My Story (Part 3)

The 4 hour ambulance journey from Manchester to Romford left me feeling like I’d gone 10 rounds with Mike Tyson. My muscles ached, my joints were on fire, my head pounded. I was in serious pain. But as I was wheeled on a bumpy gurney to the Professor Findley's Specialist ME Unit’s ward at Old Church Hospital, a few things hit me straight away.

The ward was very dimly lit. Tick.

The 6 bed ward was very quiet and closed off from the noisy Nurses' Station. Tick.

There were 2 people laying very still in beds with eye masks on. Other Very Severe ME Patients, battling Light Sensitivity. Tick.

For the first time, I started to believe that I might actually be about to not only come face to face with other severely affected patients but also that extremely rare, and to this point seemingly mystical, breed of medical professionals who actually understood Severe ME. That was the grown up, positive, hopeful me. Unfortunately, when Andy had finished filling out all the necessary paperwork and settled me in and it was time for him to head back to Manchester, I learnt that he would not be able to visit me for 2 weeks (The Unit’s rules to ensure the patient’s scarce energy is saved initially for tests and sessions with members of the Specialist Team). That was when the terrified, baby me came out to play. I sobbed in his arms, clinging to him with all the meagre strength I could muster, begging him not to leave me there. A few years down the line, when we were in a much better place, he told me that walking out of that ward, leaving me cowering on the bed like a wounded animal, whimpering and crying out his name, was the hardest thing he had ever had to do.

But as I watched the ward door close slowly behind him, I knew, right there and then, that I had a very simple choice. Continue to waste precious energy sobbing or somehow find the inner strength to dig deep and somehow survive this. I knew there was no magic bullet cure for Severe ME but I closed my eyes and asked my passed away Dad, the only other man who had ever made me feel safe, to help me find the courage to face the coming weeks and get the most out of my time with Professor Findley’s unit so that maybe, just maybe, I could go home with a clear recovery road map. And when I opened my eyes, there was Heather, one of the team’s Occupational Therapists, standing in front of me, kindly smiling down at me, as if sent by my protector above:

“I know how scared you must be, Catherine. Feeling like you’ve been left here all alone. But you aren’t alone, I promise you. We are all hear to help you…and we will…because we understand Severe ME, honest.”

She then gave me a big, but incredibly, gentle hug and left me with Irene, one of the older auxiliary nurses who compassionately and gently spoon fed me my dinner in silence, as if I was a tiny, injured bird whose wings had bneen broken. 

So Ward B1 became my new home for 6 weeks. And I met many new people whose job it was to look after me. All specially trained by Professor Findley, all working with Severe ME Patients day in day out. One of the only Units in Europe with this level of expertise and understanding. And I was here. I knew how lucky I was. Unfortunately that didn’t stop me being utterly petrified that first night. Especially as I quickly realised that the patient next to me was catheterised as well as being terribly light sensitive. I had honestly thought it impossible for anyone to be more severely affected than I had been, but in the bed right next to me lay Gareth, who proved me wrong; just 23 years old, a 6' previously fit and healthy rugby player, now unable to sit up or walk even a couple of steps per day to a hospital commode.

There and then I realised that there were different levels of hell experienced by Severe ME patients, and my hell had not been the worst.