I was touched a few weeks ago to get in touch with this amazing young lady! Her story is one similiar to many of us who suffer with an invisible disease. Pain, struggles, fatigue and at such a young age! She needs some encouragement as she is facing some tough surgery tomorrow! If you can post a comment for her to read and I will pass them on to her, she would love to be perked up!
“Hi my name is Amie and I’m 18 years old. I live in a large town called paisley which is very near Glasgow in Scotland. Since the age of 3 I have always had kidney bladder and urinary tract problems. The hospital and doctors always gave me Paracetamol and antibiotics and sent me home. By the age of 11 i started getting severe back pain and couldn’t move out of my bed one day and my mum thought i was pretending to get a day off school but when she seen me burst out crying even trying to move she took me straight to my GP who referred me to specialist who confirmed it was Sciatica (which runs in my family). My kidneys and etc started to get a lot worse as well as i got older. I have had kidney stones and severe infections more times than I can count on my fingers. I have been told that my kidneys are that scared that i will be lucky if I don’t need a transplant by the age of 26.
Since January this year i have been kept in hospital just over 13 times all with my spine and kidneys. I am now scared of hospitals because of the way I have been treated by the nurses, they bullied me, shouted and screamed at me, refused me pain relief and let me wet myself. I was so ashamed as I’m only young. I was too scared to tell anyone because I thought they would just get worse and pick on me more. They kept telling me and my mum for 7 years that nothing was wrong with just my kidneys or an infection and they would put me on drips and give me lots of pills.
In August of this year I took a turn for the worst and physically couldn’t walk or move or even sit up on my own. I was taken into hospital screaming in pain and yet they only gave my co-codamol. I was on stronger medication at home. Night nurses would come in and scream and swear at me at night for crying because i was in pain. My mum begged doctors for an MRI scan and after a week and a half in hospital they finally agreed. I had to wait eight weeks and when i did get the scan it revealed my worst nightmare. My spine is deteriorating, my lower discs have no fluid in them so today I am having a serious operation to trying and fix it but if the slightest thing goes wrong i will be paralyzed which I’m most scared of. It has taken them so many years to finally figure out what was wrong with me and four different surgeons refused to operate on me because they didn’t want the blame on them if anything went wrong. I live in severe pain every day of my life I wouldn’t even wish it on my worst enemy. People who don’t know what it’s like trust me it isn’t easy its horrific! Every time i see a shooting star or have to make a wish I wish that pain didn’t exist! One day i hope to be able to have children and run around with them or walk my sisters dog or even walk without my walking sticks. That will takes years but the darkest is before the dawn! One day i will dance again!
I am Amie Harvey and that is my life story :)”