After gaining 9A* and 2A grades at GCSE and 4 A grades at A-level (including the joint highest score in the country for one of them), and having been a member of netball, hockey, football, swimming and athletics teams, I arrived at university in September 2004 to study Medicine, a healthy individual. All that changed when I became ill with a virus in my first term there and then BAM!
This has been my life 24/7 for the last 5 years — imagine this: Being bed-bound and unable to sit up because every slight movement, even talking, causes you to go into heart failure; chest pain and pain in the left arm; heart straining to pump; severe headaches that mean even a tiny move of your head causes agony to shoot through it; dizziness so great that it causes the room to swim; muscle pain and exhaustion especially in the arms and legs, making it so difficult to move them; insomnia – 2 hours broken sleep per night is about the norm; chronic constipation meaning that you have to use a suppository just to get some bowel movement; painful and swollen glands and lymph nodes; a constant low grade fever; poor digestion and absorption; agonising stomach pain; spine pain; muscle twitching…you get the idea!
I don’t want your pity. I want you to understand…and to read on to raise your awareness. This is severe Myalgic Encephalomyelitis (M.E.), which means inflammation of the brain and spinal cord [absurdly M.E. is also called Chronic Fatigue Syndrome (CFS)]. I am dictating this in the hope that people will listen. I have to dictate it for obvious reasons.
My life involves just about managing to prop myself up enough to eat, getting to the mini portaloo in my room (a remnant from our camping days), shuffling to the bathroom a couple of times a week to wash lying in the bath under the shower. All these “activities” cause my symptoms to get even more severe and I have to lie still in between them in order to be able to do them. My treats involve watching a bit of television from my bed (though audio and visual stimuli are also exhausting) and going on Twitter on my iPod whilst lying flat. I can manage a few tweets a day, but that takes a lot out of me too.
Earlier this year I had blood tests and other tests at a specialist private hospital. The results of these tests showed I have a gene missing and other genetic faults that mean my genes can’t code to make the substances that get rid of waste products from the body (detoxifcation); they also showed immune system dysfunction. So my body is very toxic and has enzymes being blocked by heavy metals, which my body can’t get rid of. Also I have active viruses (HHV-6 + HHV-7, which are usually latent in normal people, but are active in me because of a dysfunctional immune system) and probable lyme disease. This is all causing my mitochondria to fail, causing my heart to fail.
So my doctor at the specialist hospital has drawn up a treatment plan. It was a huge shock that the estimate for 12 weeks of treatment was £35,000! With the poetry book ‘Rainbows in my Eyes’ I hope to raise enough money to have this treatment. This is my only hope of getting any better from the hell I live through everyday. I have applied for the NHS to fund £7500 of the cost. Suffolk PCT have turned down my doctor’s request for funding, however they shall resubmit the request at some point.
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