Saturday, 24 September 2016

Bendable, poseable

So.

I have a new job. 6 weeks in and I haven't quit. You may raise an eyebrow but believe me it wasn't a foregone conclusion. I'm not going to lie about how hard it's been. The job is wonderful - and more about that at some future point in time because there's a queue of blog posts I've been too tired to write, about culture eating everything, work life balances, money not being everything, getting roped in to silliness, about walls coming down and being a happier, chirpier, sillier person who does a sort of nerdy spreadsheet and database orientated job - but this is about working with EDS and Aspergers.

Cos it's 4am and what else would I be doing ;0)

Oh yes, sleeping. Let's talk about that, shall we.

Both EDS and Aspergers come with a common symptom. A lack of proprioception. It means a lack of awareness of where limbs are in space and time. Well for me it does. I knock things over. I am clumsy. I trip up steps and downstairs. Until I knew it was an issue I fell down stairs at least once a year if not more. I've sprained each of my ankles more than 10 times in my life and had more X-rays of my ankles than I can actually remember now. I'm sure Accrington Victoria walk in centre know me by name. I walk into door jambs. There is a reason I ride a motorbike. There's an entire lane around me to be safe in. And somehow it's less of an issue. I've not overbalanced once on my bike in a year of riding - something my brain injuried mum also testifies to as a thing.

Anyway. I'm a bit flaily and all my physio has been dual centred - teaching me to be less flaily. This means conscious movement every second of every day. Before I stand up from a sitting position I have to think, right down to how I'm going to place my feet on the floor - or I'll dislocate bones in my feet. I have to think about how I walk, what my core is doing so my pelvis doesn't tip backwards and exacerbate my curved spine, where my knees are and are they going backwards...

You can't do that when you're asleep. You're off. Powered down. And that's kind of dangerous for us bendy people. We joke that at least we can't dislocate our boobs but it's not a joke - anything with a bone in it is at risk. I've sprained elbows, shoulders and ankles in bed. I've dislocated knees and fingers. I've woken with dead legs and arms or with hands stuck in a claw position.

And there is absolutely nothing I can do about any of this. I'm asleep.

Predictably, however, not for long. Dislocating things is painful. Not the kind of pain that bounces off happy. Not the kind of pain like a headache. Or even a migraine and I know, I've had a few of those too. And it's not that I can't deal with pain either - I've been walking around with heels 4 cm lower than my toes for years and just got on with it because I didn't know anything was wrong. I've ridden a pedal bike through a migraine. I've ridden 100km on my pedal bike and had to stop halfway through to have a cry because my back was spasming so badly. I am pig headed as hell and twice as stupid sometimes.

Dislocating joints hurts. I am embarrassed to admit that I have laid on our living room floor and screamed after dislocating my knee.

And then you start a new job. And you know that professionalism is crucial. Gaining respect and trust that you know exactly what you are doing is crucial. Being seen as someone who is strong and determined, who is disabled but relentlessly determined is crucial. Because you refuse to be seen as anything less. Because you have pride still, unbelievably, even when you've been reduced to a screaming crying wreck. Because you're human.

And you know that one day, inevitably, all these people are going to see the absolute worst of you. All your vulnerability and all your loss of control over the pain you try so hard to never let show. Because pride. Because people worse than you. Because professionalism.

Lack of sleep also makes the pain worse. Unfortunately. Pain bounces off happy. But a side effect of unstable joints that wobble all over the place because the ligaments are made of plasticine because faulty collagen is pain. So sleep is crucial to me. I have to sleep to be happy. To be resilient. To be able to put my face on, retain my dignity and not let it show. Hell, being happy makes me forget the pain is there, allows me to deal with it without even thinking about it. Happy is magic. Sleep is magic. Sleep is recovery.

So that's why one wrong move can land me in a & e. One wrong move can dislocate something so easily. And that's why sleep is crucial. And it's currently 4am and should be asleep because I want to go to an event I've been looking forward to for an entire year tomorrow (today).

But then. I have an amazing job with amazing people. My days are full of focus and concentration but also laughter and kindness. I have spare sometimes and whenever I do I give it to someone else. I don't mind - it helps me cope too, giving something out. I have self worth and self belief for the first time in years. I have so so much I didn't think I was ever going to have again.

So I guess the point of this is; if you hear me moaning about a lack of sleep, don't think I'm being dramatic or worrying too much or stressing. It's not stress. It's just a fact of life and one I'm okay with. But that doesn't stop me being apprehensive about knowing something will happen one day that will be embarrassing and pride denting and painful. I am human.

Monday, 19 September 2016

Paralympics

There is a cycle of acceptance for many things. Addiction. Depression. Grief. And disability.

The cycle, or circle is the same for all of them. Tediously so, at times, or so it feels. Everyone goes through it, everyone experiences it. Some faster than others. Some of us were born this way. Some of us acquired this way. This way is different by necessity, not by choice.

At times it can seem like choice has been removed. As though you will never have control again. You have to ask for help because nothing will happen if you don't. You have to be honest because nothing will happen if you don't. You can say goodbye to your pride, some of your friends, some of your aspirations and some of your ambitions.

Time passes.

You get help. The forces for good rally, slowly but surely. Some friends stay and some reappear. Some hobbies stay and some disappear. Sometimes it's unbearably hard and you don't know how you'll get through the day, never mind your life.

