So, on to my admission to Professor Findley's specialist ME/CFS Unit in Queens Hospital, Romford Essex.
It was a Monday morning in February 2000 when we heard I had a place; another Patient had had to forego theirs as they were simply too severely ill to make the journey. When my husband told me, my emotions went wild...on the one hand I was ecstatic to finally be on my way to get some much needed, specialist medical help...but christ I was scared, really really scared.
I had been bedbound for over 2 years. My recovery had only just begun. I had only just come out of the hellish light sensitive phase. I could only walk 8 paces to and from our bathroom 4 times daily. I could not sit up. I could only talk in whispers. I was still being spoon fed. I had a huge hole cut out in the backside of my pyjama bottoms because when I finally made those 8 paces to our loo, I was simply too unsteady and weak to pull down my PJ bottoms. I had to have ice packs on my legs and arms 3 times daily to try and ease the pain. How the hell was I going to manage the 4 hour journey from Manchester to Romford?
For the next 3 nights I remember waking from my usual 4 hours of broken sleep in a cold sweat, shaking from head to foot, sobbing my heart out...that's how terrified I was; it was only the loving arms of my husband which could calm me down; as soon as he heard me crying in the middle of the night, in he would rush to comfort me (we had not been able to share a bed for 2 years as my constantly jerking limbs would wreck his sleep and at times even the slightest touch from him, my limbs would burn with pain for hours). Deep down I knew I had to get to this Specialist ME Unit but how would I find the strength?
Thursday morning arrived. Spoon fed by my husband early. Desperately trying to keep breathing slowly to stay calm. 9am, the ambulance arrived. Carried from my bed, strapped into their chair, down the stairs they carried me, past my mum and mother in law, both there to see me off, before they too headed down the motorway separately with all my bits and to drive my husband back from Romford that evening.. I remember feeling our mums' strength, seeing the fixed smiles on their faces, the two of them desperately trying to mask their own fears as I was carried into the ambulance.
Many months later, my mum told me she could barely stop herself from fainting with shock when she saw me...in my dimly lit bedroom, no one had really been able to see how ravaged my body had been by this illness. At 5'10" I had always had a healthy, athletic build, about 10-11 stone; down at Romford, I discovered I was down to 6.5 stone. My mother told me, voice breaking, that when she saw me, being carried down the stairs by the Paramedics, I looked like the news photos she had seen when she was a child, news photos of the emaciated survivors from Aushwitz.
The journey was a nightmare; laying down yes, but limbs, joints, muscles so sore from the motion of the ambulance, my head throbbing, my neck in terrible pain. Again, it was only Andy's presence that kept me calm. 2.30pm we arrive on Ward B1, Queens Hospital.. I have never been more terrified in my life. And here I would stay, alone, without my Carers for the next 6 weeks.
What lay ahead of me I had no idea. Did we make the right decision in bringing me here? Would this Unit be able to help me? The short answer is yes, but I am out of time now for this week's posting but if you take one thing away from this part of my story, please do remember that moving a Severe ME Patient anywhere is a nightmare for them. Even the slightest movement can feel like a tornado hitting our fragile bodies.
Anyhow, I will get into the detail of how Professor Findley's team helped me in next week's post. See you then.
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