Long time no blog!

I have been absolutely terrible at keeping this blog up to date over the past few months. I’d like to tell you there’s a really good reason for my lack of blogging but the truth is I’ve just had zero motivation. I’m finding it very hard to do anything productive at the moment. My brain cant stay focused on anything for very long, my concentration is very poor and when I think about a list of things I have to get done (such a blogging, replying to emails, making appointments etc.) I get very overwhelmed and just want to shut off from everything. It’s so frustrating, I feel so useless and I’m annoyed at myself for not being able to be more proactive. Of course this is all part of the PSC package, the fatigue and brain fog that I experience due to my PSC and hepatic encephalopathy is what is fuelling this lack of motivation but it doesn’t make it any easier to accept. I’m sure anyone can relate to this to a certain degree, it’s like when you get a bout of illness such as the flu or a sickness bug, nobody feels like doing much or finds it easy to get motivated when they’re dealing with the symptoms of an illness – this is what it’s like for me everyday, everything requires ten times as much energy and effort than usual.

Anyway, I’ve finally managed to find the motivation to sit down and write this post. So what’s been happening over the past two months or so? Well, there isn’t much to tell in terms of my health. Everything is pretty much still the same, no real changes. This is good because it means that my PSC isn’t progressing at a rapid rate or to the point where I’m in a really sticky situation, it’s still at a stage where I’m okay to be waiting for my new liver and not in desperate need of having my transplant urgently. I have to keep reminding myself of that, sometimes I get caught up in the fact that I’ve been waiting on the transplant list for a year now and I start to panic about how long that is, how much longer I could be waiting and all the things that could go wrong during that time. I have to remind myself that I’m lucky enough to not be in that sticky situation and things aren’t critical. I have to tell myself to stop worrying about all the things that could develop and go wrong and to just focus on how things are now. Of course things aren’t great by any means right now but things could be a lot worse! Although the symptoms of my PSC aren’t any better, I think I’ve learnt how to manage them a little bit better recently. Before my condition progressed last year, I was able to manage the level of fatigue and other symptoms I experienced because I was so used to them being at that same level for a few years, it’s kind of like I became immune to it to an extent but after I was very unwell last year, the progression of my disease brought with it a whole new load of symptoms as well as making the existing ones considerably worse. After a year and a half I’ve only just begun to become slightly okay at managing the level of my illness now. That doesn’t mean I don’t struggle, I’d be a huge liar if I declared that I was finding all of this easy but like I said, I think I’ve got a bit better at powering through and having more control over my symptoms. Of course that isn’t always the case, sometimes there are days or weeks when everything is just too much and I have to just give in. For example, a couple weeks ago the fatigue was so bad that I actually spent more time asleep than I did awake. I was sleeping all night through to the afternoon, then falling asleep again a couple hours later, I honestly didn’t leave my house for about a week and a half.  Some days my skin is itching so much all over my body that I can’t even fathom the thought of putting regular clothes on and going out in public, its just too uncomfortable! Some days I plan to get up at a reasonable hour and go out and do something, then when morning comes I can’t physically get out of bed and the next thing I know it’s 3pm and I’ve slept half the day away. It sucks when things are that bad and especially when it goes on for days or weeks at a time but I have to just give into it, I don’t even have a choice. When I do experience those bad phases where all my symptoms are out in full force it makes day to day life a real struggle and I feel so far away from any sort of ‘normal’ existence, it can make me feel really isolated and alone which I know is really stupid because I’m surrounded by such a wonderful family, boyfriend and friends who are always there if I need them but the truth is that no one fully understands or can relate to any of it, that is no ones fault, I don’t blame anyone for that or feel any bitterness towards anyone because this is just one of those unique situations that people can only relate to if they’ve been through it themselves.
These bad phases are really  the only thing that brings me down. It’s so difficult and frustrating when you’re unable to function as a normal human or participate in the most simple daily tasks, these are the times where I spend 90% of my time wishing and hoping that the phone would ring and my transplant coordinator is on the other end of the line telling me that they’ve found a liver for me. The fact is that that day is probably still a long way off, I still haven’t reached the minimum average waiting time of 18 months yet.

