I know this is a well discussed topic already on the forum but I just need to vent.
I’ve been back from holiday 6 weeks now and I still feel like I’m ‘jet lagged’. I know I’m not and that it’s just the fatigue. Admittedly, the average 46 hour working weeks since return haven’t helped much either but I DO have to work. How do the full time workers out there get on with living a ‘normal’ life during times of fatigue?
I don’t have much of a life between work and home as it is. Once a week I go out for a meal with a friend but even that can be a struggle at times. I can’t concentrate on conversations and spend a lot of time yawning which makes it look like I’m disinterested when this isn’t the case. I come home feeling guilty and miserable for wasting my friend’s time.
How do I regain / reserve energy for myself? Bar quitting work / reducing hours coz this is not an option. I am soon to be the only breadwinner in a home of three (Mum, dad and me).
I don't have advice, Priya, but I just wanted to send my good wishes and positive thoughts that some of that energy returns soon. When is your next visit to the doc?
Thank you. I’ve got a colonoscopy in a weeks time and follow-up visit in the first week of March to review the results of the MRCP I had last month. Also need to get to the bottom of why I feel so ‘duh’ brained considering I’m still in early stage
I would highly recommend reading Sarah Ballantynes book ' The Paleo Approach' which talks about Autoimmune Disease and healing your body.
Ever since i started an Autoimmune Paleo Diet (which is a essentially a Paleo diet plus the elimination of nuts, eggs and nightshades) i have found i have extra energy, am less fatigued and generally feel much more motivated and positive.
Or try the Specific Carbohydrate diet. Makes me feel good. Very similar to the GAPS diet and Paleo diet. Best wishes for good news at your dr appointment.
I’m sorry. My son struggles with it
A great deal. He won’t admit it.
He’s in his senior year of school.
Studying literary wipes him out.
He is still playing hockey, working
& going to school. His friends understand
Because I’ve explained to them that
Gage fatigues easily & it takes everything
He has to push through to keep up with
Them. He falls asleep during outings
& they just let him sleep. He has to leave
School mid day to rest. Thank goodness
My dad lives just a block away. We don’t
Draw attention to his fatigue. As his mother
I find myself haveing to e-mail the school
Daily to excuse him. I’m humbled at the deteination
& sheer will he possesses to just push through.
It’s incredible. You shouldn’t feel bad
About not being able to go out with friends.
You should feel incredibly proud of yourself
For being able to maintain as well as you are.
You are not alone. The reality of it is
People that don’t really understand PSC
& even the Dr.'s that treat the patients
Don’t understand the chronic fatigue.
Keep your chin & spirits up!
You are Amazing! 40+ hours a week is
A lot for people without this disease.
Priya, it can be tough to do. First, I try to dump the guilt by doing the best I can at the time. I yawn all day at work-people there know about my condition. On most afternoons, my chin is propped up by my left hand, with the elbow on the desk.
There are a lot of days I sleep for an hour when I come home. On most weekends, I take a nap each day, sometimes two, my record is three in one day.
Hello, Priya. My fiance deals with this fairly well I think. I quote our doctor, “I’m amazed by his ability to work full time.” What we do is take a “shift” approach. Take your day, break it into several mini parts with small walks, yoga stretches, deep breathing, whatever it is you can do; create work shifts and recoup shifts. It was hard creating the habit but it works. As I’m sure you know, it’s a proven fact the brain is stimulated by some of the activities listed above. Stay hydrated, have your vitamin levels checked and keep snacks close. A favorite are natural energy chews packed with electrolytes and vitamins. Good luck!
Low protein levels can cause fatigue and since with liver disease it is more difficult to process protein from food, there is a lack of absorption. My husbands physician has recommended that he has 60 grams per day. He began supplementing his diet with protein drinks which has made a difference and it also helped to reduce the amount of muscle cramping he has in his legs and feet. Here is a site about low protein levels… but talk to your doctor about it or ask to see a nutritionist that understands liver disease. We went too long not knowing this info from the old gastro doctor. Don’t understand why nutrition is not automatically part of patient care. It makes no sense. So, we have to do the homework ourselves.
