A boring little update.

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Well, once again it has been a good while since my last post. I feel like I’m beginning to start every post saying that but I’m going to try my hardest to start getting back into the swing of posting more regularly. The truth is, I’ve really lacked motivation the past month or so, I just haven’t had any real desire to write so I haven’t! Plus, there hasn’t really been much to write about in terms of my health since my last post.

December was a busy month for me, as it is for most people. I had a few opportunities to meet up with friends who I haven’t seen for ages, family get-togethers, a three day trip to London with my boyfriend, Christmas shopping and obviously the usual Christmas celebrations. I really pushed myself to power through my fatigue and other symptoms so I was able to do as much as possible, which wasn’t easy but I’m so glad I did because I got to do so many lovely things and spend time with so many wonderful people! By the time Christmas came it did start backfiring on me a bit and I paid for exerting myself by feeling pretty lousy on Christmas day and sleeping the whole way through boxing day and night…a small price to pay though and I still managed to enjoy Christmas with all of my family.

January 5th marked the 6 month point of me being on the transplant waiting list. Nothing much has changed with my health since my last post. I’m still on rotating antibiotics to try and keep the cholangitis infections under control which seems to be working. I’m still trying to manage my symptoms as best I can but at the moment I’m quite fed up of it all. The main issue right now is sleep reversal – I am literally getting to sleep at 6/7am and sleeping until 3/4pm every day and it’s starting to WEAR ME DOWN! It’s so depressing getting to sleep as everyone is going to work and waking up when it’s getting dark outside. I’ve tried so hard to break the vicious cycle by forcing myself to get up early even after getting to sleep at 6am but then I am so extremely tired during that day that my body literally doesn’t allow me to stay awake, so then I end up sleeping half the day and not being able to sleep again at night. I’ve tried taking sedatives at night that have been prescribed by my doctor to help me sleep, they used to help but they aren’t doing a thing any more! On top of this my itching is out of control again (head to toe like I have been rolling around in itching powder) which is exhausting in itself and really doesn’t help in any way when you’re trying to relax and get to sleep. I have no idea what else I can do with regards to the sleep reversal, if anyone has any ideas or has experienced this before due to hepatic encephalopathy PLEASE let me know anything that you think might help before I lose my mind!

Okay, putting that little rant to one side there isn’t much else to report. I don’t want my posts to become predictable and samey so I’m going to try and do a few different things on here over the next couple of months. I have a couple ideas but if anyone has any suggestions or anything you’d be interested in reading about with regards to transplant, liver disease or organ donation please let me know, ideas are welcome 🙂

Sorry for the really boring, badly written post but I thought it would be a good idea just to do a short update. I’ll leave you with a few pictures of what I got up to over December.
Thanks for reading x

Image   1476541_10153586672945311_1698021912_n 1499479_10153595452925311_1497713940_n          IMG_0296    1486610_10153643598880311_1286144968_n       996999_10153643628300311_1961970264_n  1551616_10153714483260311_1345660197_n IMG_0409 photo 1   photo 2photo 3

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4 thoughts on “A boring little update.

  1. Hope you don’t have to wait too much longer, I had a liver transplant 13 months ago for PBC and I feel brilliant now
    Fingers crossed you get the call soon x

  2. Hi Maxine,

    Just wanted to drop you a message to say how reassuring your blog is – I’m 25 with PSC too, currently on rotating antibiotics but struggling to keep episodes of cholangitis at bay and so starting the work up for transplant assessment. Was thinking of starting a blog as a way to keep a track of the journey and update friends, family etc and as if by magic…stumbled across your site and you’ve inspired me to get on with it ASAP 🙂 it’s so nice to find somebody a similar age going through all this too! Am keeping my fingers crossed that you stay as healthy as poss til your time for transplant comes, and if you ever want to swap stories/need a bit of support then I’m always here 🙂 (once I get my own blog running I will post you a link as well) Keep smiling, you’re doing a brilliant job.

    Jess x

    1. Hey Jess, so glad you’ve found my blog helpful and it’s inspired you to start yours 🙂 that’s great!
      Sorry to hear you’re finding it hard to combat the cholangitis attacks, they’re certainly not fun!
      Where are you based? Where will you go for the assessment?
      It’s always great to hear from other people in the same boat, especially someone around the same age like you said so thanks for getting in touch 🙂
      Definitely link me to your blog when its up and running!

      Hope you’re good x

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