stress at the moment. I am exhausted most of the time but like you I cannot give my job up due to financially not being able to afford to. It s really hard as I feel constantly on panic mode. I just wanted to say your not alone , I hav nt found an answer myself. I m going to try meditation as I ve been told this can help. I really hope you can find something that can help with your stress.
Try not to be too hard on yourself, everyone gets an off day, week, month - once in a while, whether you have PBC or not. These feelings will pass.
You obviously have much pride in your work and there's nothing wrong with that. Unfortunately being so stressed out will make you ill and eventually will have an effect on your work - not necessarily on the quality but certainly on the quantity. Luckily for you, you have recognised you are having problems, therefore you have the upper hand in that YOU can put something in place now, before others force you to.
Is your place of work aware of your condition? Are they a caring company and would you feel comfortable discussing your problems with them? I know I felt really uneasy even accepting or recognising I had problems let alone having to discuss and admit to others I was struggling. For me I had no option because I collapsed in work and had to tell them in my return to work interview. My GP told me I had been fighting against my condition for so long it was my bodies way of saying enough was enough and was just shutting itself down. She said I needed to listen to my body. Now if I feel tired I sleep, if I can't get all my cleaning done in a day..so what!...I don't beat myself up about it. I recently chose to reduce my hours of work. Fatigue has been a big problem for some time and when my work place offered early retirement I jumped a it...it couldn't have happened at a better time.
It seems as if stress is part and parcel of your current job. You mention you have considered taking some leave or moving position. Taking leave seems to be your best option at this time, at least you'll be able to charge your batteries. But use that time off to give some serious consideration to moving to another position - but it has to be a less stressful position...
Take care of yourself
I find my tolerance levels are zero if I am under any pressure these days but I used to thrive on it. I also I have problems with work output and fatigue. What I find most difficult is the long drawn out meetings, where my concentration goes.
What I have learnt though is to structure my day into smaller achievable chunks , so I at least have some positive achievement each day however small
Not sure you can adopt that strategy for your overall sales figures but it may help to structure the day in this way, this will give you some small positive achievements each day until your feeling better.
Reading your post one key thing struck me and it was " you don't have the desire to do so" is it maybe the right time to evaluate your career path.
Hi, I've suffered from fatigue for 8 years now. It was first diagnosed as chronic fatigue syndrome...but now I have PBC ...I can have physical fatigue ,,,but also emotional things drain me. Stress is more difficult to avoid than the physical things in life you need how to learn to cope with it. It sounds a bit stupid ...but breath... I was helped by a support group at my worst lead by nurses and occupational therapists. They taught me mindfulness...google it ...you can get apps for it. I used to have post it notes everywhere reminding me to breath deeply and relax my body . Stress produces physical changes in the body. A rise in adrenalin...it's sbout learning to reverse those changes. I used to lock my self in the loo sit there and just breath deeply and slowly for a few seconds. You need ques to remind you to do it..do each time you go to the kettle breath and think are you tense, if you are relax ...when you go to the loo or to your car it only takes a few seconds. It doesn't work overnight. There are lots of other things to do as well...Google adrenal fatigue...the Perrin technique ...you need to calm the sympathetic nervous system...acupuncture can help...I used to have brain fog and most of the time now I dint snd can cope with ehatvlife throws at me...I still have bad times but I know which tools to use to help myself. Good luck ps as a woman we do struggle with hormonal changes which don't help! And don't forget everyone has times when they don't cope well.
Hi I too worked in a very stressful job and I mostly thrived on it. Although I had PBC at the time, I hadn't been diagnosed yet. Reading your posts it looks very much like what I went through which was work related stress. You really need to see your doctor and take whatever help they offer. I had to be signed off work but I recovered and went back. I also thought I couldn't do anything right when in actual fact I was performing, in a lot of cases better than my colleagues. Please see your doctor as this may be nothing to do with PBC. I hope you feel better soon.
I think it is now quite well recognised that PBC can affect the chemical and neurological systems, so that stress and anxiety, plus even cognitive behaviour can deteriorate. A lot of sites list such 'symptoms' although they are not the main ones.
It is different, and you are right, it's not just 'the PBC fatigue'.
Some of it can be personal to your own life/set up/ psyche, eg: the feeling that you are in the grip of this wacky disease that hardly anyone has heard of - even plenty of nurses and GPs - and that it's a condition that loved ones fail to understand; all help to undermine us. This is when stress and the 'mind gone blank' moment can hit ... even when, maybe biologically, the PBC isn't getting to you in that way.
