I’m currently sitting in the back seat of my dad’s semi aged pickup, surrounded by my family, on our way to a private appointment 3 hours down the road.
Switching between reading, tracing the outline of the cars that wizz past with my fingers and casually switching my stare from family member to family member, I’m still kind of nervous. So my legs are really aching and I’m in my own little thought bubble, darting between the slightest thoughts that makes apperance inside my little nut of a head, tracing over every thought delicately as if each are fragile. Right now I’m stretching my legs freeing them of cramps and this one little slither of a thought keeps crawling it’s way back into my head; ‘I hope my family know just how great they are’.
As a 16 year old, I’m almost expected to hate my family just because of my age and I guess how some teenagers act towards their parents? But I can honestly say that I, although I’m a huge pain in the royal rump, really do appreciate my family. Even if I don’t show it enough.
My parents especially, get so stressed and I can only but imagine what they go through to provide for my brother and I, but I often find myself wishing they’d realise how amazing they are and come to the conclusion that I made so long ago; that they are legit the best parents, best friends and role models any one could ask for in this messed up world we call home.
So I’ve made it home after a total of 7 hours travelling, and I’m pleased to say it was very much worth it. We visited a recommended cardiologist specialising in POTS in young adults/adults and I’m honestly over joyed with the answers I have finally been presented with. I’ve spent so long not understanding why I had this illness and anything really other than how it made me feel, that it’s such a relief to have someone finally take me seriously and provide me with some answers.
As far as good news could go with an incurable chronic illness, I guess that’s what we got. I have to make a few adjustments, take a load of other tests and then re visit him when we’re ready.
So compression leggings (because that won’t make me look absolutely ridiculous) are now something we need to look into, the obvious ones like drinking even more and still eating with half a bloody tub full of salt on my dinner plate were suggested as always. Small amounts of exercise, not too much that it tires me or puts strain on my joints, and cutting some carbs out my diet.
It was actually really interesting to find out that the people centred around the development of POTS research, have now come to the understanding that Hyper Mobility Syndrome or EDS, which he said are apparently the same, damage nerves by over stretching and damaging them due to my flexibility. This then causes the blood vessels in my legs to be like a gazillion times bigger than they should be, and Ta Da. You have POTS, my love. Congrats.
To my understanding, my blood vessels are way too big to successfully pump blood to my heart and then to my brain. This then causes my heart to beat extra quickly upon standing and anything else that puts strain on my body, but still fails to get the blood to my head quick enough resulting in the tremendous pleasure of feeling dizzy as heck and then gracefully fainting wherever I choose.
Anyhow, today has been fairly busy but we got some answers and some possible tips on how to deal with this incredibly poopy situation. Today again just shows how amazing my famalam are and all they do for my brother and I.
There wasn’t much of a point to this one, just an overall caption of my days and sharing my good news. Today’s been a successful day in my long, long journey of learning to dance in the rain.