Gloria, thank you for the advise. Unfortunately, due to the nature of my job I can’t build in that way of working as much as I’d like to. Taking regular breaks though is something I am trying. I sometimes do it indirectly like by requesting the client for tea so as not to make it look like I’m taking a break!
Cat flower - thank you for the advise on increasing protein. This is definitely something I can do and want to do. I used to take whey powder a few years back… I think I need to get back into that habit!
Your welcome… And keep us posted as to how things progress. It is nice to hear if something makes a difference. It is also nice to follow and support each other as time unfolds… through highs and lows. Hang in there. It sounds like you do a lot of things right and you also know there is room for improvement too. My area for improvement is on living life with less fear. As a partner of someone with PSC I am learning that I can suck the life out of our days with my fear reactions. This too adds to fatigue for both of us. It is probably another discussion topic for a new thread though: although it does relate.
This past Sunday was a three nap day. Fever, slight abdominal pain, couch, blankets two cats all made for comfy naps.
And I still did not feel rested. $%$%#%$@.
I'm just curious about something Jeff. Do you exercise or take walks? I think when you work long hours, as you and the OP do, it's hard to fit in exercise but I find walks help to reduce the chills. Perhaps a walk at lunch time?
JeffDC - I had the same fever deal Sunday - 10 hrs daytime sleep, couch, fleece robe, blankets, 5 cats. Then 3 more hours sleep overnight to rest up..
Lara, I do not exercise like I used to, but we took a walk on Sunday, about a mile. I know that it would be better to take a walk when I get home, but the couch is too inviting at times. I have thought about a walk at lunch but have not acted on it. Good suggestion.
Jeff
Lara said:
I'm just curious about something Jeff. Do you exercise or take walks? I think when you work long hours, as you and the OP do, it's hard to fit in exercise but I find walks help to reduce the chills. Perhaps a walk at lunch time?
Alix, I hope you're feeling better now.
Jeff
Alix said:
JeffDC - I had the same fever deal Sunday - 10 hrs daytime sleep, couch, fleece robe, blankets, 5 cats. Then 3 more hours sleep overnight to rest up..
Re the daytime fatigue (worked 4 day wks till recently), I found it very difficult getting back to work after a walk in fresh air as fatigue would hit right after returning to the stuffier indoor air. Afternoon slump regardless of lunchtime walk would set in earlier and earlier and I didn't dare close my eyes even for a couple moments as I'd feel myself gently drifting off and did not particularly want to be found slumped over my keyboard fast asleep. A sudden flurry of action, or an asap or urgent task usually jolted me back to alertness. Ice cold fluids helped a bit. Coffee which I'm not wild about sometimes helped get through the slump, sometimes not. Walks after work rarely happened... the beckoning couch usually winning out.
Jeff - ditto on feeling better. My cholangitis episodes now often followed by 4 wks of the dreaded itch, hope you don't have same, nothing worse.
My gastroenterologist recommended a minimum two cups of coffee per day, based on sound scientific evidence that it prolongs the lives of people with liver disease.
Just to clarify, I don't know if I experience the same level of fatigue as either JeffDC or the OP. But I do know that some days are better than others and there are reasons for this. No matter how bad things may be, you can improve them slightly. You can really assess what you need to change.
For somebody suffering from bad indoor air, the question becomes do you need a job that is more outdoors? Perhaps a desk job isn't the healthiest thing for people with PSC. Perhaps the air in the office has problems going all the way into the air conditioning duct work, such as mold.
Often, when we make small changes, big improvements are noticed. Nevertheless, I feel compassion for you, Alix, and feel sorry that you are suffering with itching. I'm wondering if the afternoon slump came from eating a heavy lunch?
There's a nap for that!
The indoor air wasn't particularly bad, it was the contrast from outdoors and nice breeze to returning indoors, stuffy by comparison. Light lunch vs heavy is a good plan for a more productive afternoon, but with this disease all bets are off. Some surprisingly non-tired days regardless of activity, lack thereof or location, no rhyme or reason. Not working at the moment so giving into luxury of naps when needed, and cats do love when their people are horizontal. Acquiring a taste for coffee (other than lattes and frappacinos...) mightn't be a bad idea at this point.
