In July 2009 I was struck down with an unknown virus which left me hospitalised. I never made a full recovery and within four months I was told I had M.E. When I got my official diagnosis of Myalgic Encephalomyelitis a year after that virus changed my life forever, my paediatrician told me he was 90% sure I would be better within a year. After a steady decline in my health, two and a half years after that appointment I became bed bound and reliant on others for my every need. This was Severe M.E and never did I imagine the suffering an illness often labelled as “just tired” could cause.
Many people with M.E will tell you that there are good and bad days but, in my experience, when you have Severe M.E the good days are rare to non-existent. Each and every day is a matter of survival.
At my worst I was unable to feed myself, lift a cup of water or speak above a whisper. I had to be hoisted onto a commode, washed by others in my bed and was unable to even sit up unaided. Light and noise caused spikes in my symptoms that could last for days or weeks at a time. A loud bang can make me feel physically sick and sometimes just breathing feels like climbing a mountain. I have had to have a catheter since October 2015 because my bladder wouldn’t empty and in March 2018, I had a suprapubic fitted because there was nothing my Doctors could do to fix it. There have been days when I could see the fear in my Mum’s eyes as she watched on whilst I laid in unimaginable pain, unable to do or say anything to help me, days when Paramedics have rushed to my house only to say I’d be better off at home.
For seven years I was unable to walk. To take even a step someone would have to hold all my body weight. I have recently learnt to walk again; it has taken two years of extremely hard work and a lot of setbacks. But even now, as amazing as it feels, walking causes a lot of pain and I am very unsteady. I am doing better than I have in over 7 years and I am so grateful, but I am also aware that nothing is certain with M.E. I still spend over 95% of my time in bed and I still need help with most tasks. The wrong choice or not listening to the signals my body gives me could result in a crash that could easily cause a downward spiral back into total darkness. Nothing is easy and everything comes at a price.
Since having Severe M.E I have become very aware of how much the little things can make a difference. When your days are full of pain and isolation you learn to appreciate what you can. Hearing my Mum fall in the door from work and knowing I’m not alone has become one of life’s greatest joys. A text message from a friend or a letter in the post can turn a horrendous day into a day worth living through.
But my experience is just a drop in the ocean. There are thousands of people in this country also suffering with Severe M.E and Very Severe M.E and many of them are going through hell as I write this. I have friends who are tube fed, who cannot talk at all, who have seizures or have episodes of paralysis. And then there are those who have lost their lives to M.E. They are the reason those of us who have the ability use the little energy we do have to fight for awareness. They are the ones who should never be forgotten.