Just finished watching the film Unrest on Netflix… I wish everyone would watch this, if only to see what life has been and is like behind closed doors – from those who suffer M.E. to those who care for the sufferers.
It is a cruel, dark, painful, lonely, and tiring journey for everyone.
I have been told it’s all in my head. I have been told it’s growing pains. I have been told someone else is making me sick. I have went through painful physio- and hydro-therapy sessions time after time. I have had numerous mental health assessments. I have had blood work done many times; an MRI on my brain; CT scans on my body. I have been pushed and pulled, and humiliated, and I have been called a liar.
I have been a 7 year old girl, in agony at school, alone on a cold metal bench, watching other kids play, and asking God if I was going to die, and asking what I did to deserve it.
I have been an 11 year old girl wanting to be free of pain, dizziness, migraines, light and sound sensitivities, mental fatigue, slurring, exhaustion, unrestful sleep for so many years… Just wanting to do things I should have been able to do.
I have been a 13 year old girl struggling to make it to school, bound in a wheelchair, and feeling so alone.
I have been a 15 year old girl mostly house-bound, finally diagnosed with severe M.E./CFS and CPS by a specialist in a specialist clinic, having them tell me they were so surprised I’d managed all this time with so little help… Asking me to speak in meetings to the other patients to help them, but having to refuse because I was too ill.
I have been a 16 year old girl too tired to fight, self-hating and self-harming. Wondering why very few believed me despite a diagnosis – wondering why anyone would think I would make this choice to limit my life.
I have been a 17 year old teen, realising that even those closest to you can be blind to your suffering.
I have been an 19 year old young adult, trying to come to terms that no one has a cure, and no one is coming to offer more help. That this is what life will be like for me. Trying to work through the anger and the grief to accept what I’ve lost, and what I won’t experience.
Here I am, 26 years old in 10 days time. Grateful for what I have, and for those who support me. I have learnt to dismiss the non-believers, and focus on what I can do.
I am an OU graduate with a 2:1 honours degree, determined to do a Masters.
I am a writer, editing my current novel that I will publish, and many more novels to write.
I have ambition.
I have patience.
I have imagination.
I have determination
I have strength.
I have compassion…
I also have M.E.