And then something changes. And there isn't a timeline on that. There isn't a judgement that anyone gets to make on that. Not unless you've been through it yourself. You'll be told that your pain is only worse because you're depressed. You'll be told to pull your socks up. You'll be told you're a downer and people don't want that negativity in their life. You'll believe those things. For a while.

And then one day you won't. One day, without noticing, you'll start to put the pieces back together again. Your life will be different. What you used to be able to achieve will be a distant memory. You I will find new aspirations, new ambitions, some new friends, a lot of new ways of doing things. You will take nothing for granted and no kindness will pass unmarked. The world will look different to you and it will be for the better.

You will find coping mechanisms. They will be many. You will find inspiration in the strangest of places, find yourself crying at the oddest of things. You will make decisions that before were incomprehensible, with a calmness and equanimity that you didn't know you possessed. You will find yourself, your true self, stripped as it is of ego, of expectations, of pride and irrelevance.

Some will find it in sport. Some will find it in new hobbies which become new jobs. Some will find new jobs that fit better. Some will find campaigning. Some will find writing. Some will find mentoring and supporting others through the long hard journey they've just clawed their way through.

Whatever it is, however it is, whoever it is, I believe that the Paralympics have their place in this. I believe that challenging peoples of views of ability and disability, of darkness and light, of assumptions and judgements can only be a good thing. The Paralympics are a brief interlude of acceptance and celebration that increasingly lead us to ask why?

Why do we have to have 'special' ad breaks?
Why are there no cameras at parasport events between those 4 year interludes?
Why is my television so bereft of role models in between those 4 years interludes?
Why do I have to be superhuman to be accepted, to be visible, to be worth something?
Why does everyone have to have a story?

In order for the increasing upward swerve of the Paralympics to have legacy, we must ask these questions. And we must answer them. Otherwise, a 4 yearly lip service becomes meaningless.


Tuesday, 28 June 2016

Hello {goodbye} world

It's 4am French time. I'm sat on a picnic table in a forest in Normandy. I couldn't sleep. Grammar isn't guaranteed. Ranting probably is, to be fair. 

The fundamental problem with a brexit, is this. 

We can't leave the Internet. 

A generation that didn't grow up with it voted to leave something you can't leave. I said a long long old time ago that the horse has bolted and you can't stuff it back unless it's dead. Brexit feels a little like trying to stuff that horse not only back into the stable, but asp trying to reanimate it. 

Zombie horses. Yup, there's an analogy. It's 4am. Well it is here. And so I'm allowed. And while we're talking about here, let's examine that. I'm sat writing this in a field in a forest, between two lakes on the edge of the Perche Forest in the Department of Sarthe in France. I take my ability to do so for granted, the same way I took my EHIC card for granted, our whizz through passport control for granted, the way I used an English bank card to pay the tolls at the beautifully designed toll machines for granted. 

I take a lot for granted, it seems. Stupid me. Like no one wanting zombie horses. Anyway. I'm on the Internet in a field in a forest. My keyboard can type é just as fast as it can type e. Perhaps that's a better example than zombie horses. But fundamentally the point is, I am connected. I can't disconnect. I don't want to. And to be honest, none of us under 55's want to. We're so used to knowing what we want when we want, we take it for granted. We are so used to fact checking and citation needed cries that we don't even think about it any more. We ask our friends on social media, we ask Parliament websites, we use open data, we do many many things to fact check. A lot of us don't even read newspapers any more - instead preferring to fact check ourselves, to try and find the truth of something without the unnecessary yet prevailing biases and agendas swarming all over our current media. 

We assumed the over 55's were doing the same. They weren't. They were busy in a disconnected world, where you don't end up working in the same place as a team of crack Polish devs. Or where the latest bright young brain in your industry has honoured your workplace with their presence despite being based by preference in Amsterdam. Where flying for a weekend break to Basel is no more deserving of comment than popping to the local beach for the day. 

They were busy voting to remain in a world which no long exists except in their imagination, coloured, blurred and distorted by rose tints, hindsight and the distance of decades. 

We took our connected world for granted. We took our access to knowledge at our fingertips, pretty much for free, for granted. And we paid a high price. But perhaps in some way, where technology or rather the lack of understanding of it (we will always be connected to the world now, in a far more fundamental and permanent way than we ever thought) has led us to this place, it can now lead us out? Perhaps we can now think about media and it's place in snap of national consciousness. Maybe we can think about how we spread citation needed. Maybe we can have a think about our responsibility as comfortable technologists with the world literally at our fingertips and how we use that privilege to educate and comfort. 

Just saying. 

Sunday, 19 June 2016

Have you danced around a maypole?

Well, have you?

The village in Somerset where I grew up was about as quintessentially British as you could probably actually get.

I've danced around maypoles. I've plaited corn dolls to show at the harvest festival. I've baked plaited rolls at school. I've been on a school visit to a farm to see a combine harvester in action. I've even visited a Cheddar cheese factory.

My primary school had one building, one portakabin. A garden and pond. And about 30 kids in it - the size of one class these days - 30 kids between the ages of 5 and 9. There was no other girl my age in the entire village. There were council houses, ex council houses and newish estates mixed with thatched cottages and a 20 room mansion next to a farm around the village green. Cricket was played every weekend during summer.

Sound idyllic doesn't it?

It also contained at least one father who was a paedophile. A young boy of 11 who moved in, raped a 6 year old, was caught and charged and moved away. Another boy who when I was 6 forced me back up against a counter in that primary school portakabin and forced me to kiss him. Yes I told my mother. Who told the school. Yet somehow that boy was able to grow up and be inappropriately hassling with my best friend on the school bus every morning because school was at least a 30 minute drive away.

