This is the eleventh part of a guest serial, in 770 words.
“How??”, I said, calmly… I was not calm; I was bloody freaking out! “From your shin”, Mum said. My eyes widened in horror, the thought of a needle going into my shin made every single part of my body cringe.
And honestly? It was painless. I didn’t even know they had done it!
That traumatised me for the rest of the day, every so often I kept saying, “I can’t believe they done that!”. Wednesday afternoon was busy with someone from the genetics team wanting my family medical history. The poor bloke kept running out of paper because our family is so big.
We woke up Thursday morning to discover London was covered in snow. Brilliant, not! We were due to get the train back home the next day, we hoped it wouldn’t cause any cancellations.
Thursday was MRI day, specifically brain and spinal MRI. I laid on the board, to be moved into the scanner. I was crying, the last few days were catching up with me and I felt physically and mentally drained. The nurses didn’t do anything to comfort me. I kept nodding off but woke up, at one point, to find a man injecting this coloured fluid into my IV, and it instantly made me feel sick.
“Get me out!”, I shouted, I thought I was in a horrible nightmare. The bloke looked at me, confused. A nurse tried to reassure me that it was something that makes, if there’s anything wrong, stand out in the scans. I was hyperventilating at this point; I wouldn’t have minded as much if I had of been told beforehand.
I laid back down and they moved me back into the scanner. Thankfully, I slept through the rest of the MRI and avoided any further feelings of nausea.
As we were due to go home on Friday, they tried to do a lumbar puncture on Thursday afternoon, but by the time I had come back from the MRI’s, there was nobody available to do it. I was thankful that it was delayed, I definitely was not ready for a lumbar puncture.
On Friday morning, it was still snowing heavily, which meant all the trains were cancelled. So, we had to stay an extra day. A nurse came by and told Mum that I would definitely be having a lumbar puncture today.
When the woman arrived to do the procedure, I was crying before she set it all up. In my head, none of this was normal. I was anxious as, during the procedure, you need to lay still and I’d been experiencing involuntary jerks/movements for a few months and I was petrified that this would jeopardise it.
I laid on my left side, facing Mum, she tried to keep me calm. I won’t go into detail about the procedure as, to me, it was horrible and I don’t want to relive it. I’m sure you all know what it involves. She wasn’t even halfway through the lumbar puncture before I started shouting, “I can’t do this anymore, I’ve had enough”. Mum had tears in her eyes because she knew I had been through hell and she wanted to help but she couldn’t.
Eventually, it was done. I hope I never have one ever again.
Friday evening, a man with a few students came to see me. It turned out he was one of the top neurologists in the hospital. He spoke with Mum for quite some time.
From the moment I noticed my walking ability deteriorating back in 2017, I just knew it was Ataxia. My step-grandad had Ataxia and I had all the symptoms that he had.
All the tests and scans confirmed it. I had Ataxia and severe nerve damage.
Reality hit me quite quickly and I broke down in tears. I got what I came for, answers. But I left the hospital with no further support or advice.
I couldn’t wait to get home on Saturday. Thankfully, the trains were running. So as soon as we were given the go-ahead to leave, we left in seconds. I was freezing and starving on the train journey back to King’s Lynn, Mum asked the person who was picking us up from the station, if we could pop into McDonald’s on the way home.
Bad choice I know, but I was starving. I felt so sick but I didn’t know what was causing it. The stress of all the tests? The food or lack of it? The travelling? Not knowing where to go from here?
Whatever it was, I couldn’t wait to get home. Hopefully some sleep would make me feel better.