Thanks heaps for all of your responses to my first (ever) post, it definitely makes me feel like I'm not alone in all of this...
Just wanted to give you all a little update on where I'm at... I've resumed work at a massively reduced amount of time, just 4 hours a day Mon, Wed & Fri and can I just say, I was WRECKED after the first week.. However, I have kept pushing myself, resting after work & on my days off, and am starting to feel like I am regaining some control over my life... Am gradually increasing my hours with the goal of returning to what I previously did.
I also spoke to a counselor, who has given me the advice (that I'm sure I have also heard from some of you on this site), that I need to value each day, value the important people & things in my life and rid myself of the toxic rubbish that creeps into all our lives... She also said I need to accept my disease (trying hard to do that) and not be defined by it... all very interesting.
Last Friday, I had a Nuclear medicine scan just to double check my Gall Bladder function, to see if it is working effectively & check that there is no sludge & no stones.... will let you know when the results come back... Also, had a full set of bloods done, LFT's all good, FBE & Iron studies all good, INR good, Vitamin D REALLY REALLY low!!! So now on daily dose of Vitmain D, but having said that, I have always been a quite deficient so whether there is any real connection to PSC, who knows, or maybe it's always been low because of it??
Anyway, that's me for now... I hope everyone out there in this great group is doing ok?? Sending best wishes & positive vibes to each & every one of you...
Good luck in accomplishing what you are wanting to do. Having a goal helps. It also helps us stay focused, and like you said, in control, which is tough to do on some days for us pscers.
Thanks for the update.
Sounds like you are holding your own and your blood tests sounds great. Great words from your counsellor.
Hmmm- Perhaps learn about the big picture implications of dropping hours in terms of benefits and program eligibility.
I am post transplant and made some mistakes in this area…
Hope you continue to move forward and build up your stamina.
Thanks for your positive update. I was diagnosed with PSC April 2013, by a random blood test. Fortunatley I am at an early stage. I found out the diagnosis literally the day before I was to leave on a short term mission journey to Thailand, I came very close to cancelling, thank God I did not and still went. Like you, since the dx I have been really looking at life one day, sometimes one moment at a time. Staying as positive as I can and look at all that is around me and enjoy it all. The fatigue is rough at times, (we can all relate to that) and I have begun to itch again, but it is all good and God is in control. Thanks so much for sharing Erin, it is wonderful to have this group where we can each support each other.
Thank you for the update Erin! I'm so glad to hear that you are regaining control of your life/health (",). Everyone here knows how difficult that can be at times.
I was in a very similar position recently when I was off work for two months during a UC flare-up earlier this year. It's taken me nearly three months to get myself back to work 'full time' and even now I struggle with the tiredness... So I know exactly how you feel. It does get easier though as the stamina returns.
It's good to have a goal but just don't push yourself too hard. Listen to your body. To be fair, it sounds like you already are (",) Keep up the positive attitude! Best wishes... Priya
Nice to hear from you all - Hope all of you are doing ok??
Just as an additional note to my original post, I started Yoga on Thursday evening - ahhhhh.... Bliss!! Nice, gentle stretches, and such a wonderful feeling to quiet my mind & turn everything off for a little while!
Next week, I am increasing my hours at work (just by one hour per day) to 6 hours Mon, Wed & Fri, and after two weeks of that, I will be taking 3 weeks off.... No real concrete plans, just going to chill out & do things for me- fitting that in around my little girl being dropped off/picked up from school of course... :)
Anyway, I am concentrating on living life to the fullest & living in the NOW - Valuing every day & every moment & ACCEPTING the disease that none of us have chosen... We can't fight it, so we have to accept it & live with it!
Take care all of you - will chat to you all again very soon - sending positive energy & best wishes to you all...
Glad to hear you are feeling better. Great that your LFTs are down.
Yoga sounds wonderful, something I have been considering myself. Enjoy your holiday and spending some extra time with your daughter. Hope you don’t mind the cold weather we have been getting!