Always look on the bright side of life - a song that was going to be played at my aunts funeral as it's the way she lived her life; but didn't get played in the end. I've always tried to be positive and strong, but it's not easy when so much stuff happens that is out of your control.
So, I'm 27 with crohns disease, autonomic nervous system disorder, ehlers danlos syndrome, postural orthostatic tachycardia syncope, chronic fatigue syndrome, polycystic ovary syndrome and dysautonomnia. Nice list of illnesses going on, which co-incidently started to become severe when triggered by a blackout at 19 years of age. Although I started signs of all of the above conditions when I was actually 13 years old - they took 6 years to properly manifest. I believe the signs of crohns were there in early childhood.
I shall not say here about all the bad stuff that happened to me as a child, because that is in the past and doesn't effect me any more; but I didn't have a good start in life - lots of bad stuff that shouldn't have happened to me/anyone did happen - but that's not for here (maybe later in my blog but not now) --- so lets start on my health journey.
At 13 I began to get pain every time I ate, I found eating difficult or rather painful and as a result ate very little which made people assume I was anorexic. My blackouts also began around this time at the onset of puberty where I fainted each month on the first day of my cycle.
At 17 I started to see the doctor and was simply sent for blood tests, told I didn't have diabetes and it was left at that.
At 19 following a major blackout where I was found a short distance from my car (having pulled it over on to a roundabout to get help) ended me up in Resus unit. This led to me having an MRI scan and blood tests, to no avail. I started blacking out weekly at this point - whereas before hand it had only been monthly. No results from tests, so doctors gave up on looking for further answers.
At 20 I had a major pain in my abdomen which I blacked out from, it was thought that I had appendicitis, although this was found to not be the case. I was sent home, but put on the list for a sigmoidoscope; which showed no results. Told I had IBS.
The blackouts continued, I was put on beta-blockers, which made me ill, given more tests and fitted with a 72 hour heart monitor. Still no luck. I was told it was all psycho-symptomatic, in my head and according to my hospital notes at this time "disillusioned about being in ill health". Who was I to argue with the Dr's? I took this as fact and thought that maybe there really was nothing wrong with me.
At 22 I was diagnosed with vasa vagal syncope, which just means common faint. Not very useful, but at least the medication I was put on at this time stopped my blackouts for a while.
At 25 I got my own house and as a result switched G.P which was to become the best thing possible as he was determined to get to the base of all my problems and find out why I was ill. He was the first doctor to listen to me and believe me that something was wrong! He sent me to many specialists and I was soon diagnosed with POTS. A year later I was diagnosed with crohns disease after having lost a lot of weight in this time.
Although there is no cure for either of the above, at least I had a diagnosis.
At 27 - finally diagnosed with EDS/ANS disorder and Dysautonomnia. So it wasn't all in my head after all!!!!
No connection between crohns and POTS according to all medical specialists dealing with me.
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