50 Shades of EDS

The day the hit, chick-lit, mucky movie '50 Shades of Grey' was released in Cinema's, my OAP Bed Raiser arrived from Social Services.  'OAP' is not actually part of the name, I just add that in the same manner I call anyone under 20 years old, a 12 year old.  I exaggerate, its one of my things but men love it.

Eventually, Id need the raiser to help me get in and out of bed, but so far, I'm managing to do that myself. It does help that I've a four poster bed, so can hold onto bedposts when needed.  At present, I mainly need the raiser to stop me choking to death during the night.  After waking up many mornings, with blood on my pillow and a mild panic that someone had got in during the night, hurt me, then politely locked up again, so the place was safe and secure before they left.  These bizarre thoughts often pass through my mind but even Arthur Conan Doyle would admit, the reality of my situation/life, is improbable, often even illogical but its real, its my world, my life.  Turns out no one is hurting me during the night, other than myself, my own body, my genetics.  I'm like a different person at night.  I swear, I can pass for twenty something, for a few hours of most days.  Yet, fast forward a few hours and I become an old woman, with the body of a failing 90 year old, unable to move, breathe, speak, socialise or interact.  A little bit like 'Melisandre' in Game of Thrones, yet without the immense, jewelry (bummer).



So a couple of volunteer, pensionable (yet very sprightly and physically able), gentlemen brought in my new bed raiser.  As I had a four poster bed, it was fairly straightforward to fit (you need a base/foot board as well as head).  The guys, fit it, tested it, left me the remote and went on their way.  I had a brief palpitation, thinking that this is not the kind of heavy equipment, I was used to operating in my bedroom and generally rocking back and forth, sighing 'what has become of my life'?  A decade ago, I was swinging from chandeliers, now I can barely get out of bed... weird.

It was prearranged with my BFF, that we'd go to watch '50 Shades' as soon as it was out, in the day (as I cant get out at night) and have lunch and make a bit of a 'day of it'.  I used my 'Disabled Cinema Users Card' [https://www.ceacard.co.uk/] to get my 'Carer' in for free and after a lovely  lunch, we enjoyed the film, with my mate cracking me up throughout as she covered her face and peered through her fingers at every 'naughty' bit whilst I proudly proclaimed 'I've done that, I've done that, I've done that - wouldn't bother doing that again its rubbish' type commentary and capturing my mates constant facial hysterics continuously on my camera. It was hilarious (and I don't just mean the acting).  After I was dropped off at home, I went straight into my bedroom (as I practically live there).  I went to draw the curtains to undress (it was around 3.30pm and I was spent).  As I passed the far side of my bed, I noticed something on the floor.  As I approached, I saw somehow a Cable Tie had found its way onto my carpet, next to my bed.  Weird, as it definitely wasn't there when I left, even weirder, I'd just watched '50 Shades of Grey' with all its cable tie content.  I was fairly exhausted (as going out, even for a couple of hours does that to me), so my brain was not functioning as quickly as it should.  Putting two and two together, I assumed my friend must have let herself in (as she has a key for emergency/caring needs) and left it as a joke.  It was very relevant as we'd just watched the film, but she'd given me a right fright! The pure banter points alone, were worth the initial anxiety though.  She'd got me, she'd got me good.  I hated to admit it but that was hilarious, at my expense but hilarious, I could only wish I had such banter game.



Running with the joke, I took some photos with the cable tie, even hung it off my nose, in order to send to my friend and upload to social media, detailing the hilarity (cos that's what we do these days, right?).  However, as I hung the cable tie on my nose, I noticed a rather pungent stale fish smell.  I stood there for some time, with this cable tie on my face, just sniffing, trying to work out what the smell was and where it came from.  Then it hit me!  I rang  my mate, hysterical, to confirm my worst fears... she hadn't let herself into my flat, she hadn't left any cable tie as a comical and apt joke, she had no clue what I was talking about and I realised, (the horror, was slow to set in) but I realised the cable tie must had fallen off the new bed raiser while I was out in the cinema and that indeed the 'new' bed raiser was only new to me! It had come from Social Services and therefore clearly had been used many times before, jeez, people had probably died in their bed, on top of this piece of equipment that was now in my bedroom.  The smell of musty fish, was exactly that - 'Eau De Old Woman' (not all old women, no disrespect meant but you so, know what I mean) BLEURGH... and it was on my face!

