A Real Renal Rollercoaster

For quite some time now I have experienced so many emotions during this journey through kidney failure. Many times I noted to myself a particular thought or feeling – and reminded myself to write it down in the blog. However, these thoughts gathered in the tens, then hundreds, then thousands. Although this blog is long, it is hopefully not that long. I have tried to summarise the key thoughts here. They say a man thinks about sex every seven seconds – well, I reckon I think about kidneys just as much – if not more!

For those of you who are kind enough to read this blog regularly, you will have noticed a sizeable break between posts. This gap in timing is, in itself, very apropos to the subject of this blogpost. The level of emotion I have experienced on my “kidney failure journey” is incredible. It has encompassed everything from fear and excitement to hope and despair. My life has become one massive paradox and the emotions I have felt over the past nine months have definitely put me on a rollercoaster – up to and including that swooping sensation you feel in your stomach when you plummet from the top! As keen as I have been to write this post for quite some time – I have also been enjoying the sense of normality I have managed to regain over the past couple of months. I was reluctant to relinquish my new sense of freedom and enjoyment of all things ‘normal’ and to delve back into the world of ‘all things’. kidney. However, I have come to realise that you definitely can’t outrun your health – and although I was trying to be happy, healthy and normal – I need to face up to the fact that – whilst I am on dialysis – I am never truly any of those things. The kidney failure and dreams and fears of transplant are never – and I mean never – far from my mind. No matter what I do, or where I go, it comes too. The anxiety surrounding the situation was beginning to grab hold of me and so I turned to my best outlet – this blog.

Many people ask me “why do you write the blog?” and “Is it helpful?” I would say that it has been extremely helpful for me. On this page, I am able to order my thoughts and establish the feelings and emotions which really matter. If they are important, I write them here. If they are not, they are dumped from my mind for good! I am able to reach out to friends, family and the ‘kidney community’ through this blog. It definitely helps me – and I hope it helps at least one other person too.

Life has marched on and many things have happened as the blogposts have kept on coming. numerous things medical – and many things of the ordinary. Regardless of the event or situation, when your health is precarious, everything does take on a ‘soldier on’ element to it. With this in mind, the one question I, and many others I’m sure, have asked on a regular basis, is “should I even continue with any of this?” That, I realise, is a very difficult question to comprehend. I am basically asking, “do I want to continue living?” My ultimate conclusion is, ‘yes, I do want to continue’. I think anybody who has faced a difficult period in their life will ask themselves this question. It is a way of evaluating life as it is now and life as you would wish it to be. Establishing that life, as it is now, is so very far away from how you always hoped it would be, ultimately leads a person to ask the ‘continuation question’. However, for me, I have always been a dreamer and curious as a cat! My nose for ‘what is around the corner?’ has made me so determined to get my health back, if I can, because I want to know what else life has in store. Will there be places to travel in the future? Great shows to attend? More wonderful people I have yet to meet? I want to know the answers to all of these questions, and more. This keeps me going and encourages me to step beyond the difficult moments. Such thinking has also lead me to really enjoy the little joys in life. I have never had such fun carving pumpkins for Halloween, playing with sparklers on November 5th – and don’t even get me started on how excited I am that Christmas is just around the corner!

When I reflect back to my time of the diagnosis, I am still shocked to recall how strongly connected my physical health and my emotional wellbeing actually were. They became entangled with one another – and I had no idea how crucial it is for your physical health  – to keep your mind and emotional health healthy also. I walked into the hospital in March, not having any clue that there was something seriously wrong with me. I describe the moment I was told I had kidney failure as being a kin to being punched in the stomach and falling off of a cliff as a result. I mean this in the psychological sense, but also in the physical sense. There was a real physical sensation to being dealt such a emotional blow. From that moment on, my physical health went off of that cliff edge too – and I became so physically weak, that I could barely move. It was as though, by telling me that my kidneys had packed in and my body was failing me, this was the body’s confirmation that it needed, to finally give up the ghost, stop fighting – and shut itself down. The physical and the emotional became so intertwined that it was almost impossible to know what I was feeling. My anxiety level was so high, I could feel it – I could taste it in my mouth. I have never been so aware that anxiety, fear, anger etc – are all physical feelings, as well as psychological experiences. The emotions become so intense that it almost feels like an outer body experience. I imagine this is a coping mechanism cleverly employed by the body and mind when times are rough – to allow us to eventually detach and rebuild.

