Sleep

[Vespa27]

Hi everyone, is it usual to just crash mid afternoon and sleep. I am asking because its unusual for me to do this until now. I worked 3 days in a row, in London, as I said earlier, my work is security, and quite physical at times. Up to this last flare, I never used to do this so I am wondering if I should stop work or at least slow it down a little. Have any of you struggled with severe fatigue that has made you have to make the choice to leave work.

Also today recieved a message on the new universal credit website. I have been on a sick note for the past 2 months, and I need to put another in until my bloods settle after dropping steroids, so another month. They are sending me a questionnaire out asking me about my illness and how it affects me. I wonder if this is a good thing or a bad. Does anyone have any ideas what I should put on the form when it comes. I know that today I feel so sore and tired, which any of you know happens when we do something hard.....we pay for it a couple of days later.....my brain is saying I can do it I have to work and I need to, but my body is saying, screaming no way. It's very difficult as you all know.

Regards the sick note, I couldn't an appointment with my doctor until Wednesday so currently I don't have one, I would rather work than be on sick....benefits are no good especially this universal credit scheme. People cannot manage on this alone.

Another unusual thing for me, whatever is going on with my illness at the moment, it's affecting my eyesight. I had get my eyes tested, and not due for another 16 months.

Any advice welcome. Thank you xx

[Vivaldii]

Hi there Vespa I find the fatigue overwhelming some days It’s like I’ve done nothing and I am exhausted Compared to my peers I am like an old lady for energy.Its not surprising that you are feeling it at work .Id say eat the best you can and excercise if you can to boost your energy.I have dry sore eyes all of the time and pretty sure It’s from the pbc or Sjogren syndrome My eyesite has deteriorated a lot in the last 12months so will probably have to upgrade my glasses I use eye drops a lot for sore eyes .I wish you well with your symptoms and hope that you can take the best care of yourself possible xx

[Hidden]

I retired early due to the fatigue, but I was 62 and , working full time 10 hours a day with the travelling. I wanted to drop to part time but my employer wasn’t accommodating, being in a management role they insisted I continued working full time. At the time I wasn’t prepared to work in another job role, I needed the money too, or so I thought. I wished I’d taken that option so many times since though. So consider all your options carefully. Have you thought about perhaps taking a less demanding role within the security sector, with your knowledge and experience it might be worth looking at options.

My brain still regrets taking early retirement , but my body is thankful I suffered from awful fatigue for two years and it’s improved a lot , but I still get it if I don’t pace myself. However my afternoon nap has been replaced with a walk with the dog for a couple of miles come rain or shine. Just wish I could stay awake past 8 pm though.

The PBC Foundation may be able to help with the form filling.

[butterflyEi]

As Hidden has said the PBC Foundation may be able to help with the form filling also if you have a citizen's advice bureau near enough to you someone there may be able to help, google Citizens Advice and their page will come up. You mention working in London so is it possible to find something else in London which is less arduous or a different role within your current company? Or are you also commuting to get into London? When I lived in Essex and commuted to London, many years before PBC diagnosis, I found it very tiring.

As to your eyesight not everyone has eyesight problems so it may not be PBC so worth getting checked out. When I first joined on here I read that not everything is PBC related so best to check with the doctor.

let us know how you get on

[butterflyEi]

Hello again Vespa27 I have just been reading from a new link that I have found, and you may be interested in this section about fatigue

"Treatment for fatigue

Primary biliary cholangitis causes fatigue. But, your daily habits and other health conditions can affect how tired you feel. Researchers are investigating whether a medicine called modafinil (Provigil) may help reduce fatigue in people with primary biliary cholangitis. More research is needed."

best wishes

[Hidden]

Hi Vespa,

For your Universal Credit it may be that you want to say how you are affected by PBC and the very way it affects you makes that hard to do between fatigue and fog.

But it is important that you try to say how you feel. It is also true about PBC that fatigue is only one aspect, and that it is a symptom of this metabolic disorder, so no matter how long or good you sleep, or how good your diet is, there is a system-failure in the body and the process that should release the energy for even basic everyday activity just does not work for (whatever percent you are affected) of your waking time. You may like to refer them to article in British Medical Journal where Proffesor Jones, world class expert on PBC, talks about that fatigue and how it is under-recognised, even by medics. I'm not good on this medium, so I'll post this so not to lose it, then post when I have that link to BMJ article.

[Hidden]

bmj.com/content/345bmj.e7004 I hope this helps. Best wishes

[Yankeerose3]

I never took naps in the middle of the day before but today I was so tired, I crashed then when the phone woke me up, I was so exhausted. I have been out of work for over a week now and I don't know if disability at my work is going to approve my leave but it takes all I have to get up, go to work and then stay for 8 hours / five days a week. I very much do understand what's happening with you but sorry to say I don't know the answer but it works out for both of us 🙏🙏🙏

[Alley27]

Hi everyone....I am responding to my own post here lol....unfortunately, I couldn't remember the log in details for my conniefused account and had to set up Vespa27. I tried to log in to Vespa 27 and accidentally remembered my log in details to my old conniefused account lol....I am vespa27 and conniefused..so please don't be offended if I use either account. From now on it will depend on which details Imanage to remember when i attempt to log in.....brain fog is so unpredictable lol x