An unexplainable, mindscrewing, topsy turvy situation to be in.

Today I am feeling particularly frustrated.

I’ve been on the liver transplant waiting list for over 4 months now which is no time at all considering my wait could be anywhere between 18-24 months. It is the most queer situation to be in, one which I cannot really describe. As I’ve mentioned in previous posts; I have a positive outlook on it and see it as a good thing. It’s something that I need and I am lucky that I have been given the hope of getting better, of having another chance but all of that doesn’t stop it from being a completely surreal, unexplainable, topsy turvy, mindscrewing situation to be in.

I just spent the last two hours writing a post trying to explain how it feels to be in this position but it all ended up just sounding like a load of old trollop written by someone who is extrememly good at overthinking things – a pretty acurate account then. It’s really difficult to get across just how weird this ‘waiting’ is. In my failed attempt I talked a lot about how it’s like living between two different places. One place is familiar and comfortable, the other is alien and bewildering. Living between both means that there is usually a balance. What I’m trying to say is that I’m able to get on with my life without being constantly obsessed with the idea of what I’m facing but the familiar things are slightly impacted by the fear and the enormity of it all, sometimes in a good way and sometimes in a completely ridiculous way. Overall, I guess I’m just confused by what I’m feeling at the moment and when i’m confused I over think everything. I apologise for this post because it’s going to be sporadic. It’s just my way of getting it all out of my head with the possiblility of communicating how it sometimes feels to be in this limbo. I really want to stress the ‘sometimes’ in that sentence because I don’t spend every day over thinking things like this. I think I may have lost my sanity by now if that were the case.

I’ve been trying to work out if I’ve fully accepted what’s going on. Part of me thinks ‘duhhh, how could I not have accepted it?!’ It’s been 4 months, I talk about it all the time with ease, I have no problem sifting through all the information I’ve been given and discussing it with other people, in fact, I quite enjoy talking about it! But how do you even begin to know if something has sunk in completely? What signs are there to tell you that the immense reality of the situation you’ve landed in has been processed by your brain and you are living life in full acceptance of that reality? I’m starting to think that the reason I talk about the transplant so openly and so often is because I’m trying to drill it into my own head, I’m trying to make it matter of fact… I am trying to force myself to accept it. I don’t know if that will ever happen, I think I’m just likely to stay in this state of ‘trying to accept it’ until it actually happens and then BOOM!.. suddenly I will have no choice but to face it head on and suck it up and let them cut me open!
It’s weird because I can talk about it all in depth, even the scary bits and I don’t get upset or feel fearful when I’m talking about it. I can go days and weeks without feeling much about it at all and then suddenly, the realisation of the massive hurdle I’m heading towards comes along and smacks me in the face and I have what I can only describe as a minor break down, out of nowhere! And I just want to scream at myself or give myself a slap and say ‘get a bloody grip woman!’ but I don’t. I let it happen, I have my funny five minutes and then I move on. Luckily it doesn’t happen that often but I’ve decided that I’m allowed to let it happen because I’m human and contrary to popular belief, my heart is not made of ice. I do prefer it if this happens when I’m on my own though so my ‘hard as nails’ reputation isn’t completely shattered, obviously. Usually it’s my boyfriend that has to witness the ugly truth of it all…poor Josh, he deserves a medal!