Even now, eight months and countless dialysis sessions later – it still feels like a dream. Like this is all happening to somebody else in the most intense movie I have ever seen – and all I can do is watch – keeping my fingers crossed, like I always do, for the happy ending!

One of my biggest fears following the diagnosis, was waking up on day one. Waking up with a few seconds of ignorant bliss, before I remembered exactly what is going on and feeling that ‘punched’ sensation. I needn’t have worried however, because when you have been diagnosed with kidney failure – it isn’t so easy to get to sleep anyway!

A lot of people have asked me if I felt angry, or a sense of injustice following the diagnosis and subsequent aftermath. I must admit that, before now, I would have expected to have felt all of those things and more. However, I genuinely didn’t. I can only imagine this is because I have always been a very practical person. I, eventually, dealt with the kidney failure, dialysis treatment etc, in the only way I knew how – that is, practically. I embraced the science and the routine and let it be a part of my daily life. I genuinely never had a moment of wishing it was happening to someone else instead of me, because I couldn’t wish it on anybody. I believe that life is a lottery – and although I am not happy with this particular spin on the roulette wheel – I recognise that things could be so much worse. I can still walk, talk and function. I have built myself back up to work and play – and for that – I consider myself to be very lucky indeed. I am not saying that I am ‘little miss sunshine’ all of the time – far from it. I have had my darker moments from time to time. Moments of jealousy – when I see somebody travelling and I wish it were me. I have had times of anger – when I meet people who absolutely skate through life. People who seem to have had every opportunity in life just handed to them, but have never really stopped to consider how fortunate they really are. I want to grab these people and shake them over and over again. However, then I rationalise that we never really know what goes on behind closed doors. Perhaps everybody has to struggle in life – one way or another.

Being diagnosed with kidney failure definitely affected my confidence on the whole. Firstly, because I had my eyes opened to the concept of my own mortality. I can no longer go on being one of these people skating through life. I have been well and truly exposed to the ‘not knowing what is around the corner’ factor – and that is one big bucket of ice water! Secondly, I was so worried that I have now become ‘that girl with kidney failure’. A ‘sick person’ who must be treated with kid gloves. I have been so worried that I would be treated differently by friends – or I would no longer be invited to nights out, or theatre trips. This certainly did happen to a larger extent during the beginning few months. However, I found that the more I put myself out there, the less isolated I became. This in itself wasn’t easy – as I put myself under too much pressure not to be a ‘sick person’, to just be me. As it turns out, just ‘being me’, takes a lot of work!

Being on dialysis naturally comes with it’s own emotional challenges. Although I am a lot more used to the process now – I do still sometimes of ‘oh my gosh!’ type moments. Moments where I look at the tubes snaking in and out of my body – and I wonder – how did I get stuck in this nightmare?! I remember seeing some medical drama when I was a kid. An episode where someone was attached to a dialysis machine and I remember the horror and fear that this filled me with. It seemed at the time to be one of the worst things that could ever happen. I now know that dialysis – although it is not fun – it is by no means the worst thing that could happen. However, with that being said – I have no desire to continue doing it!

Dialysis is very rough on any person – both emotionally and physically. Being pinned down, three times a week, by transparent tubes can feel rather claustrophobic at times.

