DKS

I’ve had a perfectly reasonable career with drugs. One Christmas we all ate San Pedro Cactus and watched a Starship fly towards us on a hill in Malta. We were holding hands like daisies and the wind rushed through us like fresh breath. It turned out to be Ryanair Flight 4637 but that’s what good mescaline can do for you. Even the worst things in life can look prescient and special. Sadly, since the diagnosis of IGA Nephropathy my experience with drugs has been far less invigorating. Still pretty existential. Plenty of questioning what life means and why things happen, even some desperate hand holding, but very little of the bright colours and wind swept orgies.

the first drug they put me on was Ramipril. The Doctor sold it to me by saying he had been trying to get on it for years. “Ramipril’s a brilliant drug,” he said. “I’ve been trying to get on it for years.” I was sitting opposite him. The walls were white and I was thinking of that time at school when that kid from Year 11 was saying the same thing about some soggy weed. Ramipril is the only initial treatment they offer for IGA because the disease is so rare and has no cure. The doctor told me that as well, scratching his champagne socialist beard

The second drug they put me on was Atorvastatin. Twice I made a joke about how it sounded like a small town in the Welsh mountains. Twice I got no laughs. Atorvastatin is a Statin for high cholesterol, which is a side effect of IGA. Having high cholesterol is something I never thought a doctor would say to me. Maybe everyone with a rare disease feels this way about everything doctor’s say to them? I’d spent my life basically not eating bad food and keeping fit and, at 30 years old I was going to have to eat fucking margarine for the rest of my life. I was so against taking the statin I even tried being a vegan. I felt better but it didn’t make much difference to the cholesterol levels. IGA is similar to a rave in that really, only chemicals do the trick.

Are we allowed to Escape?

The third drug they put me on was Amlodipine. Another zero fun white pill that reduces blood pressure. Mine was 150/89 a lot of the time and needed to come down. It was at this point, on these drugs, that I started to feel a genuine need to escape. To find some way of breaking free mentally. High blood pressure and cholesterol like handcuffs to this radiator of a disease. I was 30 years old and trapped in a basement and the walls were closing in. One of those walls being guilt. Guilt for wanting to escape and maybe get drunk and just forget about everything. There is a pressure when you get sick to behave in a certain way. People want to tell you how it will all be ok and how they worry about you. And you feel some deep sea pressure to only breath oxygen and drink fresh water. To maintain the road to recovery so people can walk along it behind you, not worrying and saying it’s OK.

The fourth drug they put me on was Prednisolone. Eight little white pills a day. That took my total up to 13. Three Ramipril. One Atorvastatin. One Amlodipine. Eight Prednisolone. A real breakfast of champions. The most important and disgusting meal of the day. Oh and I took a Lansoprazole to wash it all down with.  A pill to make the other pills not burn you from the inside out. And the Prednisolone will burn you. It’s designed to suppress the immune system. What is also does is blow up your face like a beluga whale and make you feel rotten. Like a rotten beluga whale on a beach of shit. Every day spent with your face dragged down by the big heavy boots of steroid running through you. This is when I started drinking again. Just two big bottles of lager and a some Johnny Coltrane on a Friday night. Sitting on the kitchen side with the lights on in the front room. No lights in the kitchen. So that the light was soft like good memories. Sitting and listening and talking to Kate on he kitchen side. The dog underneath us snoring now and then. It was these nights that kept me going and gave me something from before to hold onto. We spoke about it being a bit shit, actually, and how we were going to get through it though. And we closed our eyes and remembered old metal tables and thin cigarettes and half pints of beer and cold sunshine in France. Holding hands like daises and feeling the music rush through us like fresh breath.