It’s not all doom and gloom, although I realise I’ve made it seem that way with what I’ve written so far! With all that’s happened over the last year and a half I’ve actually become a much more content and happy person. Without the risk of sounding really cheesy and cliché, my whole perspective on life has changed, as have my priorities and views on what’s important and what really matters. I used to spend so much time wanting more or wishing my life was different, I was never happy with what I had. This whole situation has taught me to be happy with what I’ve got, to be grateful for every single little thing in my life no matter how small or simple it may be. I might not be doing all things I want to be doing as a 25 year old and it may be a long time before I’m able to but I am thankful for everything I’ve got, I know how to make the most of my life even though it is somewhat restricted and I have actually never felt so content. It sounds a bit mad when I say there are perks to having a life-threatening condition but there are! And this positive outlook on life is one of them. Too many people are caught up in striving to be something or too busy working hard to achieve something that they forget to stop and be thankful and happy with what’s right in front of them, too busy to see the good things that they’ve already got that they become unhappy and discontent with life and trick themselves into believing they’re a lot worse off than they actually are. While ambition and working hard to achieve goals are things that always have been and always will be important to me I now know that they’re not as important as seeing the good in each day and making the most of life with whatever you have. Another massive cliché but life really is too short to sit around wishing things were different, especially when you can’t do anything to change the situation you’re in.

ANYWAY, enough about me and all of that! Let’s talk about the really important stuff!
Next week is National Transplant Week here in the UK, a whole week dedicated to promoting organ donation with the aim of getting more people to sign up to the organ donor register and to let their loved ones know their wishes. This year NHSBT are encouraging people to #spellitout to their loved ones when they join the organ donor register. Lots of people have already posted their ‘Spell it Out’ pictures and its great to see all the different ideas that people have had, some of them are really creative! You can view them HERE. Obviously I have contributed, it took me a while to decide how to ‘Spell it Out’ but after much thought I decided to go with this idea…
10458649_10154340442815311_3200189128919370852_nIf you support organ donation LET PEOPLE KNOW and #spellitout, post your picture on social media and see if you can inspire just one more person to think about the importance of organ donation and maybe even register to be a donor and obviously if you haven’t yet signed up to the organ donor register but you want to, now is the perfect time! https://www.organdonation.nhs.uk/
Another thing you can do to show your support for organ donation during transplant week is to add a Twibbon to your Facebook and Twitter profile pictures. It’s an easy way of letting people know about transplant week and once again encouraging people to think about the importance of it. You can add the National Transplant Week Twibbon to your profile pictures by visiting: http://twibbon.com/support/national-transplant-week
Please do all you can during transplant week to promote organ donation and let everyone know that you want to be an organ donor!
I will be at Musgrove Park Hospital in Taunton next Wednesday and Thursday with the wonderful Martin who is a living donor, super organ donation campaigner and all-round superman! We will be donning our transplant week t-shirts, handing out leaflets, trying to get as many people to sign up to the register as possible and just doing our best to let people know how important organ donation is and the impact it has on anyone who is affected by it.

One little announcement before I finally end this post. Some of you may remember that a few months ago I was featured on Charlie Taylor’s BBC Somerset radio show. We have been in contact since then and he has asked me to go on his show once every two months or so to do a sort of radio version of my blog. This is a great opportunity for me to promote organ donation even more, to give listeners a chance to understand what life is like for someone living with a life limiting illness and waiting for a transplant and also raise awareness of Primary Sclerosing Cholangitis. I hope that by talking about my life and the reality of dealing with these things on a day to day basis I will be able to make more people aware of the shortage of donors we have in this country and the impact that has on so many people waiting for transplants, I hope that people will understand how important it is to consider joining the organ donor register and I hope to make organ donation less of a taboo or morbid subject to talk about. I’m really grateful for this opportunity and I’m looking forward to seeing how it goes!

So that’s it for now, I hope to post more regularly from now on so watch this space.

Thanks for reading x


2 thoughts on “Long time no blog!

  1. It’s nice to hear from you again. I’m sorry you’re struggling so much with energy and fatigue. I do at times to. It sucks but the bright side is that eventually we do get some back.

    about the encephalopathy, have you tried xifaxan? I just recently started that and it is doing wonders for me. I haven’t gotten lost at the grocery store or looked for the toilet in my craft room since starting it. Lol 😉 I believe it’s also helping me with energy as well.

    I’m so happy that you still have such a great attitude. I too have a different perspective on life since the diagnosis. It is a blessing. It’s much nicer to appreciate and spend more time worth what’s really important I.e. family and friends than chasing after material things that we all think we want or need.

    you are still in my daily prayers. Keep on keeping on 🙂

  2. For sure we all have those days though yours are especially more difficult and it so great to hear you have your family , boyfriend and family around you to support you. I can see where your strength comes from in reaching out to others via the post on National Transplant Week .
    Bless you .

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