I’m not sure if or when this post will make it onto the website. I’ve not got a lot to say and what I do have is pretty vague and personal. But I feel compelled to write, so I’m just going to go with my instinct and start…
Leftwing Idiot’s supporting me tonight – he’s just lifted me gently off my commode and slid me back into bed. I’m sore, sick and struggling to sleep, all of which is definitely not new. For the last couple of years I’ve been managing increasing pain, sickness and fatigue. Most recently issues with my bladder have been keeping me awake – quite literally.
About a week ago I had an MRI scan of my spine following a request from my Neuro Uro. This had to take place under general aesthetic because my tics and wiggly body would’ve made it impossible otherwise – any attempt to scan me while I’m awake would produce at image so blurry that the abstract expressionists would be very jealous.
My Tourettes specialist works at the same hospital where the scan was done, and she helped make the arrangements for it. She called today to describe some of what it had shown. My Neuro Uro rang too and he gave me even more detail.
The majority of my pain is in my lower back and hips, and nothing in this area showed any surprises. What no one expected to see was the fluid on my lungs and some changes half way up my spinal cord. Neither of these issues seemed to be too much of a concern but they do mean I need to have more tests. I’ve been referred to a neurologist and to a lung specialist.
I’m clear about what needs to happen next and I don’t feel worried at all. (Mum – you don’t need to worry either.)
But I do feel something, and I’ve been trying to work out what it is. I think it’s mainly a sense of relief that they found things that can be explored further and hopefully addressed.
On the phone my Neuro Uro said that this wasn’t what he’d been expecting and that it was a mystery, but one that he was going to get to the bottom of. This felt genuine and it made me feel relaxed and well supported.
I’ve been increasingly unwell with no obvious reason for a long time, and up until now all the tests have come back clear or inconclusive. This means that having a potential explanation feels very positive to me.
The two phone calls came in the evening – both specialists were obviously working late. The time, resources and care put in to understanding why I’ve been feeling lousy has been phenomenal. For me to get to this point has required a great deal of specialist knowledge and skill. I haven’t had to worry about the cost of it and it’s been delivered with great compassion.
The NHS is under immense pressure and it’s being talked about endlessly in the press and by politicians. My most recent experience with the MRI and the nurses on the ward was incredibly positive, and that’s been largely true all the way through, from wheelchair services, the pain team, my consultant physio, the anaesthetists, the specialist clinics and my GP.
The MRI of my spine may have thrown up some unexpected questions but this is a big step in the right direction. I feel confident that in the end I’ll get some answers.
For now though I’m going to concentrate on getting to sleep, which I’m sure will be easier now I’ve got all this out of my brain and onto the page. My new MRI-based tics are certainly making an unusual bedtime soundtrack:
“MRI, Mini-buses Ramble in Ipswich”
“MRI, Mrs May Rolls In-land.”
“MRI, Mean Rhinos Implode.”
“MRI, Metabolic Rat Imposter.”
Now definitely time to sleep…