M.E awareness week, day 2
Today's post is a voice that desperately needs to be heard, if you read only one of my posts this week, please make it this one. It is by a friend of mine, if only she was the only one who has been through such horrors, sadly she's not alone and children and adults are still experiencing this at the hands of the medical 'profession'.
"Sadly like others I have had to endure horrendous physical symptoms they had and are having to endure and the appalling treatment from the medical profession.
I have had ME for 15yrs, 6 of which I spent bedbound. I became ill when I was 14 and at the beginning I was labeled by the Doctors as being bullied, school phobic, depressed, bulimic.
I was taken into the Ulster Hospital and had terrible treatment at the hands of the consultant. He played cruel mind games on me and my parents. To prove to the Doctors that I wasn't bulimic I resorted to terrible means. I swallowed my own sick after every meal for 6 months. I was sent to 3 psychiatrists all who said my illness was physical though. Thank goodness for them or who knows where I would be now.
I was switched over to a different GP who diagnosed me as having M.E, 2 1/2yrs after becoming ill. He apologised on behalf of the medical profession for what I had been through and referred me to an M.E. specialised at the Belfast City Hospital.
Finally I thought, this is it, someone who understands my illness. We had positive meetings with the M.E. consultant and he felt it was best for me to be taken into hospital under his team.
When I was taken into The Belfast City Hospital however, I was completely deserted by him. I was under a Physio who knew nothing about M.E., neither did the nurses or junior Drs I was seen by. The OT from the M.E. clinic did nothing to help this, and although she had some knowledge of M.E, she had no knowledge of severe M.E.
I went into Hospital able to lie and watch tv on the sofa and walk out to the car with assistance. I came out bedbound and unable to walk at all. I had my 18th birthday during that hospital stay, traditionally you get a key, a symbol of the freedom you now have, the world opened up to you. My key was to the 4 walls of my bedroom, where I spent the next 6yrs.
Shortly after coming out of hospital, I went down to my lowest point where I remained for 4 years. I was unable to move from the neck down, unable to open my eyes and could only whisper a couple of words a day. I was effectively trapped inside my own body. We had lost all faith in the medical profession so instead of getting carers, my Mum became my main carer, helped by my Dad and sister. I had to be washed, dressed, fed. My Mum bears the physical scars of back pain to this day from having to lift my dead weight body unaided. I was in terrible pain constantly and had severe nausea, every breath was an effort. I was very sensitive to touch, smell and noise and our house changed from a bustling, fun house to deathly quiet.
My life became solely my bedroom and bathroom. For 5 years I couldn't see anybody other than the 4 members of my immediate family. I couldn't even see my Grandparents for all those years which was heart breaking, I was terrified that they would die without me having the chance to say goodbye.
I spent 7 birthdays completely bedbound and every day in between. I couldn't even celebrate my 21st, the only stimulation I could take was a balloon in my room. Presents lay unopened for weeks. It was another 4 years before I could look properly at what I had received.
I have had terrible experiences of the medical profession throughout my illness. In a shocking incident a consultant came to my house to examine me, told my parents that she couldn't help me but if I didn't get out of bed I would die. Later my Mum told me that every morning she dreaded coming into my room, in the fear I would no longer be breathing.
On another occasion a neurologist came out and told my parents that M.E. didn't exist and I could get up if I wanted to. How could anyone think that I would have deliberately gone through the heart break of missing my sisters wedding, my best friends wedding, let alone spend every day in bed for the previous 4 years. As Naomi said, if I was going to make up an illness, I would have made up a better one than this.
There were times when my Mum would break down while feeding me, the dam would break and the tears would come cascading down. I can't tell you what it was like to not even be able to move my hand 6 inches to comfort her, to not be able to say more than a word. How could anybody think I would be heartless enough to have made this illness up.
I'm one of the lucky ones, I have crawled up to 35% on the M.E. scale (it means Tori can potter about the house and can go out occasionally) I spent 6 years bedbound in total. I learned to sit, stand, walk, write, dress all over again. It was like being a baby. My life is still extremely limited by M.E. but I am no longer bedbound and can live independently with the help of my husband and carers. I am about to approach my 30th birthday, having lost my teens and my twenties to this terrible illness. I hope my 30's will be different but my future is dependant on biomedical research. In the meantime I need good care and support, physically, emotionally and financially. My real hope though is that things change so no one has to go through what I did."
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