Further down the road was we lived on - about 2 miles or so away was an abandoned airfield from the war which the local Sea Kings used for training exercises. On the edge of it lived a camp of travellers. My first experience with armed police was aged 10 (I think) when I came home from school to find a barricade just around the corner from our house manned by armed police who were looking for a gunman on the loose.

Then there was the local arsonist who was never caught who had a propensity for setting local barns full of hay on fire.

What's my point?

What, exactly, do you want to go back to when you say you want to go back? To an appearance of idyll? To a world which looked perfect if you tasted the icing but was rotten still underneath? Dry and crumbling to pieces, held only together by the pretty icing?

Perfect doesn't exist. Idyll doesn't exist. Neither can, because both contain people. Leaving Europe will not remove people's potential for evil. It will not remove bad people. It will just change the colour of the skin of the bad people, or change their accents. And in the process you will remove the counter balance to that evil - the good. The great and the good who come to our country and strive to change it for the better, contribute for the better, innovate for the better, code for the better, campaign for the better.

Balance is essential. Don't upset it in the pointless search for an idyll that you can only now see through rose tinted glasses. Let the light in - for without it the shadows will grow to fill all the cracks.

Wednesday, 11 May 2016

EDS & me

This month is EDS (Ehlers Danos Syndrome) awareness month. I was diagnosed with EDS Hypermobility in August last year. So I figured maybe it was time to share some of the ways that this random collection of letters has affected myself and my family and to try and shine a light into the wonders of what happens when the NHS is awesome. Because this is a tale of two halves. And the NHS is at fault, but it's also saved my life. A dramatic claim you might think, but one I believe I am entitled to make.

This post will be, I suspect, long. Grab a cuppa. Get settled. I'll begin.

When I was a child...

No wait, I should explain something first. EDS is a lifelong condition. You're born with it. The other types of EDS, of which there are currently 5 major ones, all have genetic markers which have been identified, I think. The type I have hasn't currently had a genetic marker identified but they're working on that. It most definitely can be a genetically inherited thing however, as my mum has it, as does my sister - she's just been diagnosed.

So I've had EDS all my life and never knew it. And oh boy does it explain a lot.

When I was a child, I was very active. I spent a lot of time hanging upside down because that was comfortable. I spent a lot of time being asked if the position I was sat in was comfortable as it didn't look very comfortable. It was. I spent a lot of time with cuts and bruises - most of which we knew the origin of, but in retrospect, a lot of which we did not. I spent a lot of time with either one of my thumbs bandaged and splinted - I sprained each one into double digits in the space of a few years. I fell off a swing one day (I loved swings, a very female Aspergers thing from what I can gather, see also hammocks for side to side swinging) onto cracked tarmac and spent a lot of time in A & E before not getting it stitched. The scar, to this day, is 1cm wide and 2cm long. It looks like no one else's scar.

It goes on. When I was 11 I suddenly developed massive vivid red welts all across my ass. It looked, my mum says, like I'd been sat on a screamingly hot grill wire. I had surgery and a general anaesthetic to remove 5 teeth and have a black stitch cut to get a tooth down from the roof of my mouth. I threw up blood after as the tubing they'd stuck down my nose had somehow failed to do its job. To this day I have a phobia of being sick - you try throwing up blood when you've got a phobia of blood generally.

The 'growing pains' started. Sat in classes trying not to cry at the pain and trying not to show it. I only failed once - the teacher made me feel like a complete idiot and I never lost control of the tears again. I stopped running because it was too painful. I was a good runner before then, anchoring relay teams in the 100m and coming in the top 10 of our 100 people year for cross country. I went to the County games to throw javelin. I stopped all of these things. Too painful. No one asked. I didn't bother telling.

In my teens I developed gastric problems. I wont go into details but I should really have known not everyone had crippling stomach aches which made it hurt to breath any more than a shallow grabbed breath and made sweat run down their foreheads into their eyes. I had to go for blood tests and it took so long to find a vein I was covered in bruises and looked like a heroin addict. It also hurt like hell. I asked around and no one else seemed to be having the same experience, but again I notched it down to 'you're shit at coping, just try harder and deal with it'. And so it went on and on and on and on. More and more systems failed. More and more weird things happened, that I now know to be weird but when you're in the middle of it you just don't pay attention. I started fainting randomly. I had heart palpitations at 14. I had to be careful how I got out of bed and to stand slowly, because otherwise I'd be flat on my face 10 seconds later.

At this point, I feel it very necessary to point out my mother was looking after my dad. He took all her time and all her energy and all her effort. She was doing her best to get help with looking after my dad because she knew we were suffering as a result and she did her best with absolutely zero help from anyone, from the NHS, from charities, from anyone. She was also suffering from her own medical EDS related hell which I wont go into but finally resulted in her getting it sorted 10 years after the problem had started after my birth.

In my 20's, I started spraining my ankles. I can't actually remember how many times I've sprained my ankles but I do know I can now literally sprain my ankle on a kitchen floor in socks if I'm not careful. It's over 20 times between them I do know that much - at least once a year, usually more. I had to have an emergency operation under local anaesthetic again for a spinal abscess . I'd left it too late because I'd simply put it down to 'put up and shut up love, you're just making a drama out of nothing'. And honestly, my pain signals were so messed up by that point that it just didn't hurt. Until the point where it hurt going over speed bumps on the bus and I couldn't sit on the floor any more (it's more comfy on the floor, trust me, I'll explain all this, the why's and wherefore's in a bit) and I figured I'd better mention it to my then boyfriend. Who took one look and said we should go to the out of hours doc on a Saturday, who sent me to  A & E after respecting my wishes of no ambulances. Armed with her letter I was seen quickly, admitted quickly and then left for 36 hours with no food between 8am and 10pm while they tried to find a surgeon. Not that I particularly cared because I had no interest in food. But anyway, I digress.

