Been a While

Hands up- it’s 4am and the nights are seemingly long again. It’s nearly 3 weeks since the biopsy and still no word. I can only imagine that there are little particles of me in a Petri dish in a controlled environment, maybe or maybe not doing something. Like waiting for a blue line on an IVF treatment, a cluster of cells, dna in a jar. Does somebody stare at it each day, watching it’s every twitch? I have to be honest I have no idea, but I do wonder if that is the case. The last scan I underwent has shown nothing sinister other than a massive bone cyst in my left heel. One of those things that’s very common in people with hEDS and osteoarthritis. One of those things that had I not been undergoing all these observations I’d have remained oblivious to its presence. To me it’s just another niggle- one which I will be doing nothing about! There’s been some funny incidents looking back over the last few weeks. Radio silence from my part has been a strong signal that my mashed up thoughts have been rather chaotic and unable to process into words. There’s been some ‘choice’ words used on occasion I must admit. Screaming so loud in my car whilst parked, searching for my fallen phone, that the lady 3 cars along heard me. That moment when with one eye- searching through dark bags and in dark crevices I desperately needed the stupid ‘smart’ device to pay for my parking and use the damn thing to display the train ticket I’d bought on the ‘App’ to get to the sodding appointment at the address that was on the calendar to see a man who’s name was in my contacts and give him an authorise code that was sitting in my inbox! ‘Arghhhh’ was not the word I screamed- in fact I’m not too sure what noice came out when I finally did make a sound. Needless to say after dialling my daughter from the steering wheel and asking her to ring me back so the damn thing buzzed and illuminated- I found it- and still made the train. Only to accidentally throw it in the bin on board as I exited at Marylebone, left stood holding the empty coffee cup in its place. So with someone else’s apple core debris and a dribble of cold tea, I rescued the ‘device’ and proceeded to the hospital. Here I met by a lovely man, Prof Foster, not a specialist in my field of OM, but an Eye Man. Two days prior to this appointment, bank holiday Monday of course, I wiped my forever weeping eye and there, on my nice white tissue, BLOOD! Urm, ‘No’ that’s not correct. All kinds of body parts are acceptable to bleed. Not my eyeball. Family fascinated, and freaked, we smeared tears across tissues for a few hours, definitely confirming that this was incorrect. Now under normal circumstances one would pop to A&E, but the thought of trying to explain and educate exactly what was wrong with me and what I’d had done to someone who’d probably never even heard of the condition, let alone had any knowledge of how to deal with it, we remained calm and carried on. True British style. Prof Foster said I would probably be the most ‘interesting’ case he’d see that day. There’s a stitch! A blue nylon undissolved, dissolvable stitch. 3 months its been in there and finally my eye has decided it’s long passed its sell by date. So with OM Doc on holiday, I wait patiently until next week to have this removed. Urgh- the thought of it. I’m still wearing my patch most of the time outside of the house. The elements hurt. Wind, sun, cold, rain, and I actually quite like the protection factor of it. It’s a little mask to hide behind, literally. I’m not feeling as brave as I have been. Things are tough, thoughts are dark and insecurity’s rearing up. It was only a matter of time as the shock actually starts to embed itself, occasional turmoil identifies itself in many disguises. Intolerance and tears being the obvious ones. A glo worm has appeared in my life. Thanks to my children who have probably noticed my steady decline through our time spent together over the holiday days. Mr. Glo came pinned to a card with a poem reading ‘How can you be glum, when the sun shines out your bum!’ I love him! Thanks guys. My 3 rays of light, brightening some of my darkness. And it is getting darker in here, literally. There’s now a good 25% of visual loss in my OM eye. I can’t call it blindness as I always presumed that to be black, but there’s this area of what can only be described as frog spawn on amphetamine in the lower right quadrant of my sight. It’s a little annoying to say the least. Effects of having ones’ eye nuked apparently. So with 3 weeks passed since the last surgery I have re joined the gym. Great move I have to say. Sometimes need that shove to get out and do something. I’ve been so ‘post op’ for nearly 4 months now that it feels fab to actually take part in some exercise regime. Slow and steady, I promise. No marathons and deadlifts for me. I spent a very interesting 2 hours with a specialist Physio who’s field of expertise is hyper-mobile EDS. So armed with the most simple, yet incredibly difficult to perfect exercises, I am trying to do something, daily. One of my tasks is to stand straight, tall and totally stable while lifting alternate feet off the floor. Actually not as easy as it sounds- and I have to say harder with visual impairment! Bloody eye!!!!! So standing, using the joint line of the massive mirrors I attempt to do this with no sway. It’s creating some interesting looks of nothing else. The household will start to wake soon. I’m going to try and catch the last of the darkness being morning breaks. Let’s hope it’s a nice day.