after reading rachels latest post it bought back memories of a time i would rather forget. as a child coincidentally a nine year old child with undiagnosed Ehlers Danlos/PoTS.
a week after this picture was taken my life was to change forever. i had suffered before with leg pain which was put down to growing pains. yet what i was to experience completely changed me, my mischievous personality, the energy laden kid, became a sick kid on and off for the next 26 years. with no explanation. no reason. just ?.
i was nine when i had my first trip on an airplane. i was nervous, yet excited. previously trips abroad were taken by car. camping. this time we took the 2 and a bit hr flight to southern spain. i can remember the heat that hit me when i stepped off the plane. wasnt like travelling in a car, the slow acclimatisation, bam in your face heat. the first week i seemed fine. trudging down the beach, trying new ice-cream flavours, being couped up in an apartment wasnt much fun, i was used to campsites, running around, taking ourselves off to the pool, eating outside, feeling free.
as the second week approached i began to suffer with a sore throat. nothing serious, i felt fatigued, worn out, i remember sitting in the supermarket by the tills waiting for the family to finish shopping. i recall the heat, it was october, i was used to the august heat in the med, so i should of been able to cope.
in the taxi making our way to the airport, there was a forest fire, the flames lite the sky up, the heat made me feel unwell. when we arrived at the airport there was an 8 hour delay. i lay on top of the luggage and slept. i slept on the flight home too. when we reached home i felt ill. the mother took me too the doctors straight away. i had stomach pains. she had to carry me in, i couldnt walk. the lovely old gp sent me straight to hospital, he thought i had appendicitis.
i was in a&e, laying on the bed with doctors coming in and out. after work my sister came and brought me my favourite teddy bear, jasmine, (which i still have). i was hot, in pain, stomach pain, bowel pain. the drs did the test for appendicitis, not nice, then sent me to the isolation ward. by this time i had the runs. then started to vomit. i was hooked up to an iv.
after a few test, the drs couldnt figure out what was up. they thought i had gastroenteritis. yet i didnt. they tried to persuade me too eat. i couldnt i would throw up. once when i was own my own, a nurse came into the room and told me that if i didnt start eating they would have to stick a tube up my nose and down my throat and force feed me. i was terrified. i didnt tell anyone. so i lay there night and day, for six days. eventually the drs said i could go home. the symptoms persisted. my gp recommended i take a rehydration powder. i slowly began to feel better.
i never felt the same. im pretty sure this was my first PoTS experience. the symptoms, the feelings, felt the same. i would overheat regularly afterwards, have stomach/bowel pains, headaches, dizziness, couldnt eat or drink.
looking back at that skinny kid in the picture makes me sad. also makes me laugh. the way i slouched, i still do that now. lanky long legs, skinny wrists with big hands ( also have marfan habits) i have missed so much in life due to the ever present genetic diseases. i have lived a part-time life up until three years ago. now its greatly reduced. i wish the diagnoses had been made earlier. i could of had a different life. although a life with help, i could of achieved much more.