That wound - the nurse said it resembled a knife wound (we were in Hendon in North London, I guess she'd treated some?) - took 3 months to not need daily packing. It went on and on and on and on. And on. My notes got bigger and bigger and bigger. She wrote up what she'd done every day. In the end my wound started to heal from the top down and they had to burn some of the cells away with no anaesthetic. Yeah. To this day, I have a scar which looks like a 50p piece with a dent under it. It's ugly and horrid and I feel sick every time I feel it. I haven't ever looked at it. I'm nearly 40. This happened in 1999.

Whilst all this was going on, my anxiety was becoming more and more of an issue. Not helped by dumbass stunts like my then boyfriend leaving me in the hospital, visiting once and completely failing to tell anyone I was there - like my mother - and not even bothering to be there to pick me up, leaving that to my housemates, nevertheless, other peoples dickish behaviour aside, I wasn't well mentally either. I fought and fought and fought against it, and mostly managed to hide it and never let it show - that incident with the teacher had taught me well that public humiliation by authority figures was only ever one careless show of emotion away - but occasionally it would break through. Like the time someone thought it was a brilliant idea to send someone with a blood phobia on first responder training and they showed us videos and I ended up on a heap in the ladies toilets floor hyperventilating. Or the time someone in another job though it was a good idea for my confidence building to become a fire marshal and they showed us that video of the fire in the footballs stadium and I went home and bawled for half an hour. Try as I might, trying to keep a lid on everything sometimes just didn't work and it came out occasionally in grumpiness, irritability and curtness. I was icy cold sometimes because that's all I could show in fear of completely and utterly losing it.

Into my 30's. Still no diagnosis and no explanation for why I seemed to find life just a little harder than everyone else around me. Still beating myself up that I was shit and not trying hard enough and I was intelligent and smart and should be doing better than this damnit. Things got slightly better in the first half of my 30's before completely and utterly crashing out.

It started with a dislocated knee. Which dislocated 6 more times in the space of a month. The pain from one dislocation would ease and another one would happen. I went to the doctors. They offered my weight loss surgery. I went away again. I went back two weeks later and was finally offered an xray and some physio. By this point, a dear friend was reading my Facebook posts at the time and alarm bells were ringing. The words hypermobility and EDS started filling my timeline and my internet browser history. It was like being given a key.

It would take another year, possibly 18 months actually, I can't remember, before I was finally, finally, referred to a Rheumatologist and another 3 months to see him and be diagnosed. Inbetween, I would dislocate my left knee a further few times, the forefinger and little finger on my right hand would dislocate, I would start to have bladder issues which were no longer ignorable and minor, and have major issues with heart rate, dizziness and bending down and standing up again without passing out. I would read and discover than not everyone could feel everything the dentist was doing during their root canal because the local anaesthetic didn't work, that not everyone threw up after fainting, that not everyone had major temperature crashes every time they had general anaesthetics, that not everyone could see every blue vein across their chest and down their arms and in their feet, that not everyone could cross their legs then wrap their feet around their legs again, that not everyone got a tired neck which meant they had to read with their head resting on their right shoulder, and not everyone cracked and clicked and had joints which seemed to slip and side at will, especially their ribs.

So, what is the cause of all this? Why does this litany of seemingly unrelated and frankly bizarre information all add up to one label and one diagnosis?

Collagen.

Yes, yes, I don't look my age, well done. And yes, it is that kind of collagen and yes that is probably why I don't look like I'll turn 40 next year, and also why my mother looks nothing like her 62 years either. Genetics, remember?

But collagen isn't just, unfortunately, a thing that affects how old your skin looks. Oh how I wish it were. How I wish I could slap some anti-aging cream on my face and be done. That would be so nice. Nope.

Collagen affects everything. It's kind of systemically crucial. It's the main component of connective tissue. There are different types of collagen and which types are affected depends on which type of EDS you have. Hypermobility type, the most common of all the types, is affected by faults in type 1 and type 3, Unfortunately type 1 is the largest type of collagen in the human body.
From Wikipedia:

This is the most abundant collagen of the human body. It is present inscar tissue, the end product when tissue heals by repair. It is found intendons, skin, artery walls, cornea, the endomysium surrounding muscle fibers, fibrocartilage, and the organic part of bones and teeth.
So EDS affects the structure, processing or production of collagen and collagen is present in all these different places in the body. Which is why my medical history looks like a car crash of confusing symptoms to absolutely everyone I've ever come into contact with in the NHS apart from one chap who is my Rheumatologist and who thankfully studied under Professor Bird, one of the leading brains in this area - or was until he retired. Which is an increasing problem, but anyway.

So my Rheumatologist. Is amazing. That's the first thing I want to say. I saw one of his doctors first and explained everything and within 5 minutes he'd disappeared off to grab him. He asked me questions, we took a tour of my scars (I'd just had a teeny tiny minor surgery under a local anesthetic on my arm so I could show him what my fresh scars looked like - keloid i.e. all raised up and above the skin surface), we took a tour of my dislocations and talked about all the information my mum had written down for me about her and my sisters problems.