This discussion is very encouraging to me. I think we need to really study those non-tired days and get all the clues we can from them. On the surface, there may be no rhyme or reason, but perhaps if we wrote down forty variables, we might find rhyme or reason over time. It is an autoimmune disorder after all. Our bodies are creating an autoimmune response to some thing or things. I don't believe the body is "unreasoning". I think there is a reason for every single thing that happens to my body, though unbeknownst to me.
For instance, if I walk about twenty five blocks, I might be okay in terms of fatigue the next day. But if I walk forty blocks, I've overdone it and will pay the next day until 2 pm. Why is that?
Too much sugar, and it takes extraordinary time for me to recuperate. Why?
If I eat spaghetti, I feel tired the next day. Why?
My guesses for how I got PSC: a stressful youth, exposure to campylobacter via a cut in my leg sustained from falling on my bike, (two weeks after the accident, I was in hospital for ulcerative colitis, the first time I was ever sick) drinking loads of tea, my mother being nervous during pregnancy.
How many of these guesses may be right? I don't believe in the genetic possibility much; none of my extended and immediate family has PSC.
What are your guesses?
I don't seem to have such predictable outcomes with adjustments to diet, exercise, environment such that a cause and effect can always be determined. A wonky immune system is going to do what it wants to do and when. I awoke Sunday a.m. feeling 100%, bright-eyed/bushy-tailed, decent energy, enjoyed cuppa tea, ready to head out the door with plans for the day. A half hour prior to leaving felt a bit cold, thought nothing of it till chills began and within 20 min was nauseous, feverish, buried under covers for the next 10 hours. No warning. No particular dietary indiscretions or change in habit/routine the day before.
With PSC there're the infection and inflammatory components. Perhaps on days when we feel just a bit under the weather or fatigued, these factors are in progress and flariing temporarily at low levels regardless of what we eat, how we sleep, exercise etc. Then it passes. Till next time.
Guesses: Years of previous autoimmune issues, one leads to the other. High stress levels in early 20s? Most people have highly stressful periods of time in early years and don't become immunocompromised. Too many sweets? Stained glass hobby with some lead inhalation? Maybe. Who knows.
I started replying to everyone the other day but then got too tired so just thought I’d finish what I’d started.
Mark - I’m already only working five days a week. It’s just that being an auditor I don’t have one set location so tend to be all over the place. The travelling can be draining and yet I love my job too much to give it up.
The financial side can be a worry at times, especially when I don’t know how long it’s going to be before I’m in the same position as some of our members here.
Sister graduated a couple of years back and she is helping with what she can right now. But she gets married in May and I don’t think it will be long before she and her partner start family planning so theoretically I can only reply on that help another couple of years max. I want to do more but just not able to. Dislike zoning into and out of conversations. I see the doc in a couple of weeks time so will see what he says.
Anna - thank you for the support. I hope you are keeping well. What stage of the disease are you at now?
LillyAnne - it’s funny you mention probitics. I started on VSL#3 last year after my gastro doc recommended it for my ulcerative colitis. I recently read an article on the Mayo clinic website that the same is being studied to see if it can help PSC sufferers. I had my colonoscopy this week and I have to say, that my insides look healthier than they did this time last year and I personally feel that is owed in part to VSL#3. It’s another matter that the condition of my colon doesn’t reflect how I feel. I’ve been wanting to hit the treadmill and the protein shakes a while now but just not been able to find the energy. I think I may have to force myself though.
Catherine - thank you for your concern. I do enjoy working if I am honest when I am not zoning in and out of conversations. Just wish there was a switch by which you could turn off fatigue… lol 
How are you keeping?
Hi Priya, I take the 5 hour vitamin B shot that you can get at any drug store, I have been using this for over a couple of years, helps me at work when I hit the wall, hope this helps.
Bill