Severe ME/CFS Information Pack

Severe ME/CFS is a cruel and physically disabling illness which wrecks the lives of thousands in the UK and millions worldwide. I know because it took my life for several years. One of my promises back then was to do all I could, when able, to help the Family and Friends of Severe ME/CFS Patients understand the nightmare that their loved ones are going through; what Patients and their Carers have to battle against every day, and how the understanding, support and compassion of Family and Friends can make such a dramatic difference to their speed of recovery. Hence this Blog and My Severe ME/CFS Information Pack now available as an e-book. I do so hope that both help guide you through the hellish maze that is Severe ME/CFS

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My Severe M.E. Recovery Story (Part 2)

Right then, here I am for my weekly posting.  Before I get started on to Part 2 of my recovery story, I just have to tell you that I am in somewhat of a state of shock...the interest in my Severe M.E. Information Pack over the past couple of weeks has been absolutely amazing, and you will be glad to hear, not just from concerned Friends and Families of Severe M.E. Patients but from Medical Professionals that has to be good news, so thank you to everyone who is spreading the word and keep your fingers crossed that it continues!

Anyhow, on to my admission to Professor Findley's specialist CFS/ME Unit in Romford Essex.

It was a Monday morning in February 2000 when we heard I had a place; another Patient had had to forego their place 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 some expert medical help, but christ I was scared, really really scared.

I had been bedbound for 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 back 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 make the 4 hour journey from Manchester to Romford?

For the next 3 nights I remember waking 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 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 with all my bits and to drive my husband back that evening..  I remember feeling their strength,  fixed smiles on their faces, 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 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 weighed less than 7 stone.
The journey was a nightmare; laying down yes, but limbs 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.  I have never been more terrified in my life. And here I would stay 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 after telling you all about getting there, but I did think it very important for Friends and Families to appreciate the difficulties involved in moving Severe M.E. Patients around the country. Sometimes getting a place for a Severe M.E. Patient in a specialised Unit is the 'easier' part, the actual practicalities can often prove just too much for some very severely affected Patients, so please, please try to understand that if that is the situation with your loved one.  Anyhow, I will have to get into the detail of how they helped me next week.  See you then.


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