I promptly bleached the whole damn thing, while retching profusely...oh what fun I had! 😂🙈 #50shaesofnogood

Social Media and EDS

Since being diagnosed with EDS (Heds), I’ve found the greatest support and education from others with the syndrome, via social media. In particular, I joined Instagram for the first time and found that, to be the best medium of social media for my needs. It's far easier for me to navigate Instagram and interact on it and I find it far less negative than other social media platforms.  Facebook, for example, is a far more 'personal' platform and affords unlimited access, to provide feedback, opinions and sadly, also, negativity.  I took great comfort, from joining many EDS support groups on these platforms and following other individuals in a similar situation to myself, sharing information and support - we're a community... right? Not that easy, in practice though. We’re a community alright but it’s like a community governed by a corrupt, twisted, uninformed, faceless entity, that constantly contradicts itself, cannot agree on anything and consistently sets, members of the community against each other. Whilst, I’m no expert on genetic conditions (jeez, I’m not even an expert on my own and find most who claim they are, to be misguided) and I, in no way claim EDS is the worst of conditions to exist in the medical world but I’m honestly struggling to find any diagnosis as potentially contentious and problematic as EDS!

The community is understandably, cautious, concerned and at times even 'cagey' - as I type this, I’ve literally just had to prove my diagnosis to a social media group in order to be 'vetted' to join a social media page/group. Now, I understand this caution but find it surprising and a shame, that 'we' feel the need to do this. We seclude ourselves, in the community, in order to protect our 'fragile' selves from non-believers, trolls, aloe vera and juice plus pushers and anybody else who may potentially 'zapp' our already lacking energy levels.  Yet, how does this seclusion, aid raising awareness outside of the community? If we seclude ourselves and cut off others who differ, are we not ensuring we will always be and need to be secluded? Even within our 'community' I find any difference of opinion, medical advice, treatment path or lifestyle and even look, can alienate and sadly exclude, with some people inevitably always comparing and finding fault. Why do we compare ourselves? You may feel like a Zebra but what if I feel like a Donkey? 

Can we still not reside within the one EDS community and support each other, without comparison and the bitterness that will always follow such comparison? Another member may look at me and think, 'she's got it easy, she can’t be anywhere near as bad as me, looking like that', a none wheelchair user could look at a wheelchair user and think 'sitting in a chair looks so much easier than I have it, I wish I could get off my feet all day, every day and be wheeled around'... both statements are ignorant, so why even compare? We know nothing of what the other person experiences, other than, they experience common ground with us, so why not concentrate on that and build on similarities, cementing our community and allowing everyone to feel supported and welcome? 