And then he said the magic words. 'I'm referring you to my physiotherapist. She's a specialist in rheumatology. She'll understand exactly what's going on and help you sort this out. We don't believe in surgery here, we think it causes more problems than it solves'.

And so my work started which is still carrying on. I saw the physio for 3 months between September and December before she got promoted and moved on. Through her I was referred to a Woman's Physio and then onto Urology for help with my bladder problems. I was referred to Occupational Health who sorted me out with a home visit so I could have aids and help in my home to allow me to do fundamental things like shower without collapsing in bed for 2 hours afterwards, and bannisters on our stairs so I could walk up and down stairs properly for the first time since originally dislocating my knee. But more importantly than that, she diagnosed me with wrist nerve compression and the OT (Occupational Therapist) has sorted splints and supports to help with that. My little fingers are at a ridiculously funny angle permanently thanks to all the dislocations so I have a latex buddy sleeve to sleep in to help them come back together. I have thumbs which drop down way below where they should be so I have thumb splints to put them back where they should be.

But perhaps the most important thing to come out of all of this is the last referral.

The Rheumatology Physio, whose name was M and who works at Blackburn Hospital is perhaps the greatest star in all this, even more so than my Rheumy, though he is a star, because in his team, and almost everyone I have mentioned is part of his direct team, you can see the sense of pride and passion that they come to work with, and that he has instilled in them. A team is nothing without its leader and you can kind of tell he's a bit awesome at leading them. Anyway, I doubt any of them will ever read this but just in case, cos it is the Internet I'll stop there cos I don't want to embarrass people,

Except M. I'll risk embarrassing her. Because she did something no one else has ever done before. She got me to talk about my weight. Not by offering me gastric band surgery when I'd come to talk about something else entirely. Not by trying to persuade me into the kitchen where frankly I'm such a liability it isn't even funny - I have burned myself on a fork in a Pot Noodle. No.

She talked to me like a human being, with compassion and gentleness. She earned my trust, listened to me in other things (I found bed based exercises quite tricky because I kept getting dizzy every time I stood up so we reduced the amount of them I did) and eventually raised the question gently and quietly. As a result of that talking, I self referred to the Healthy Minds service because the Rheumatology Psychiatrist was just about to go off on maternity leave and they weren't getting a replacement. As a result of finally managing to be honest with the second person I spoke to who phoned me back, I was referred to the Eating Disorder Service locally.

Last week I started a 6 week workshop set with the Eating Disorder Service.

Not an easy one to type that.

I don't have a diagnosis. The Clinical Psych I saw said she didn't think anything would be benefitted from it. What she did say was that the reason I was having so many problems was exactly the same as the reason those with anorexia or bulimia have them and so the treatment would be the same - to learn about myself and why I do the things I do and hope to manage those thing and eventually stop doing them in such a harmful way. I left the hour initial assessment feeling like someone finally finally FINALLY understood me without me even needing to actually say anything. She knew things about me and my childhood and my life without me needing to tell her. And that more than anything else made me realise I was in the right place. Labels don't actually matter. Fixing this shit matters. I have EDS, my weight is affecting it and exacerbating it even if it is most definitely not causing my little finger to dislocate or my toe nail beds to turn purple (yeah I just noticed them, must do something about that in a second). I have to sort this out. On my own. With my brain and my effort and my thinking and my trying.

And oh gosh it's hard. The first workshop, last week, was by turns brilliant and awful. So many realisations about how I am and why I am. So much stuff to process that I think it took me three days just to work through 10 minutes of it. But I'm so grateful and so glad.

So when I say the NHS saved my life...

I walked into the Rheumatologist's office on a walking stick, on the wrong anti-depressant medication which was turning me into an unfeeling zombie who was still depressed, with no hope and sick to the stomach of seeing specialist after specialist who would do tests, the tests would be negative, and they'd drop me. Back to the GP I'd go to see yet another GP and have to start explaining the whole damn rigamarole all over again.

I now don't need a stick to walk at least half the time. I sometimes need it because I'm tired. Sometimes I need it because a bone in my foot is out and it helps. Sometimes I need it and can't use it because my wrist is too painful or I've dislocated my finger. It's a tool. I use it when I really really need it. Increasingly I don't.

I've dropped 3-4 dress sizes. OT have had to cut an inch of my thumb splints because they were so big for me the velcro went over the edge of the other bit of velcro it was supposed to be meeting. My anxiety is under much better control thanks to the right anti-depressant. I'm getting out of the house a couple of times a week and managing to go for small walks. I'm still very tired a lot of the time and that's something that will need addressing if it continues but I've just changed anti-depressants and tapered of 30mg of Mirtazipine in a week so you'll excuse me if I'm a bit shot to pieces at the moment. I'm managing to attend a group workshop. I'm managing to do a little bit of housework.

Slowly but surely, I am getting better. Except this isn't of course, something you get better from. There is no cure. There is only management. But the team effort of all those lovely Rheumatology people at Blackburn Hospital has changed one really really fundamental thing.

I want to live.

I can never repay that. I can never adequately express what that means to me. So instead I have written an essay, because it is an essay of thank you. It is my story of EDS and me and it is only just beginning.

[To the Rheumy team: I know I've said my heartfelt thank you's to some of you and I know this post will embarrass you horrid should you read it but I felt that explaining what EDS care should look like might help those who seem to be struggling with it somewhat ;o)]



Saturday, 30 January 2016

Fess up time

It's time for me to fess up.

