Article by kidney patient Keith Bucknall, first published in November 2019 in Issue 7 of our Kidney Matters magazine.
The term ‘black dog’ was first used to describe feelings of melancholy by Dr Samuel Johnson, the creator of a Dictionary of the English language, who suffered from clinical depression. Johnson called his melancholia ‘the black dog’ in conversations and correspondence with his friends.
I've had a similar black dog for many years and have managed at times to keep him under control, but on other occasions he slips his lead and plays havoc. At those times, the song 'Rainy days and Mondays always get me down' comes to mind and reminds me of earlier times when it was just a song and things didn't get me down. It's strange to think now that when I am on dialysis it is the sunny days that get me down the most because like the black dog I am also tethered, however in my case to a machine that keeps me alive!
Dialysis week after week is relentless, add to that tiredness, that seems to jump out at any moment shouting 'energy levels now at critically low level', leaving me adrift with no energy to fight back. The ticking clock on the wall on dialysis days seems to run very slow, I try to fall asleep to help time pass but for some reason even this is difficult. My black dog fights and seems to want to chase my thourghts around my head like so many fluffy sheep. My left arm, the one with the fistula may be static but my mind is mulling random stuff over and over. Some dialysis patients have restless legs, I have a restless brain.
I have tried distraction but I can only throw the ball for my black dog so many times, he looks at me as if I am mad, so I switch my iPad on and try to immerse myself in some random YouTube video. I have watched opal polishing, gold digging, fish farming and lots of music videos. I enjoy watching medical programmes, I suspect because the people I am watching are far worse off than me, which makes things appear better for a while. My mobile phone is also a great asset but every time it rings I think it might be the Transplant Team telling me they have one for me. Sadly, most times its someone explaining that my Windows computer is broken and needs urgent attention even though I need a Mac!!. It reinforces the emotional roller coaster that is renal failure and reminds me of my childhood when people were described as 'living on their nerves'. I now know what they mean.
A refreshing break
I am grateful for the two cups of tea, one at 2.00 pm and one at 4.00 pm that help mark the progress of time, and sandwiches made in the hospital. Both myself and the dog enjoy these, and I nearly forgot the biscuits. For some reason, the food and drink tastes better whilst tethered, maybe I grab every molecule of flavour and savour each bite or gulp. I have found that dialysis seems to have stolen much of my sense of taste and smell. Don't know why.
The staff are always patient with my black dog and allow him to pace around the room, while I try to ignore him for a while. He, like me, cannot go 'walkies' and so both of us seem to have developed special bodily function control. The machine is removing fluids so weeing is not such an issue, but after eating I am occupied for a while working out what my tummy is trying to tell me.
I could do with a black dog trainer, I have actually reached out to the Mental Health part of the NHS and they are providing me with cognitive behavioural therapy support and mindfulness
It's not something I have something I have had to do often in the two and a half years of dialysis. In fact I think the count stands at two disconnects so I could do a loo dash with pipes taped securely to my wrist. the memory of the relief is still vivid, my black dog growls with satisfaction.
I am not alone in this, my colleagues who dialyse in the afternoons of Monday, Wednesday and Friday I am sure go through their own stuff, well I know they do because we share. Of course what happens on dialysis stays on dialysis.
I have already mentioned how the staff seem to instinctively accept my black dog, they are kind and caring and do all they can to be there for us. I could do with a black dog trainer, I have actually reached out to the Mental Health part of the NHS and they are providing me with cognitive behavioural therapy support and mindfulness. I have only just started and I am procrastinating by writing this article, but I think some bits may help in becoming less bothered by the dog, and one day maybe he can stay at home.
I have to finish, my transport will be arriving in a moment to take me for the first of this week's sessions, for those on dialysis I send a knowing nod and my best wishes, For those of you with loved ones going through this, thank you for your understanding, tolerance and strength, all of which is much needed.
Jumping out of planes for a great cause!
How Harlow Dialysis Unit East and North Hertfordshire Trust raised funds for Kidney Care UK