Trevor Reed

Meningococcal disease at 51

Meningococcal disease

It is hard to believe that writing this down now, it is 351 days since I became ill, at the age of 51. It is strange to comprehend that a year has just about passed since my world turned upside down for my wife, children and myself.

My story seems initially a bit backward, as in real time I lost three weeks of my life in a coma, from Christmas Day 2007 to January 18th 2008. And when I did come back to the real world I had to rely on my wonderful wife and others to tell me what had happened.

The brain is a weird and wonderful thing and the depths of its capabilities are a mystery even now to its full potential, even to the medical profession.

The time in a coma was full of what I can only describe in my eyes as survival nightmares. I didn't know I was comatose. The scenarios I faced were so real to me that when I was truly aware it was difficult to distinguish where real or nightmare started or ended.

To go into depth on where I went in my nightmares would fill a book in its own right, but the crux of them was that I had to fight to survive each one to live. Everything in them was so real - the fear, the thoughts, the pain and the will to survive, no matter what it took.

The only common factor in every one of them was the intense love of my wonderful wife of 30 years and my beautiful children. I was determined no matter what I had to do to be with them and no-one would stop me.

There were three occasions, however, that I was in a wonderfully white room.  So peaceful, so quiet and a bit like being at peace. In my peripheral vision I could see two - what I can only describe as - straight pear shapes. They were brilliant white, but with lilac and purple bottoms. They just floated around me each time.

I later learned that three times my wife had been told I wasn't going to survive. Strange coincidence? I truly don't think so now. I can't match real time critical moments to my dreams, as time didn't exist in my world. But I truly think I was very close to dying three times.

But I was not going to die. I was not, no matter what it cost me.

Stubborn, yes, that was probably the best description of me during that time. Too stubborn to die, too stubborn to give in. But the true reason for my stubbornness was my love for my wife Ann, whom I've loved since I first saw her when she was 15 years old, and that of my handicapped son Jamie and my beautiful daughter Michelle.

They were my reason. They were my will, my whole cause for fighting my nightmares, to get back to them no matter what it cost me.

I did it. I survived meningococcal septicaemia. I survived kidney failure, liver failure. I survived being 'kick started' twice, as my heart needed a kick in the butt. Not to give in.

But to all this survival, yes, there was to be a cost. A price to pay.

After surviving intensive care for three weeks and then high dependency, I'd lost over two stone in muscle weight, was very anaemic and I'd developed tinnitus in my left ear.

But the worst was what the septicaemia had done. My toes were black and my fingers were the same too. My brain had taken the poison, my head hurt and my memory was knocked around.

The headaches continue even now, but they are getting less frequent. The memory is annoying; my short-term memory is a pain but long-term isn't too bad. I have 'glitches', when I know I should know something, but can't remember. Gets me mad, sometimes I have to admit.

Then there was the toes and fingers! After a couple of months back home I went back into hospital and had nine toes and part of my right index finger amputated.

This was when I had to learn to walk again. My balance was shot. I was all over the place, like a 6ft drunk, but without the 'fun'. I had to rebuild muscles I'd lost, fight the pain of amputation and stay upright as well.

I won't deny or try to make it sound easy. It wasn't, it was frustrating. It was physically flaming hard, but emotionally it was so so difficult. I had days of feeling very low; I don't know why, I had no reason. I was alive.

But I felt alone. Hard when I'd never been physically alone for all that time in Comaland! I'd learnt my wonderful wife stayed in hospital with me for 15 days solid, talking to me, playing music to me, not giving up. Until she was so tired, she became ill and was sent home.

But my 'alone' was me, I could not comprehend what hell my wife had gone through, watching me lying there with so much going on, being told I wasn't going to make it.

I couldn't truly feel her emotions but I could understand. I'd been a police officer for 20 years, I'd seen the human race at its worst. Murder, suicide, terrible road accidents; I'd been there with people - and their loved ones - who were deceased or dying. I knew death, but I wouldn't wish it on anyone.

My alone was inside me! The lost time which won't come back, the pain, the emotions of how I felt, how it had changed my whole life. The fact that walking hurts, my head hurts, the frustration of memory problems. The fact that what I used to say in five minutes now takes me four times as long due to pain, discomfort, weariness and stability.

My wife has given me her love so unconditionally, without thought for herself or how much pressure my illness and its affects had put on her both physically and mentally.

No matter how hard you try it is very hard to fully explain emotions. We tried our best but there were still things that each of us truly couldn't honestly understand.

In view of this I contacted Tina at the Foundation. She listened to how I felt and could understand my feelings. She put me into their befriending scheme, to talk to someone who had been through what I had and could truly understand.

I was put in touch with Simon from Yorkshire. We talked on the phone and I didn't feel alone anymore. He had amputations like me. He had been ill a year before me at Christmas 2006. His wife had been through what my wife had. It helped so much, for both of us. My wife had someone to talk to in Simon's lovely wife, and vice versa.

I would truly recommend the befriending scheme to anyone. You may not get a perfect match to your age, sex or class. There may be variations on your individual circumstances and resulting health. But you are not alone!

Everyone is different in how this terrible illness affects us and our loved ones. We might not be exactly how we were before, but believe me, willpower and love are an amazing medicine.

You have to adjust, you can drive again, you can walk (okay, slowly and painfully at times) but the gift of living puts the world into perspective and I live for each day now. I enjoy the time I have been given and feel very very lucky.

I went back to hospital on 11th December 2008 and had my only remaining toe amputated as the necrosis had damaged the bone. But at least now I've got a matching set!

I won't pretend this has been easy, it hasn't by any stretch of the imagination. I realistically know my life has changed and my family's lives have changed.

But I am alive. In my heart I know it was the skill of the doctors in ICU who helped, but I honestly truly believe it was the love of my wife and family that pulled me through. Plus that amazing thing called willpower.

The will to live is in us all, it is the strength in us to survive, part of our natural instincts.

But being bloody stubborn is the key!