"Losing faith"

This month marks forty years since I first attended Grimsby Hospital, now the Diana Princess of Wales Hospital. At age seven my new family doctor referred me to rheumatology as my mother had been taking me to the doctors all my life with problems, mainly chronic pain in my legs and sleeplessness....due to pain. My legs and hips had swelled dramatically when given my first innoculation as a baby, I cried for ten days, didn't eat or sleep. The doctor advised my mother not to continue with the two remaining jabs.

I never crawled as a baby, refusing to use my limbs which seemed floppy and lacking in energy, I would use my body muscles to get about, and with my father being an angler and my bald head I soon earned the nickname of Maggot.....still used today!

I never asked or cried for food, my mother had to disturb me to eat, I ate so slow one feed time could run into another. My mother could not breast feed.

My first word turned out to be 'flupe', confused the family as they had no idea what it meant until they noticed I would rub my legs when saying it and grimacing or crying. We still use this word to mean pain, achy, tired. I would get exhausted easily and couldn't play or do what other kids could. My mother used a pushchair for me as she got fed up having to carry me, my legs would collapse under me after a short walk and I couldn't sleep for the pain. She stopped this when I was five after ridicule from other mothers and the school.

I missed a total of two years schooling, punished there for not being able to run properly...cannot land on heels, toe running only! I have never had more than six periods a year starting by 17, never developed breasts or hips, not normal in my immediate family. I am the shortest.

At rheumatology I saw Dr Hunter. I could not tell her wether it is bone or muscle that hurt, I was seven with nothing to gauge it against, I'd always had this pain, I knew it got worse with exertion....still true today.

Anyway, FORTY YEARS later and I still have no answers. I have never complained of pain in the joints, although now, aged nearly 47, my ankles and wrists are very painful and weak, my knees have always burnt and turned purple but not painful. Indeed, Sheffield think it is vascular EDS.

I have seen two different files with my name on, both are never present. I was told aged 26 that a new file had to be started. A Geneologist dismissed me because my file was not big enough'!

I've been told that I can't have stomach pain because there are no nerve endings there. I have a list of 'fob offs' given by so called specialists. If one gives a diagnosis then another soon dismisses that.

When I attend for tests they never know why I'm there. Attended for MRI but after 1hr 40mins of trying the machine would not work. The nurse told me I'd be called back so imagine my shock after 4 months chasing for results of other tests, as the doctor was sent none, they sent letters out saying the scan was okay! ! How can this be? I was also told that the machine available......in a truck.....could not scan my spine as requested and that a seperate appointment would be sent for that....no, nothing.

Also had a rod stuck in my leg for nerve conductivity test, just once then sent home because he did not know what I was there for! And of course no results for that. I attended for an x-ray earlier this year on my neck, the technician put me in a position that was so alien and painful to me that it made me cry and the problem was worse, yet even my GP was surprised to get an 'all clear' for this as people my age normally have some wear and tear especially as I've spent a fortune on special pillows and mattresses for my neck pain.

I managed to work on and off until seventeen years ago when I fully collapsed, have not done much since, survival not living.

Paid for private Immunology test then doctor listened and sent me there. They found no mature red blood cells, lowered immunity, high amounts of iron, called me an enigma because no-one could read my food allergy results, diagnosed as probably food intolerant, and intolable to the world! Hypersensitivity....did this lead to the seizures after taking metoclopramide that the Fentanyl is masking at this very moment, that your Neurologist has dismissed, he signed me off after one visit, also ignoring my daily migraines.

Diagnosed with Hyperacusis at my GP surgery only to be fobbed off at ENT. He refused to re-look in my ears after a fleeting glance was not good enough, the test was during a fire alarm, I was not told it had re-started and I could not prees that stupid button with my useless thumbs, he ignored my migraines and broken nose that stops me laying down to sleep.....talked into his dictaphone and waved me out of the room.

I could go on, so many times at this hospital have things gone badly for me. I was meant to see a professor in London for complex Ehlers-Danlos Syndrome but my docitor left Rheumatology and my referral is 'lost'. This was 6 years ago, I still do not know what I am suffering, but daily rocking, crying, sleeplessness, fatigue, meds, pain has got to change.

I am so fed up of asking for help that I now find it nerve racking to talk to a doctor, anxiety with mistrust.

It feels like there is something I have been 'black marked' for, like I've been naughty and this is my punishment.

I have avoided having children as I feel it is genetic and I would not wish this on my worst enemy, let alone my own flesh and blood.

This hospital knows that I wake up during ops, and that my cervix needed 3 injections to numb it for lasering as the doctor started lasering after just one, the pain was immense and as he withdrew the laser scarred me inside, this should all be on record.

Why is no-one helping. I need the mini pill to control symptoms yet no-one has checked my hormones or lymphs which are swollen. If I cannot prove my health problems to the government I will be left homeless. This is a constant worrying concern that I should not have to live with.