I feel moved to type this today, after seeing the copious response and understandable, yet misdirected and possibly misinformed backlash regarding the much anticipated '2017 EDS Classification' aka 'nosology' and the crux of the problem seems to be twofold. Firstly, part of the information has been prematurely and very definitely, inappropriately 'leaked'. As its only part of the whole, which is not due for release until next month, we can all assume, standing alone, this information may lack context. However, the wide spread anxiety, this can and has caused, was inevitable with such an unregulated 'leak'.  No one involved would have wanted that leak and are not to blame. The person who 'leaked' the document in the first instance, is responsible for the situation, the 'community', now sadly finds itself in. Regardless, the second part of the problem seems to be one, that would likely remain (to a lesser degree) even when the whole document is released in March 2017. As we all differ, all have different EDS symptoms, medical professionals, levels of support, understanding etc, it was always inevitable, that some would not be happy with this document. It’s impossible to cover everything and with the best of intentions, all anyone can ever do, is their best, with the information available to them, which sadly relies on statistics, medical data and more, that can be flawed but you need a start point. Notwithstanding that, I fully understand and can empathise with many who are now concerned about what they've read. On the face of it, I personally, shouldn’t encounter too many irresolvable problems, from this 'Classification', as I was already formally, diagnosed with EDS and get copies of all my medical correspondence, so even if I couldn’t access my medical records, I always have that written diagnosis and I don’t believe that can or would be taken from me. I can however, empathise with those who fear exactly that, as within the past month, my GP has tried to get my Consultant, to 'reclassify' my EDS diagnosis to Hypermobility, citing, the information contained within this very '2017 EDS Classification'.  This alone, worries me greatly and has caused me untold stress and reduced function. Yet, neither my consultant, nor any other who wishes to retain their medical respect, would ever be pressured into contradicting themselves and their expert medical opinion.  Yes, medical professionals (especially GP's) can be dismissive and unhelpful but there is nothing in the leaked document, that leads me to believe anyone with an EDS diagnosis would either lose it or have it amended to a 'lesser' perceived condition. However, I do acknowledge the problem it could (not would but could) present for those currently, in the process of being diagnosed or to be diagnosed in the future and those concerns should be heard with compassion, where abuse is lacking (no matter the distress, if people want to be abusive or 'troll' they lose that right and respect, in my opinion). I don’t dismiss, the stress and anxiety many now feel as this document was 'leaked' without context.  As a qualified Psychotherapist, I can assure all, this reaction, is not only real but was completely anticipated, hence why such documents are given a formal release date and how they are released is meticulously planned and managed. Sadly, due to one individual, this didn’t happen on this occasion but we cannot just blame anyone involved with the document, nor can we ignore or eradicate, the positives that may come from this document and the hard work that went into it. For one, from the limited information, I’ve viewed, today, I find some comfort in this new 'classification', which, helps me both understand and explain, that family members who may be hypermobile, have fibromyalgia or have other elements, similar to myself, that there is tangible proof, that they can have an element or issue that I suffer from, without fear of having EDS like myself. Yes, of course we should still be vigilant for familial links etc and always monitor children especially and make sure the whole family's medical professionals are aware of the genetic condition being present, the new classification does however, afford me a degree of perspective.  I only speak for myself here but there are positives already to be found from the 'classification' and whilst some problems are inevitable, we truly do not know what they are yet.  Many, like me, may have panicked understandably but unnecessarily, whilst the fears of others, are very real and justifiable and should not be mocked nor insulted. I do not believe, if we had a more structured community and understanding of EDS, medical evidence/information/support we would be in this position.  Once again, with this disease I feel this situation may be unprecedented.  This shouldn’t have happened but we are where we are. There's a phrase I use, 'One person's mountain, is another person's molehill', meaning basically, what is an insurmountable trauma/task for one, may be a 'walk in the park' for another person.

Our personal differences, should not allow us to lesser, those of others. Today, I once again, saw our community 'turn' on each other and vent inward, directed completely at the wrong person. No matter, your belief, opinion or fear here, that one person, is a fellow EDS'er with all the problems we all encounter (no matter what she looks like, or how big the smile, she no doubt forces on, appears), stress etc will impact her health and we should all be mindful of what we inflict, whilst trying to protect ourselves. We must hold each other up and stand strong, together, as one herd, with many, many, many different voices. 

Today, isn’t the only time I’ve witnessed such a backlash, against another EDS patient, whose mere crime was trying to raise awareness. I’ve been uplifted this past year by the amount of programmes featuring EDS. From 'Coronation Street', to 'Grey's Anatomy', to 'DIY SOS' and 'Jeremy Kyle's Emergency Room' - we 'Zebra's', are all over the TV right now, if you know where to look. In the past 12 months alone, I feel that awareness like this, on mainstream media, has probably increased, by around 100%. Whilst, we still need far more awareness and no one show, or patient, is ever going to cover all areas, surely we should, as a community, be applauding these patients and shows? If not, what incentive do we give others to try?  I, like they, probably feared and anticipated a bit of backlash, from people who do not have EDS and are ignorant to it but I never anticipated, nor I’m sure, did they, the backlash they would feel and receive, from others with EDS.  Yet, on every occasion, I’ve witnessed the patient/actor getting abuse and trolled, for not 'doing enough', or not mentioning "EDS" enough or in the 'right way'. Firstly, I’m sure were all aware of the fact the participants will not control the 'edit'.  Secondly, what is the 'right way'? Surely, we'd all offer the information we possess, mainly about ourselves and some about the condition as a whole and the other types or how others with our type may differ? I don’t know about you, but I’m usually too exhausted, to explain how I feel and what's happening with my health/body, so I applaud anyone who makes the effort to do just that.  To date, I’ve never met another person, exactly like me, with or without EDS. None of us have the same stories, history or experience.  This diagnosis, won’t change that, so, don’t expect it. 

I only speak for myself here and not for anyone else mentioned or otherwise. I'm sure some will take issue and/misinterpret what I say - if nothing more, please be content that it was written from my perspective alone and with love. Be kind to yourselves, be kind to each other...