Dear EDS diary ….

A flash in The pan

The over thinker who always lurks some place beneath the surface only to show itself sudden and unexpected quite like a rabid Loch Ness monster really, never seen but non the less we believe in it, so it must be so) Persuades me I need to explain more so please bear with …. I’m not and never will be, talking about erectile dysfunction by the way, let’s clear that up right now😊…First and foremost I have not the necessary equipment required, secondly well let’s just leave that right there shall we!😁…EDS in this womans world, is in fact Ehlers Danlos Syndrome, and for years I knew nothing of its very existence let alone worry if Im even pronouning it right, (what’s that about ignorance and the bliss thing?)…..but there it is …it too lurked hidden away in the depths, behind a tangled multitude of childhood illness, clumsiness and undiagnosed symptoms…what is it?, Well it’s inherited that much is known…mainly from Mother to daughter..but as Ive spent more time in research, I have infact uncovered that no one in the family is safe..it can and does go from mother to son also…The list of symptoms are longer than my actual Amazon shopping wish list!!!.. Hard to believe anything is that long right?😁, And these days Im finding it somewhat easier to tell my GP what I don’t have going on when asked….that will be mainly diabetes so far…I ward that menace off with threats of violence, a large whip, but mainly by a diet miserably lacking in anything that tastes even remotely gorgeous or even edible at times, but I digress…..EDS effects the connective tissues(Collagens) throughout our bodies, its the very thing that stabilises our joints holding them in their place, well in most normal folk anyhow….but that’s just one of the more simple issues to explain… the list is as Ive hinted, endless….here’s some more for you..Dislocations…yes the joints anywhere in our bodies can and will fall from their socket without any exertion manipulation or prior warning… Yes it just happens…poof!!!!(My favourite black t shirt has on the front My joints go out more than I do, (sad but so true)…i joke often about this and make light where I can, But it is infact extremely painful and terrifying…you never know when your going to be walking along fine one moment….the next up close and personal with a passing ant or worse,,an abandoned doggy deposit…this is again not only painful, distressing, but equally embarrassing….One of the key reasons I now live in trousers these days was due to an incident many years ago, where I unintentionally flashed my bright red satin lacy briefs to the whole of a returning five o’clock work rush hour, yes I lay sprawled across the pavement ….One moment I’m walking enjoying the late afternoon sunshine, the next my ankle just gave way and there I am, not only cut and bleeding but flashing half of Essex…trousers are not only a must but essential, my only comfort was I had on decent undies not my usual comfy pants……girls listen to your mothers😁

The skin covering our bodies is not only exceptionally soft(I’ve heard it described as velvet like) , but overly stretchy…also prone to tears, poor healing, scarring, puckering and last but by no means least stretch marks yay us, good to know stretch Armstrong could be a relative ….

Teeth and gums….

yes we still have them😁 , and thank goodness, or how would I eat my one true weakness( but that’s coffee of course, goes without saying) then there’s cake…..No some of us have teeth that over crowd at the front, receding gums, poor teeth despite years of good hygiene and dental care… tooth spurs, oh and best yet …our jaw can discolate or sublux during dentistry visits, it happens!…nice…don’t ask about pain relief, because Joy of joys it doesn’t always take…. Gotta love when the drill hits a nerve, you reach dizzying heights and see work that needs doing on the dentists ceiling…mouth full of jaw clamps, your asked oh did that hurt….oh hell no I’m fine…I just have a penchant for Artex….

Falling for you….

Cord tethering, (no not crochet or knot tying) severe spine curvatures, scoliosis, upper neck problems… Let’s set the scene for a sweet tale….There’s nothing more romantic to finish off that evenings wonderful dinner date, alone with the man of your dreams, Than an early night tucked up all warm and cosy, a softly lit room, wrapped up in each others arms with a episode or three of game of thrones😁😁😁😁😁….your man turn looks deeply into your eyes and says ‘do you have the tv remote on your side honey?’😊 I know, I melted right there…, Without untangling myself i turned my head slowly to the right reaching over to the bedside table, …….the next thing i knew im laying flat out across the floor…now our romance at this stage was still exciting, wonderous and new….but this excitement we could well do without…I shake my head, come too for real, look up to find one concerned Jesse looking over the side of the bed, down upon me….’ermmmm honey whatever I said or did you didn’t need to propel yourself out the bed to get away from me’….all I had done was turn my bloody head (to the right….too late after the fact to remember I can’t in fact do this,or i find out to my deep embarrassment…I pass out on the floor😁…this is not or never has been the meaning of falling in love……. It a good job we both have a wicked sense of humour…

Going potty …..

Or Pots….Postural orthostatic tachycardia syndrome…a condition in which a reduced volume of blood returns to the heart when standing from sitting or laying down…fun symptoms…sudden dizziness or light headed, fainting (always a favourite, noticeable heartbeat, palpitations, chest pain, shortness of breath, shaking and sweating….that’s without the other cool stuff..like feeling sick, diarrhoea,constipation,bloating and our old favourite cramping mmmhmmm….

Quite honestly there’s nothing it doesn’t effect, including early onset arthritic pain….most EDS sufferers go undetected maybe even throughout life..it’s easy done, my early pain levels were described by both parents and GPs as growing pain..the odd contortions and body movement put down to being double jointed….anxiety, phobias, just a nervy child….I was two for instance before I started walking, choosing to shuffle in an odd crab like motion around the floor instead… Upon seeing an old photo of my mother holding me up at about a year it became patently obvious why…my knees where overly large and facing inwards… I’ve no instep, and walk pigeon toed…since early memory there’s never been one day without pain..just hasn’t ..it’s as much a part of my life taking a breath…only I’m fond of that..

Most of what I know was thanks to research, joining forums, talking to others…in the early days I believed everything I went through, was normal, everybody felt the same..I was just more clumsy..lacking spatial awareness, suffering more childhood illness …when I was diagnosed by a therapist, I could have cried..because although hyper mobile joints just meant I was overly flexible in my book…when I started finding out more, I realised that was the tip of the iceberg, the way this was going to effect my well being later was to be harsh…don’t get me wrong..I would far rather go through it than the alternative..

On the plus side I’ve since learnt to realign and manipulate joints back into place..it leaves them slightly sore for a few days and there’s a real risk they will at some point drop back out but this is thankfully unusual..my Ribs slipping on the other hand, once that happens I usually have a few more episodes over the next few days and weeks…because that being the most painful of course wants to occur at will…😁.

X rated…

Yesterday saw me back at the hospital once again, yet another X-rays and wait while they establish there’s not much can be done…and I’m well aware this is something I have had to cope with and do.. as I said I know no different, having a sense of humour has been the biggest asset I could have, you need one while dealing with this…Next week it’s the physio or the rack for (the torture chamber) as I know it by…from there who knows….guess it’s wait and see…whatever your dealing with folks please look after you …take care now until next time 💜💜💜💜💜💜💜💜💜💜