• Tapir - My Story

    I have been sat here staring at a blank computer screen for what seems like forever. How do I begin to express in words just how this devastating illness has altered my life story?

    I was an academic type, quick thinking, forever active, independent and in control. I had spent a week with a male friend and things were progressing nicely, I had been on my first foreign holiday, I bought nice clothes, socialised with friends, walked miles in short I was HAPPY. Life was good and one day it all stopped.

    On the 16th November 2009 the alarm clock sounded tearing me from my sleep, my body was heavy, and hot, every muscle ached, daylight sliding around the curtains burnt my eyes. This didn’t feel right, I am a morning person; lying in bed and stealing an extra minute is not in my nature. Yet somehow today my body won’t move. Not that I don’t want to move it, but that I can’t physically turn myself over and sit up. Time passes I mentally adjust my routine and cancel my morning dog walk, then I cancel breakfast, then watching the news and I am still not moving. I must have dozed off, I come round again and see the clock. I should be on the motorway heading for school where I am a science teacher, now I should be taking the register, starting a lesson and now doing playground duty.

    In reality I have made an incoherent phone call to work from bed saying I am ill, it may be flu but probably nothing serious I will be back tomorrow and sorry I haven’t sent work in for my children. I have crawled on my hands and knees to the toilet and slept on the landing on my way back to bed. It is here sprawled on the carpet asleep that my parents found me when they came to walk my dog at lunchtime.

    I am helped back to bed and sleep, those first few days sleep is a common feature, I am awake for about an hour at a time, just long enough to feed my dog, or phone work, or struggle downstairs to get some toast and then sleep on the sofa before having the energy to return to bed.

    I go to a Doctor’s appointment. I wobble into surgery, resting against the walls and furniture on my way. The doctor calls me, a GP I have never met before yet will come to know well, he waits for me to walk the few metres to his office, but it is a long wait, he comes and takes my arm. A sick note is issued; the first of many. Weekly I return for a new sick note, then two weekly, then 3 monthly. Initially they cite ‘debility’, later ‘a fatigue syndrome’ before finally resting on CFS/ME.

    I am one of the lucky ones, those diagnosed early and not labelled as lazy or depressed. My Doctor suggested CFS/ME after 6 weeks and it is me who refused the diagnosis, I had done some research. I didn’t want this illness, this horrid, debilitating illness with no treatment or cure. I didn’t want to be ill and somehow if I refused the label maybe I wouldn’t be.

    I spent Christmas alone, the first time ever. My parents reluctantly left to visit my sister under the impression that I would soon be well and travelling to friends myself. But something was really wrong with my body, it just wouldn’t work, the batteries were flat, I was in constant pain, the smallest task exhausted me requiring sleep and light and sound hurt. In fear and desperation I book a doctor’s appointment between Christmas and new year and the diagnosis CFS/ME is added to my records. I leave the surgery and sit sobbing at the wheel of my car.

    Time passes, my symptoms persist, I do not get better, I do not feel well. I scour the internet and library looking for answers but my brain is muddled I suffer from cognitive dysfunction; I can’t process what I read and the light necessary to see the words in a book is too painful. Somehow I struggle on, my teeth go uncleaned, the jobs undone and bills unpaid. I eat toast or my parents bring me food. I continue to believe that one day I will wake up and all will be well, I will feel well and can rejoin life.

    I manage for 6 whole months, I am strangely proud of that, I can’t say I lived that time but I existed. My friends disappeared, the phone calls and invites stopped and in all honesty most of the time this was ok as I could spend my energy on surviving.

    One day in April everything gets too much, I am not thinking straight and I phone my parents. I am scared to be alone as I am now terrified that ‘this is it’ and certain I can’t carry on like this. I stay with them and sleep solidly for almost three days, leaving my bed to go to the bathroom and sitting to eat a little food. My Dog is constantly by my side. Something ‘broke’ inside me, I realised that I had given in, I no longer cared and knew that at that moment this illness was winning. I decided to fight. I knew I had to fight but also that I had to fight in a different way, I couldn’t just push on and make myself do things, I had to be clever and fight in a different way.

    I phoned adult social care and answered their questions whilst sobbing down the phone, I have never felt so embarrassed and humiliated but this was how I could fight and get some control. I was seen quickly and loaned equipment and awarded care hours from an agency. My pride at first meant I only took a fraction of the care offered, 3 hours a week to start but over time I accepted help and the hours increased taking the burden away from my parents. I applied for DLA and ESA and thankfully was successful without a fight.

    In August 2010 I employed Angela as my carer. I had learnt to accept help and following the advice of my specialist consultant I was ready to ‘spend my energy on the good things only’. Angela will never know just how much she has meant to me and my journey with this illness, I have been lucky in employing a carer and getting a best friend. She has been with me over a year and my quality of life has improved dramatically. With careful planning, pacing, rest and a big dollop of luck I have been able to go on ‘adventures’. That is what they are to me, to a healthy person they may be a walk along the beach, or having an orange juice in a cafe, or going into town but to me they are adventures and are celebrated and enjoyed as such. It is these adventures that tell me I am winning the battle. The ME has taken my health, my career, my independence but it hasn’t taken my spirit.

    It has been a gruelling 2 years, a very bumpy journey each high balanced with a low as post exertional malaise claims my body and mind. It has been lonely and frustrating, there have been tears and despair but there is also hope.

    I no longer expect to get better. I have been told by two consultants that I am one of the few that won’t recover. I may make some improvement but it will be small, for example I may be able to walk to the end of the road. But I have not stopped hoping. I hope one day to be better and to walk freely. But for now this is my situation and I have to live with it as best as possible, so I am moving home. I am selling up and moving closer to family, to a home that is more ME friendly and an area that has better disabled facilities. But most importantly I am moving to start a new life, to draw a line under the last two years of illness and close the chapter on the life I had before that. I am going to start again, me and my ME and I am going to squeeze every ounce of livng I can out of my life. I never want to just exist again.