I'm autistic. And I create things. Yep. Me. I create things. I am a maker. I make things. And then I wear them. And then other people wear them.

I always thought I wasn't a 'creative type'. I looked at others with that label and I scorned them. I thought - wow you don't live in the real world. You can tell you don't come from a working class background. You can tell you've got money to indulge your creativity.

I was wrong.

Creativity isn't a thing. It isn't a label. It isn't something you make money from - though that's a happy by product. No. It's something you are. And it doesn't respect backgrounds. It doesn't respect class. It doesn't even respect mindsets. Because the truth will out eventually. And after 38 years I suddenly realise with horrified visceral horror that I am a creative. I create. Therefore I am.

Me and my creativity don't have an easy relationship. Truth be told, sometimes it feels about as comfortable as walking on coals. I hate it. I hate the 'creative process'. I hate that I end up sat waiting for Massive Attack to come on, frantically googling bloody fair isle alphabets while doing stitch counts in my head to work out if I can squeeze that word into that space. I hate that when I'm trying to sleep - an elusive state at the best of times - my mind drift can be interrupted by the perfect sequence and rythmn of words that absolutely had to be in that blog post that's been commissioned. I hate that I am the type of person who will fly, on a whim and a prayer, to literally the other side of the world for a day of meetings because that's what my brain needs right now.

I am engineer brain. I am rational. I am above this kind of crap. I am cold. I am zero and one. I am technology. I am circuits and networks and routers and switches. Except I am not.

I am not. I've been denying this part of me for 37 long cold years. I have been ignoring what my English teacher told me. I have been burying my head in the sand. I have been in denial. And I am silly.

Being creative isn't a bandwagon. It isn't an excuse. It isn't a badge to wear. It's who I am. With all my stupid empathetic loving too much drifting into words insanity. Being creative is what I am. As intrinsic to my core of being as breathing or eating or being warm. It's my life blood, the thing that keeps my heart reaching and beating. It's what makes me see. What makes me hear. It's what makes the word rush out of me, falling into the page in perfect order and perfect rythmn. It's what makes me cry at sunsets. It's what makes me stop at the top of a hill and wait until the twilight has fallen around me. It's what makes me love my other half until I wake every morning bereft again that he has left me. Again.

It is intensity.

My autism takes so much away from me. But in this? It gives. I am light. I am love. I am empathy. I am the cold dark moon and the sunrise that you will never forget for as long as you live. I wouldn't swap it for the world.

Saturday, 26 December 2015

Merry Xmas from the Invisibles

Hi. I'm an adult with autism.

I magically become invisible at Xmas. Did you know that? My autism is magically erased. Come the chime of midnight 24th all adults are magically cured - until December 27th. Then we magically appear again.

I could forgive this erasure if the same charities managed somehow to realise that New Year might be as stressful for adults with autism as Xmas is for children. But no. No. Then the thoughts turn to how children will deal with all the fireworks at midnight. Nery a thought is given for the half of the 1% who are over 18 at this time of year.

I am genuinely baffled. Because if you think Xmas gets easier the second you turn 18, you're sorely mistaken. Some of us have children - yes, that genetically perpetuated link comes from somewhere - and some of us don't. But it's as if we don't. Don't have children and don't have parents. Children and parents who expect things of us. Things we can't be. Things some of us try to be and fail and in the failing feel desolate and alone.

I am on a group on Facebook populated by adult women with Aspergers. You should see that group right now. If you work with or for people with autism you should be in that group already but I'm gonna take a wild punt and say you're not. Because if you were, you'd be changing your happy little messages about how to help little Johnny through Xmas to include big Johnny too. Since it's a private group I can't speak for everyone else. I can only speak for me. I don't like Xmas.

Why don't I like Xmas?

Imagine you have no control over your facial expressions whilst being eagerly watched for your reaction as you open every present.

Imagine having a processing delay and having to come up with some genuine sounding nicety abut that thing you just opened that has you genuinely wondering if the person sending it has ever even met you.

Imagine getting distracted by the texture of the wrapping paper or the print while all the 'adults' look at you like you're a child. Because you are.

Imagine being routine driven and every routine you have going out the window.

Imagine being quite careful about who you interact with socialially because of energy and people taking it from you then being forced to interact with people that are so irrational that when you get it momentarily wrong will forever remember that moment and refer to it 'jokingly' for every year in the future til you die.

Imagine not understanding the social niceties of the 'last potato' and who should have it and taking people at face value when they say they don't want it.

That last one? That's actually the worst. Because actually, every Xmas day is full of those moments. Moments when there is unspoken tradition. Moments when there is unspoken hierarchy. Moments of unspoken in jokes.

And you know none of them.

This is why today, my husband and I spent most of the day alone playing on the Xbox. It might look and sound sad to you. But actually despite only spending two hours with my mother in law - I count this day as a win. A win because those two tense hours went well. Because I didn't accidentally say anything insulting or wrong. But don't worry. There's still tomorrow when she'll come for dinner. Plenty of time yet for the inevitable discussion to come up as to whether my husband needs helps in the kitchen (he doesn't, he's majorly territorial and wouldn't let me in there if I begged, and if you've ever seen an aspie with timing issues in the kitchen, let me tell you it's not a pretty sight), for her to comment on my weight and me to bite down on explaining the intracies of what EDS does to your body and how it is the gift that keeps on giving, time for me to accidentally misread when she wants to talk and when she doesn't and annoy her by making her miss the bit of the show she really wanted to watch, eat the wrong amount of food or offer food in the wrong order, and finally insult her by misreading her signals as wanting to go home, try and make the right noises to allow her to and watch her face fall as she thinks she's a burden I just want to be rid of.