The emotional turmoil that comes with this waiting is pretty extreme and can be completely draining if I’m in a place where I can’t focus on much else. I’m anxious about the transplant and all that comes with it. I’m obviously nervous about what could happen, it’s a huge deal and there’s a lot that could go wrong, not just in the surgery but afterwards too. I’m scared that I’ll come out of it worse than I went it. I’m scared of not feeling prepared or ready when it does happen. At the same time I’m hopeful that it will all go well and will benefit me in the hugest way possible – at the end of the day I am hoping to get my life back! With that hope I am also excited to feel well again afterwards and I’m weirdly excited about the day I get my call, that kind of nervous excitement that comes from a concoction of fear and joy. I feel guilty for burdening my family with all of this and putting them through something that not many people could imagine having to face. And then there is the guilt and sadness I feel about being given a second chance at life through someone elses misfortune. I can’t talk about that too much because it is something I’m still trying to get my head around.
You can see how it can be draining right?
I class myself as lucky because some people who are waiting for a new organ are in such poor health and their every day life is so comprimised by their illness. Yeah, I am unwell, my health is pretty poor, I battle with the symptoms of my disease every day and I have no idea what ‘healthy’ feels like any more but I’m not so restricted that I can’t get out and about, I’m not spending considerable amounts of time in hospital like some. I’m able to spend precious time with my family, enjoy days out and seeing my friends when I can etc. Some people are waiting for a transplant and until they get one they are barely living. But some of them won’t make it. Three people die every day whilst waiting for a transplant simply because there are not enough donors. Not enough people who are willing to save lives. To me it doesn’t make sense. Would you save a life if you could? Would you help improve the qaulity of life for a child who is unable to go out and play, a teenager who isn’t able to work towards their future or an adult who can’t provide for their family and may not see their children grow up? If you’re sat there now thinking ‘yes of course I would!’ then please sign up to be an organ donor NOW because one day you could save a life or make a huge difference to someone who is barely able to live their life. If you do decide to sign up, it is fundamental that  you make your wishes known to you loved ones. It will be their decision ultimately so make sure they know it’s what you want.
Last night I watched a really interesting documentary about organ donation from the BBC. It follows pretty much every step of the process and gives insight on how the death of one person can be the start of life for so many others. If you are interested in organ donation or transplantation at all or want to know more about how it all happens then this is definitely something to watch…

I’m still not sure I’ve managed to get across what I’m feeling but whatever, I’m tired.
Thanks for reading x


5 thoughts on “An unexplainable, mindscrewing, topsy turvy situation to be in.

  1. “I have no idea what ‘healthy’ feels like any more”

    That says so much. And unfortunately, I can relate to it. When I reply to people that ‘I’m fine’ when they ask, what I really mean is: My pain is managed at night with painkillers so I am able to sleep and I am able to work three days in a 7 day period and only be tired to the point I need 4 days to recover – which nets me one day I can just relax.

    ‘Normal’ for me is – from what I can remember – like having the flu for a normal person. I’m sure with you it is even worse. You can always moan to me. Just shoot me a FB message or email. Happy to chat or moan together.

    1. Yes Mark! Fluey/virusy feeling is what’s normal for me too (on a goodish day), then with the extra dollop of HE, itchiness and other fun stuff along side it! Are you still constantly struggling with your pain? That’s been a big issue for you for a while hasn’t it? I hope you always make the most of your one rest day, it’s so important to give in to everything and just rest when you have to.

      Thanks, I may take you up on that moan/rant offer in the near future haha and same goes to you! I’m happy to listen or indulge in PSC bitching (im quite good at it)

  2. Maxime,
    I just wanted to let you know that I love the way you write and express your feelings, it’s really very nice.
    My boyfriend has PSC but he doesn’t need a transplant yet. Reading you helps me to understand what the future might hold. Thanks for sharing how you feel, I love the way you look at things and your strength. Xx

    1. Thank you!
      Sorry to hear your boyfriend has PSC too, you’re right in saying ‘what the future MIGHT hold’ because he may never be in a position where he needs a transplant. Some people go their whole lives living with PSC and it might not ever come to that point. It’s very unpredictable so best not to worry about what might happen and just enjoy making the most of life now! There’s lots of support out there for PSC patients and their families, are you part of any support groups or anything?
      I hope you and your boyfriend are both well x

    2. Thank you very much for your kind words! I hope your boyfriend is well, remember some PSCers never end up needing a transplant, some live with PSC their whole lives with not many issues so don’t worry yourself too much about what the future might hold (easier said than done, I know)! However, If it does come to that point there is so much support out there and so many stories from other patients that will reassure you that transplant is a wonderful thing and for many it’s a bright light at the end of the tunnel! X

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