The other factor is exercise and relaxation. If those are slipping then I've read that the stress, cognitive, and emotional effects can get worse. I don't think I've got PBC, yet, but I do keep reading and researching, because it is such an insidious condition I want to 'know' it; plus, for some reason it's hard to get folks to take it seriously, so you really do have my sympathy.
Stop being hard on yourself, and take time off if you can. But in addition, treat yourself, spoil yourself, and check all the diet and exercise stuff at the same time.
A previous post describes having pbc as being on an emotional roller coaster and I think this is true. So you have the pbc and all its variable symptoms plus you have stress and anxiety which it brings. Add this to the other stressors in life such as money and work performance and it is no wonder people struggle.
You can't take away the pbc so focus on dealing with the stress. There are a number of ways - meditation and yoga help me
I hope this helps - keep talking about it to those who understand - us as troubles shared are troubles halved has some merit. Let us know you are getting on. Thinking of you. Diane
You mentioned just back from holiday. I too after Christmas break came back to work and it was awful, as you say really emotional - like everyone was out to get me! It really dragged me down and am only just beginning to feel more human again like you I have certain things that need to be done yesterday so there isn't room for taking time off. I might also add we tend to stress ourselves in that we don't want people feeling sorry for us because we have PBC so try to act as though we are capable of doing anything, if not more than a person without PBC, and the guilt that comes with taking time off sick - I know we are entitled to but that isn't what our heads say.
You just have to remember that although we think everyone is pointing at us they aren't, they all have their own lives to get on with and we are just another cog in a very big wheel.
Take care and try not to beat yourself up quite so much - don't think the miserable weather helps either!
I do feel more stress now than before I knew I had PBC. Where do I find the time to take care of all my symtoms? Everything takes longer and my cognitive ability is lower. No more multi-tasking (I was good at multi-tasking!). I hope I am going to be better than I am now but the fact is when I am off work I am SO much better. Sleep, exercise, food, hormonal issues, joint pains, cognitive ability, fatigue, blepharities, dry mouth, painful feet, nausea and stomach problems are just not huge issues. Now all of this sets me back and my dr (+ family and friends) doesn't seem to get it. I need more time to take care of myself! Much more time. I am glad to hear that so many of you have been able to keep working and that you are able to perform well at work. What keeps happening to me is that I try even harder and then end up getting hurt. I have fractured my left shoulder and obviously, since I don't have full use of my left arm, everything becomes even more difficult. I just wish my dr or someone could reassure me and tell me I will get on top of these things or that I will be able to work less so that I can manage all my symtoms. But that is just not possible, because nobody knows. I am better now than a year ago but I am more stressed now because I now know that there is nothing I can do to stop this from happening to me. No mindfulness in the world will stop my nausea or fix my chronically inflamed eyelids. I need time to deal with it but there is no "protocol" that dictates that having a no of things to deal with makes it ok to reduce your work hours. So I try to do it all - and fail. Hence stress... I know it is not this bad all the time and I know relaxation will help but I just feel that it so easily becomes too much. I used to be so much more resilient than this. I miss that person, I want my old self back! Sorry for the rant. It is just too much sometimes.
Hope you had a better day today Notor!
Thank you everyone. I'm glad to have this site to come to when I feel this way. I also am going to have my doctor give me the blood test to see if I am going into menopause. I really think that could be some issues too. If it isn't, then I will have to think long and hard how I go forward. Today I have been fine. a little tired, but not like yesterday when I felt like I was going to freak out.
I have been diagnosed with PBC in 2012. Along with it came fibromyalgia Sjogren's syndrome, Reynaud's syndrome and also severe sleep apnea. Extreme fatigue and exhaustion is so debilitating. My nerves are very raw and I mostly feel stressed to the max most of the time. I only go to work and home to recharge. I used to be a driving instructor; now my nerves are raw and can not take anything much. However, every day is new and I try to find something to be thankful for and keep going. Good luck to all of you in our journey to make the most of life.
Hi yes I would agree with those findings.physically I'm fine but mentally I feel almost like I cannot get motivated.tearful at times and I'm a tough lady!cannot blame my periods either as I'm 55 and no longer have them.i know as things progress some complain of confusion /Woolley headed ness but it's not that.plus I don't really have any other symptoms.mentioned it to my gp and they wanted to prescribe anti depressants.no thanks!
Just an update. My GP thinks I may be in perimenopause, she said that think of it as puberty in reverse. I have had a few days like the one I described above since, but since I know what to expect, I manage better. I don't think the PBC is all of it, but I think it is making it harder. Right now I am struggling with my weight. I can't seem to exercise and no amount of calorie counting seems to help the weight to come off. It comes off in a chunk, then with no reason, I will gain it back.