The thing is, she's not a burden. That's the truly awful thing. I want the company. I'm looking forward to the company. All I'm saying is, it's a mine field. One I could use help with.

But it doesn't matter. It really doesn't. Because I'm an adult with autism and I'm invisible at Xmas.

Oh how I wish it were so.

Thursday, 17 December 2015

Self; fractured

If I were to look in a cracked mirror I would see me.

All the things I used to be, the who I used to be, has gone. I am nothing like who I used to be.

I used to speed walk through life. I enjoyed nothing, savoured nothing. I achieved...nothing. Because achievement requires acknowledgement from those achieving. Without acknowledgement that achievement is naught but a scream in an echo chamber. I was screaming and no one heard.

Self  is a complicated word. Four letters. Easy to remember, easy to write. Not so easy to think about. What do I think about when I think about self?

Echoes. Of what and who I used to be. A shell that walked and talked and answered as expected. An automaton who behaves exactly the way everyone expected. I am not that person any more.

So what am I now?

Now. Now is for legs that work until suddenly I can't lift them. Now is for queueing that takes all my strength suddenly and without warning. Now is for sight that suddenly blurs without warning. For walks, little walks, 200 metre walks that mean more than 8 miles used to.  Now is for zipping around on my 125cc scooter and loving how it responds to my every movement. Steering with hips as much as with arms. I have incredibly bendy hips and riding my bike makes that a bonus. Now is for resting, before the storm that working will inflict. Now is for PIP tribunals and knowing I am less than 'normal' but so much more. It all depends on your criteria. Now is for appreciating what I have - a husband who is patient and who understands me, a few good friends who are likewise. Now is for posting 'is it just me' updates on Facebook and finding out its never just me. I am never alone. Now is for conversations about standing outside of showers even when we're in them and laughing about raj showers being the worst thing ever invented. Now is for grieving for a comrade fallen and acknowledging that there are things she didn't do, that were left undone that some day you will do. Now is for knowing you are broken but that 5 minutes of dripping sweat on the turbo trainer will one day be more. Now is for looking up, up at the clouds, up at the architecture, up at the sky and dreaming of the day you will one day touch it again. Now is for healing and trying, for physiotherapist appointments, splints and occupational therapy appointments, women's physio appointments and counselling appointments and post Aspergers diagnosis counselling appointment and appointments and appointments and appointments and appointments endless in their rolling around, necessitating visiting hospital and hospital and hospital and hospital and knowing every single one, every. single. one gets you closer to functioning as a human being again even if normal is a concept that got blown so far out of the water that somewhere you can hear Eris laughing. Now is for fighting. Fighting a body that wants to give in and give up. Fighting with glitter and pink and sparkle and love and everything good in the world. Now is for not taking all the tablets, now is for taking the right tablets. Now is for rehab and trying and fighting and grafting and grit. Now is for being a women and a warrior. Now is perfecting skills, old skills, lost skills. Now is for giggling into the night at the silliness and the beauty. Now is for remembering the beauty through the pain. Now is for embracing the pain and welcoming it and acknowledging it and understanding it before locking it away in a box and refusing to reopen it no matter the provocation. Now is for believing that I am the link, the link between the neuro typical world and the autistic world. The link that understands both. The link that says I am almost on the classical autism diagnosis pool but for my verbalisation. - no matter what the cost of that verbalisation. Now is for some days that are non verbal and some that are. Now is for believing in myself, believing in beauty and believing that there is a point to carrying on.

The future?

There isn't room. I am now.

Saturday, 28 November 2015

Downing on the do-gooders

I've been watching a lot of Criminal Minds recently. It helps. It helps because Reid and Garcia, obviously (and if it's not obvious you've not been paying attention - yes I can read that fast if I want to - I just choose sometimes not to these days because burn out). But it's also helping me think about monsters. And about the concept of doing good.

When I was a child, I went to Sunday Mass. I hated it. It was in Latin and I didn't come from a background where Latin was needed much (unsurprisingly) so the entire service was incomprehensible wailing and murmuring. Sorry Catholics. But that's my takeaway from your religion.

So anyway. I went to Sunday Mass. And I read a version of the bible that had super scary pictures in it that was supposed to be suitable for children but had illustrations that put Bosch to shame. No me either. Understandably, I preferred Wind in the Willows. But my take away from all religion, somewhat amusingly and naively given recent events, was that religion was just a reason, a thing to make it okay to want to be good.

I can't count the times I was intentionally bad as a child on my fingers. I got into trouble a lot at home but that's a different story and one I won't tell as it's not my story, really. But I never intentionally misbehaved. I was just an aspie kid and a bit random, a bit focused, got a lot lost in what I was doing, and time was genuinely this wifty wafty wavy thing I didn't understand too much. But intentional? Nope. Not so much. In the grand scheme of things I was pretty well behaved, all things considered, terror will do that to a kid.

But religion as a motivator for said behaviour? Nope. I just never understood it. I guess I'm not too good at imagining stuff I can't see. And the whole God concept? Too tricky. Unquantifiable.

