My Bed is My Island and My Dialysis Machine is My Raft.

I have been on Home Peritoneal Dialysis for the past 2 years now and what a lonely experience it is. To me it feels like a unique kind of loneliness because it is not one out of choice, but one that has been seemingly thrust upon me yet somewhat self imposed. Self imposed because the burden of setting up the machine and getting through the night is on you, and the emotional baggage and complaints can only be outsourced to so many people before you feel like no one is listening other than the person that you pay.  

In all honesty, over time it does not really affect me as much as some might think but on some nights you are left lying on your back watching the bubbles in your supply tube shoot into the cassette and think “Wow, I’m pretty lonely, I haven’t left the house or spoken to anyone new in a while”. There are days where I really begin to think I am at risk of becoming completely disconnected with reality and I feel a little desperate to connect with someone else.

So this is me, on dialysis, late at night trying to connect with someone else in the world. Is there anyone out there listening?

My dialysis regime starts in the early evening around 7 or 8pm, where I clear and reset my machine, normally whilst listening to a podcast, tv show, youtube, or audiobook. I cycle through a lot of streamed content as probably all other dialysis patients do too! From setup to connection, I am starting this 12hr ritual of time alone.

At the best of times, it often felt that my bed became my deserted island and my phone was my magical mirror that could show me whatever I wanted. For long stretches of time, I could spend hours lying down on my bed, leisurely using my phone to watch, read, listen to whatever I wanted whilst on dialysis. The hours of therapy trickled by and overall it would be quite a pleasant experience, minus the early days where I had horrendous drain pain. But, these were the best of times and they didn’t last forever.

As the months and years slipped by, my mind would begin to wander despite whatever the magical mirror had to offer me that night. Eventually, a wandering mind led to stormy and darkened thoughts and eventually loneliness. A true sense of loneliness, existentialism and sadness. When I was alone in my room at night, on dialysis, separated from any reality other than the one within my 4 walls of my bedroom. All I could feel was this sense of being trapped and chained to my bed by the tubes of my dialysis machine.

Nostalgia can be a dangerous thing. In an effort to soothe myself, I would think of happier times, holidays, achievements and funny memories. I would replay them in my head like an old VCR tape on repeat. However, overtime this really ended me weeping most nights. I remember when I tried to stretch my mind to the future, all I saw was black. These were the darkest of times. I would lie down awake staring at the ceiling in bed listening to the whirring of my machine and watching cycles count up to 4 of 4. Only feeling at peace and relax my eyes when I see the Final Fill, only to have the soft light of the next day warm the back of my eyelids.

It is these diametrically opposing experiences that made me feel that home dialysis is like living on a deserted island. You go through those strange existential questions and doubts about life. I feel like I am generally a happy person by nature and I use my magical mirror to keep myself entertained, keep me somewhat updated about the world out there and make contact with the outside world. I even do my best to reach out to others off my island much like messages in a bottle via social media, video and phone calls but at the end of the night, I am always alone on my bed connected to my machine, which whirrs away in the background.

I am blessed with a wide supporting network of family members, friends, work colleagues and the many branches of my medical team but it is always me at the end of the day hooking up to dialysis and getting through the night. Sometimes, it is not  always about not having people in my life but the lack of opportunities to express myself and have new experiences. I find I withdraw into myself more and more from others as this becomes my everyday reality. I am someone in their 20s but I find it difficult to relate to anyone of the same age.

This is something that is often missed out about young people on dialysis, we do not have established careers, families and sometimes even friendship groups by the time we have started dialysis and so everything is in both a state of flux and stasis.

It is here where I can only empathise with other young people on dialysis like myself who feel that extreme sense of fear of missing out and melancholia of the quality of life we lead.  I think the onset is almost inevitable when so much of your time is so decidedly taken away from you and that is whether you perform sessions on HD or PD!

I’m struggling to find an end to this piece, I wish I could end it happily but if anything what I have displayed is a very true reality of my ongoing adjustment to home peritoneal dialysis. I’ve learnt not to dwell on the past as much as I did in my first year and much of that is combated with being more fit and having the energy to plan and create more new memories. Existentialism is something I still struggle with and I continue to pay someone to listen to that struggle but I’m no longer fighting alone in the dark battling all forms of myself and my perception of other people’s shadows in my head.

I try to stay positive and be thankful for what I have and all the interests that keep me going. I try to value the now and have learnt to feel happier coming off dialysis in the morning. To be able to get up and walk around and go say hello to my parents and carry on with my day until the night comes again.

As much as my bed is my island and the four walls of my bedroom are the inescapable sea that I cannot venture beyond. I know that it is my dialysis machine that is keeping me alive and tethered to this world. It is my raft as rickety and noisy as it is, it can’t take me away from this island but it keeps me afloat to see the next day.

I hope I haven’t bummed anyone out as that is not my intention. Yes dialysis is hard but it has become my new reality and I am doing my best to make the most of my time on it. I try to hold onto my deepest darkest fears and only peek at them occasionally and not let it take away from the opportunities that greet me each morning when I disconnect.