Hi welcome to chronically Kim a blog about me myself and my multiple chronic illness and how I attempt to live my life with them.
So firstly my names Kim I’m 26 and up until April 2013 I was a normal twenty something living my life and have fun. I was extremely passionate about my job, I’m a midwife…. I know what you’re thinking that has to be coolest job ever and yes you’re right it is AWESOME or it was but we’ll get to that bit. I had plenty of friends and was newly single which I wasn’t overly happy about but hey that’s life. I loved nights out, going to gigs, skiing and basically being a young ambitious 24-year-old.
Fast forward to April 2013 and it was my first day shift after my month of nights and I was on a new ward so there was a mixture of excitement and nerves, I was sitting at the morning handover meeting when I started to feel light-headed, dizzy and nauseated, let me point out here that I was not prone to fainting, I was never one of these teenage girls that fainted on a regular basis, anyway back to the point I was feeling pretty dodgy, I remember leaning over to the midwife beside me and saying I think I’m going to faint and the next thing I remember is waking up on the floor with everyone crowded around me. Everyone presumed i hadn’t eaten breakfast and was just over tired after my nights but I knew it was something more than that I had a severe headache and was vomiting, they brought me to a&e which thankfully was just a trip down the stairs. When I arrived there I could tell the staff were quite worried about me, my pulse was sky-high and my blood pressure was too low, my vision was blurry and I was vomiting and retching all the time. When the consultant arrived she told me that she suspected I was had a subarachnoid haemorrhage, which if you have any medical knowledge you’ll know it’s not something you want to hear. Anyway to cut a long story short, no haemorrhage, 7 attempts at lumbar puncture and a blood patch later and I was discharged after 10 days none the wiser as to what happened. I was advised to take at least two weeks off work to recover. During these two weeks things got worse, my headaches were worse I was dizzy a lot, very fatigued and just generally didn’t feel right, which wasn’t a lot for my doctor to go on…. then one day I’m strolling through pennys with my dad and sister and BAM I fainted again. Surely this wasn’t normal I went back to my G.P and he referred me to a neurologist, who could see me within two weeks, thank god for private health insurance is all I can say it has been my saviour throughout this. The neuro admitted me straight away for a week of tests which didn’t shed too much light on the situation and I was discharged, happy that there didn’t seem to be anything major wrong with me but disheartened because I knew something was going on with me.
A couple of weeks later my neuro refereed me for a tilt table test, telling me that this was the last test and if this showed nothing then we would have to think about psychological causes a.k.a its looking like this is all in your head…… thankfully the tilt table test (which is horrendous) gave me a diagnosis. At this stage I’m fainting up to 10 times a day but on the plus side I know have a name for it… yay!! I have Neurocardiogenic Syncope a form of Dysautonomia… I know it’s a mouthful!! I’m going to do a separate post on this so won’t go into it too much here but basically a range of things cause my blood pressure and heart rate to plummet and then I pass out. Most people think once you have a diagnosis woo hoo you’re going to get better but there is no cure for NCS only management and unfortunately I would find out that was not an easy process. Later I was also diagnosed with Postural Orthostatic Tachycardia syndrome or POTS another form of dysautonomia which I will discuss in more detail in my next post.
My final diagnosis (for now) came in April 2015, a full two years after I got sick and has really tied everything together, it’s called Ehlers Danlos Syndrome and I have type 3 the hyper mobility type. Again I will do a whole blog post on this and the impact of it on my life, it is quite a scary diagnosis to receive.
Ok so I think that is enough for now don’t want to bombard you with too much info! I will do a post soon on my dysautonomia and Ehlers Danlos Syndrome.