But wanting to be a good person? That I could grok. I knew good when I saw it and I wanted to be it. And watching Criminal Minds has made me think a lot about the concept of goodness. Goodness and evil. Monsters and those who fight them. And I come to realise that what motivates someone to want to fight monsters can be many things. It can be a personal interaction with a monster. It can be religion. It can be a need to protect. All of these are valid. All of these result in the same outcome - that good is done.

And I come to realise that good doesn't care what your motivator is. The person who benefits from the doing of good doesn't care a jot either. No one asks what religion their nurse follows. No one cares whether the man driving the fire engine is of God or not. No. All anyone cares about at the crossroads of good and fear, of good and evil, of good and chaos is; did you show up.

It seems to me that the proliferation of terrorism cells, groups etc is an indulgence. It's a reflection of a world where the intersection of good and evil has become so blurred we no longer can see eithers reflection. It seems as if somehow we lost sight of what 'bad' is - killing in the name of - and in counterbalance lost sight of what to be good is - a deep seated desire to put stuff that the majority accept is wrong, back to right.

I wonder if the Ten Commandments were created in a similar situation, a similar feeling time to the one we live in now. We have dressed death in so many flags, in so many religions, in so many races and ethnic creeds that I no longer understand whether it is a human underneath the dress or a scarecrow. All I know is this.

Killing in the name of anything at all is still killing. And killing offensively is murder. I don't care who it is you're killing, that's a life you're taking. I get it's grey. I do understand that. But who made it grey? Did you?


Friday, 27 November 2015

Trippin' on the XX

Title in part thanks to Jamie XX who is my new jam.

It's a bit crap, being the 1% of the population of female aspies. But this isn't about this. This is about the awesome. Because there is and I need to remember that. I joke about my superpowers - but sometimes it's not a joke. I can do some stuff other people can't do. Here's some of them.

I can't imagine monsters. My nightmares consist only what I have seen and experienced. Copper cisterns don't grow legs and chase me down the street - a thing that apparently my husband had nightmares about. I don't. My getting lost dreams consist of getting lost only in somewhere I have been. My faceless monster dreams always have faces. I didn't get scared as a kid of things I had imagined because I imagined nothing. And I'm super grateful for that. This has a downside - I can't imagine what something will feel like or be until I am in it, feeling it and experiencing it. But this too has an upside - I don't ever look at a hill and don't climb it on my bike (when I could ride), or not attempt a 100km ride because I know it will hurt. I don't know it will hurt until I've committed. And once you're committed? Well it's too late to quit out, isn't it.

I have a photographic memory. Not long term, only short term. But I can put a book down and retread the last page from memory. I can close my eyes and resee a spreadsheet page in its entirety. I didn't know I could do this really until very recently so it's only come in handy for comparing stats on item upgrades in role playing games. I wish I'd known I could do it when I worked with spreadsheets. But it's never too late to use an awesome superpower and this is one of mine. When I'm well I can also recall word for word conversations that have been had up to 6 months ago - again of varying usefulness - ask my husband about that ;0) - but nevertheless, it's a thing that I can do and it comes in handy sometimes. Like remembering exactly what was or wasn't said during a PIP assessment.

I see things differently. I'm not just talking about processing either. What I take away from a scene is undoubtedly different to most others. I see detail. I spot the other things people miss. I remember vividly those details and take them with me. This means I take photos differently - I'm looking to highlight something I've seen in those photos that others may have missed. It lends itself to to different joy - I gain so much joy from watching snowflakes fall, from rain falling through a steer lamps glow, from the ever changing moving sweeping murmurations as they scatter and form above my head.

I need to be outside. Outside and away and ideally up high. This need has given me some of the most beautiful moments of my life. Sunrises and sunsets in silence. Deer and red squirrels and badgers. I've seen birds of prey swooping and hunting from the side of a hill that put me at eye height at the hunt unrolled before my eyes. I've been inside clouds and above them. I have seen so many beautiful things.

Because of my visual memory I never forget a single one of those moments. I don't need to consciously snapshot. Every moss covered boulder I've stood on to watch a waterfall crash to the ground. Every mosaic I've ever stood on. Every painting I've ever really properly looked at. All instantly recalled like magic for me to resee whenever I need to.

Animas like me. This makes wildlife parks a joy. But it also means a vet calls me a hamster whisperer, able to calm frightened and panicking animas. I can bring peace and calm because I understand the anxiety so acutely - a thing that perhaps could be a curse when it comes to humans, is only a gift when it comes to animals.

I have a fantastic aspie sixth sense. It has saved my behind on numerous occasions. I can't tell you why we shouldn't be in the middle of that crowd right now. I can't tell you why I'm stood on this bench while the crowd crushes around me. I can't tell you why we shouldn't walk down that street that we've walked down every night for the last year without incident. I only know we shouldn't and that I've been right enough times to know I should always always listen.

I have sensory overload. But I also have heightened senses. This means I am an epic spinner of yarn. I can close my eyes and feel the way the wheel works, feel just the right amount of twist that goes into the fluff. I am also an intuitive person when it comes to colour. I've never studied either. Never been taught either. And yet I just know when something will work and when it won't.

I am a fantastic driver. The healthy avoidance of others in my space translates to someone who always always knows where everyone else is, what they think they're going to do next and what they're actually going to next. I profile everyone, profile everything, threat assessing, yes, but it makes me hyper aware of situations unraveling and when I should be nowhere near that happening.

Being aspie is hard. Hard work. The world is very hard for us to be in. But it really does come with some perks and these are just a few of mine.