22 June 2012

sad nine year old

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. 


The Myasthenia Kid said...

thanks so much for the link from your blog to mine. Im happy to report that people have used it!

The thing that stuck out in my mind was "growing pains" I was told I had that for years when I would cry with the pain in my knees and ankles. I had so many red flags for EDS but no one put the pieces together. But then 30 years ago I doubt very few people were ever diagnosed with EDS unless they were at the very chronic end of the scale.
Thank you so much for your post hun.
Have a good weekend xx

Em said...

hey rachel

thats ok. its nice to hear from others who have had smiliar experiences,although not pleased if you know what i mean. i had lower leg pain when i was 7,i cant explain how i coped at that age.

take care, enjoy the rest of the weekend, rain and all! x

Achelois said...

(warning waffly post top of my pain meds & this is the short version x)
So many stories the same. At 48 (nearly) I look at pictures of myself when I was a child and look at you we could have been related! Except I was very short, still am actually tee hee. I had the skinniest legs on the planet, miniscule wrists perpetually underweight. Everything with me was put down to being extremely premature. 0-5 years I was a very poorly little soul, 5-10 not too bad although not much stamina, always mind blowing leg pains especially at night and they certainly weren't growing pains as I didn't grow, I remember putting my feet on the wall at night and pushing really hard hoping the pain would go, I rarely said anything as I thought everyone had it (I wasn't expected to do taxing things you know because of my prematurity!!!) 10-16 yrs,menstruation started at 10 which was ridiculous as I was so tiny and the EDS raged with the onslaught of puberty (still undiagnosed) Although poked and prodded a LOT by eminent professionals even told my mother I had rickets, (which I didn't) to explain away my wonkiness. I was a diabolical disaster, rarely making it to school and allowed when I did to lounge around in the comfy chair in the library whilst others rushed about with hockey sticks, the walk to the playing fields was someway from the convent I went to and it would make me faint. I had to give up the clarinet even though I was originally pretty good as that made me faint. I had perpetually swollen glands and severe ear infections and the worst floppy type tiredness with pain imaginable. 16-21 not too bad but always with terrible pain which I thought was normal. Lost a couple of years, somwhere in there as I massively rebelled of which I am not proud - fast forward, Worked but people were nice back then! Always caught everything and though a trier always something wrong. Married, pregnant on the sofa, got an episiotomy stitched up by a &^%$£ midwife who accused me of hysteria,(umm stitching ones private parts with a local anasthetic that does not work is mindblowinginglyinglyingly..... painful when one has fragile skin that tears easily thank you very much) Professor G told me a few years after that sadly he heard this so often.Had to have two midwives and a doctor hold my hips in, giving birth.Stating there was a 'bit of an issue with them'. (The kids are great by the way). Finally diagnosed a couple of years later hurrah, except its incurable, my daughter has it. Its painful, its still misunderstood and even the most wonderful physios scream in frustration with the myriad of 'stuff'the condition throws up and lack of ability to really help the EDS sufferor. On the up side, what doesn't kill you makes you stronger. I get to have a lot in common with lovely lovely people like you em. Oh I also could have achieved an awful lot which I haven't although frankly now I am 48 my perception of achievement is different these days. I have more time on this earth to look back on than I have in the future. I have raised two wonderful children, who are kind, considerate and as adults now if they are my only achievement I will die happy. em, we have only ever known pain. That gives us a gift, empathy for our fellow man, we do not judge and we listen. I think you would make a really excellent counsellor, or someone who could teach crafty stuff, you could gently even if it takes years do this. But for me you are no failure, you deal with this condition with dignity and you are a truly lovely person. Don't let the EDS define you, its part of us yes but there is so much more than bloody EDS, EDS is rubbish rubbish rubbish it hurts, inside & out, if we told people we had MS they would so get it, say EDS and peoples eyes glaze over. But hey, em, look on the bright side hun, its given you an amazing pair of legs sweetheart. Much love and a gentle hug on this soggy Saturday night. xx

Em said...

hey achelois

thanks for the reply. reading over is so sad, for a lot of eds people thats the common story.

glad you were able to get dx earlish. like you say though, no cure. good old prof g, eh he is still working.

i dont understand life at times, alot of times.

hope your feeling ok, as ok as can be. its not fair that your daughter has it. hope shes ok too.

my brain isnt working properly. packing at the mo for stanmore. making sure i take everything, oh my so much!