The most difficult part to explain re dialysis is – what I like to call – the ‘dialysis dip’. This is the very sudden drop in mood experienced whilst undergoing dialysis treatment. I can only describe this as a purely chemical response to what the body is going through. For me, I can be sitting, having dialysis treatment and feeling fine. Then, without rhyme nor reason, I get a sinking feeling in my stomach and a feeling of anxiety and worry just washes over me. It is not in response to a situation, story or anything I am doing at the time. It happens about three hours into the dialysis sessions and hits me as suddenly as a slap! When I am not on dialysis, I can feel okay about the idea of transplant. Then, I can have moments on dialysis where everything feels hopeless. Such a dark cloud sneaks over me towards the end and in those moments, I feel so freaked out by everything, that I would refuse a transplant if they offered it! When I used to dialyse in the morning, this horrible feeling would follow me round for the rest of the day. That was by far the worst bit about having dialysis treatment. However, I have since switched to an evening dialysis slot – the best thing I have ever done! I can dialyse, feel weird, come home and sleep… done! Then I wake up the next morning and I feel fine. It means that my ‘rock and roll’ Saturday nights involves me, some nurses and a dialysis machine – but it is a worthwhile compromise!

Having the tubes in my body does sometimes make me feel like a transformer toy! However, on the whole, I am not as bothered by them as I would have imagined. I see them in a very practical way also – and as long as I can think of them as temporary (fingers always crossed for transplant) then I can handle them being there. The thing that was difficult was the way a couple of my friends reacted to them. I remember the first time I went out anywhere, following my diagnosis. I had gone for a lovely lunch with a couple of friends. The lunch went well and we were leaving and having our customary goodbye hugs. One of my friends became squeamish and said that he didn’t want to hug me, because knowing that the tubes were there really freaked him out. I have never felt so weird and more like a freak in my whole life. Perhaps he was being dramatic – but it was the last thing I needed – and I always think about that now whenever I meet or greet anybody with a hug. Upon reflection, I should have gone the whole nine yards and whipped them out!

Kidney failure and dialysis have had their ups and downs and twists and turns, but none of that compared to how I feel about the pending potential transplant…

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Published by

mykidneyfailurejourney

Thanks so much for reading. I never know what to write in these things. I am 30, Scottish, living in London and going through a rollercoaster time of sudden kidney failure, dialysis - and hopefully a transplant some day. I set up this blog to share experiences of all things kidney. I hope this blog will continue to have a glimmer of positivity through the darker moments and that such positivity can help others too. It has helped me so much to write this blog and I thank you immensely for taking the time to read it. . Please join me on Twitter: https://twitter.com/mydarnkidneys

5 thoughts on “A Real Renal Rollercoaster”

  1. Wow, what an eloquent term of phrase you have! I can really relate to so many things you have said.
    Sadly I am much further along than you. I have had total renal failure since I was 17 & am now 57. Four kidney transplants later, I am now sadly back on dialysis, having had kidney failure 5 times.
    I wish you much love & keep fighting on …..you never know whats around the corner! I hope you get that life saving kidney soon. (I have a friend who’s had his for nearly 40 years) so you never know. Stay strong & I look forward to more of your uplifting blogs! x

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  2. Thank you so much for sharing. I am full of admiration for your courage. This information has helped me to better understand my family member, a kidney failure case.

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  3. I have followed your bogs closely, having gone through a similar experience. However I am a lot older than you and have grandchildren. You mirror a lot of my emotions but on the bright side I have just returned from a cruise with dialysis. This has opened up the world to me again. So it is not all doom and despair. I am not suitable fora transplant but at least I can have some nice holidays. Keep on with your blogs. They are great x

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  4. I can relate to your blog I’ve been on dialysis for two-and-a-half years going for the testing to be on the transplant list and I don’t have much time because I’m 73 years old but I still want to live a normal life

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  5. Hi Stacy Just read and reread your blog and need to absorb the words, I agree on the physical and emotional  issues and intertwining of them, the need to really feel what it is you are writing with all ones senses is very important and you get that right.  Me I think there is so much unsaid that I hope one day you will put it all down on paper for us all to read. Courage is knowing ones greatest fear, the knowing part is the difficult part. Your blog is brilliant and I hope others are inspired by it and that they too write there story. Love Tony

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