Great info, Cat Flower. I forgot to mention the protein drinks. We (try to) do a shake daily. It’s very filling, 40 grams of whey. Cleft makes a bar that has 30 grams. After having his shake, he always gets a boost. It is hard to drink daily though when you have little appetite.
Cat Flower, a pickle will get the cramp out, we do baby dills.
Sorry to hear you are having ongoing issues with fatigue. If there is any way you could cut some of your living expenses so that you could cut back to 5 days a week that would make a difference. It's clear you are not getting enough quality rest. I admire you though for meeting the needs of your parents. That's a noble thing to do.
One thing that was discovered in my journey with PSC so far is that I was diagnosed with central sleep apnea. I found myself terribly fatigued at times and not resting well at night either. I too was falling asleep during conversations and unable to give full attention when people were speaking. Since going through 3 sleep studies and now on an auto-BIPAP machine I am resting much better. No more snoring either :)
Do you have any brothers or sisters that could assist any financially with your parents needs? I'll keep you in my thoughts and prayers.
Fatigue sucks. I hear you. I wish I had some concrete answers for you, but I’m struggling my own self. Best of luck, and hopefully you find something that works for you.
Not sure if anything here would help, but here's some probiotic discussion/information that could shed some light. I know my PSC'er does better when I'm pumping a TON of anti-inflammatory fruits/veggies/teas/juices/herbs/roots into him along with organic yogurts, low gluten, and a lot of protien (shakes/foods) and OTC vitamins. Sounds like you're on the right diet track but maybe some tweaking, see what really gets the motor working right?
And by the way - what a work week! Can you squeeze in a nap and call it restorative meditation? A religious observance break? I'm tired just reading about your week!
I’m so sorry to hear you are having to deal with the fatigue. Me too. Have been ever since my reoccurrence of psc 2011 and I wish I had some answers as well. I don’t know how you can do it with working that many hours per week, my heart goes out to you Maybe applying for disability might be an option. Best of luck to you.
Hi, Cat Flower. Yes, the cramp relief is instant, within 5 minutes. My understanding is the body needs the salt that is lost in the damaged liver processing your food and drink. At one point we used Schweppes (the tonic drink) which works too. Like an idiot I didn’t catch the high fructose corn syrup and we drank a few cans.
Thank you all for your responses…
Dancermom / Stephen - I’ve had my thyroid checked a few times as have suffered fatigue in the past but it’s never shown up any problems. I’ve also had a diabetes test but that too has been negative. Previously I’d put it down to Anaemia but my RBC’s are fine. The only abnormality in my blood tests, so to speak, has been my raised LFT’s since September. I am seeing doc next month so will just have to be patient until then.
Maz / Maria… thank you for the info on the various diets. How have these worked for you? How long did it take for you to notice a change?
I’ll be honest, I’m not very good with specific diets as find it hard to find foods I like in the first place. I tend to stick to a core few dishes which are rotated during the weekdays. Tend to be healthier during the weekdays then weekends I find as weekends there is always someone visiting / to visit.
Thank you for replying my buddy. Your son is an inspiration. He reminds me of my high school days when I used to come home knackered and hit the sack without dinner. It took a while for the docs to pick on the fact that I was severely anaemic at the time and eventually needed a blood transfusion as a result of UC. No one in my family understood my UC… I’m glad that at least your son has your support. I know that will mean a lot to him.
And thank you for your kind words… they mean a lot to me. I’ve never let my condition drag me down before but this last year has been tough… Either that or I’m just growing ‘old’… lol
Jeff, I know that feeling all too well. In my previous role/company i suffered so bad thaf I used to have to lock myself in the ladies after lunchtime to catch a few moments of shut eye!
Now that Im an auditor I can’t really do that. Being people facing is what makes it harder as I’m working to the clients working day… With some break planned in by me as required. However these breaks can’t be too long as I have a schedule to follow.
There are times when I too come home and have to get some sleep but I consciously try to avoid that if I can as I find that messes up my sleep pattern.
I agree though… one day at a time
Thank you
Bar quitting work / reducing hours coz this is not an option. I am soon to be the only breadwinner in a home of three (Mum, dad and me).
