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?


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.

Monday, 23 November 2015

Girl, interrupted

The quietness of rage started during the pre-assessment process for ASD. 'You do have friends don't you?'

It's such an innocent question. On the face of it. I mean who the hell doesn't have friends in the 21st century? Who doesn't have at least 100 of them on Facebook, a few thousand followers on Twitter, a few more on Instagram? In such a hyper connected world where we share the minutiae of every living moment, how could we possibly not be positively dripping in friends?

At that moment, I laughed. It was bitter. It echoed emptily, as emptily as my life. I had no friends. Not a single one. No one to go for coffee with. No one to sit and natter with. No one to play board games with.

No one. Zero. It was the most hurtful moment of the entire process. A light shone on an empty world and an empty life. It wasn't to be the last. As the questions progressed I realised that second by second, every thing I thought I knew about my life was a joke. A fallacy. A holographic image destroyed progressively by a man I'd never met before and would never see again.

This is what the diagnostic process of ASD is. But if you're a girl, it's so so much worse. None of the questions speak to you. None of them resonate. All of them have to be thought of side ways. Take the collecting question. 'Do you collect thing such as stamps, insects or toy cars?' they asked me. I bit my tongue on the retort that I was a 37 year old woman. I'm good like that. Mustn't make a scene don't you know.

I just asked if he meant my collection of OPI nail varnish I never wore or the collection of MAC pigments that, equally, I never wore. Point made. Box ticked. On we go.

I left the pre-assessment feeling erased and empty. As if somehow, being autistic wasn't alienating enough, the professors who'd put this thing together had also erased my gender. I am woman hear me roar? More like I am woman, I'm so sorry. I've broken you're empathy quotient, your autistic quotient, I'm so sorry.

In the end I was diagnosed by a woman. A woman who wore as many rings on her fingers to twist and fiddle with as I did. What you thought they were for decoration? You idiot. No they're not. I was diagnosed as 45/50 - it couldn't have been more clear cut if it'd tried. No borderline case here, oh no. Definitely autistic. And yet the stupid kept on coming. 'You can't be autistic!!!' rang the cry. Because I his it so well? Undoubtedly. Because the hiding nearly cost me my sanity? Oh definitely. You will never know. There aren't words.

Instead there are words for what listening to other autistic women's experiences are. Oh yes there are. From family who refuse to accept it (it's genetic is a truth too hard to accept) to 'oh no you can't possibly be, you're nothing like my husband/nephew/brother/male friend'. All of if ridiculous. All of it invalidating. All of it fuelled by a perception of autism which is male dominated.

But thems ain't the real doozies. The real doozies are the letters written to occupational therapy asking if an employee has read a list of autistic symptoms and decided to emulate them because the employee can't do some tasks. The real doozies are the ladies told that they just have anxiety and should cease and desist from spending any more time with autistic people because it is 'fuelling their delusion that they have autism' - women who go on to be diagnosed as autistic.

If you want to know the definition of invalidation as a human being who struggles, who is terrified, try those. They are truths. I can't point you in those women's directions. They are otherwise intelligent, bright, shining stars of women who have been treated in a way which can only be described with one word.


And it has got to stop. This ridiculous fallacy that autism is male has got to stop. This ridiculous misrepresentation of what autism is in women has got to stop. This invalidation of who we are, how we are, and how we see the wider world has got to stop. We are an intelligent society. We pride ourselves on the fact that we accept gay marriage and are not bigots, that we don't discriminate, that we don't hate.

You are hating on us. You are erasing us. You are prejudice in your diagnostic questions and you are doing real harm to the women who are autistic. Your refusal to accept that we present differently
, that we look different, that we sound different to our male counterparts is removing help and support from us that we desperately need.

I don't know what the answer is but I will find it. Because this is removing the capacity to under stand, to be understood from so many women. And it wouldn't be happening if it were happening to men. I am tired of hearing this tales of woe and I am tired of being erased.

I am a woman. And I am autistic. And you're not helping.

Wednesday, 18 November 2015

On being fat

I've just read the fat geek doctor meme doing the rounds.

It struck me how lucky I am. Lucky to have found a specialist who looked past the fat.

I told him I'd lose 3 dress sizes. He asked me to continue to lose the weight. It's such a small thing that. Continue to. Keep up the good work. An encouragement not a condemnation. An acknowledgment that perhaps most people would put weight on if repeated unexplained injuries made you go from riding 100km to not riding at all.

I told him my knee was dislocating. I saw him open his mouth. I told him I'd had a sprained elbow since February and the fingers on my right hand kept dislocating. He shut it again. He asked me do all the usual bendy tests. He scored me 8/9. He didn't say gosh you're bendy for a fat girl. Others have. Oh yes, they have.

I told him sometimes the pain made me cry when I woke up first thing in the morning. He didn't tell me to grow a backbone. He didn't tell me it was the depression. Others have. He said I needed adequate pain management.

I told him I wanted to be strong again. I wanted my body back. He referred me to physio. He told me no surgeries. I told him no way. So he referred me to a rheumatology physiotherapist. A specialist in what I have.  He didn't tell me to go away and work this out on my own. Others have.

The physiotherapist has listened too. Listened and listened. We have pulled back on the bad weeks, adjusted things when the pain has been too much. She has given me the power to choose what I do and do not do. She has watched as I have fought my bodies bad coordination and she has waited as I have waited, for the black and white dots dancing across my vision to go away every time I've got up from doing the bed based exercises. She had listened to my love of pedalling and persisted in getting me back on my bike. She has accepted that walking is not as easy as riding and let me choose riding as my preferred mode of exercise. She has geeked about Harry Potter with me and listened as I tried to articulate a childish understanding of grief for a friend. She has never touched me unless absolutely necessary, she has never forced eye contact. She has maintained a bubble of personal space around me at all times and been patient when I have needed to process what she has asked of me.

Because of these two peoples ability to lsiten, to encourage, to persist in building trust, I am winning the battle with my body. My stomach regularly feels like someone is using pork claws on it. I am hungry sometimes to the point of going crazy. I am sometimes so miserable and in pain that I just want it to stop, please please stop. Sometimes my back spasms and the pain overrides my entire bodies control over everything. Sometimes my knee dislocates, briefly, and I yelp at the pain.

Sometimes it feels like nothing has changed. But mostly it feels like everything has changed because two people saw past the fat and saw the person inside it.

If you want to treat obesity, treat the person, not the fat.

Tuesday, 17 November 2015

The curious incident of the woman in casualty

(This is not my story. I am very close to the story. However, names have been changed to protect privacy. She deserves to have that intact if nothing else.)

5 years ago, in a County far far away, a woman lay in a bed in casualty in the A & E department of a very well run, well respected hospital. I know the latter of these things to be true because I know a nurse training partially at this hospital. She has nothing but good to say about it. Please bear that in mind during the following.

The woman was white, middle aged, reasonably middle class. Well educated through not in academic terms. Smarter than your average bear in every sense of the word. Well cultured and well read. Well spoken and well mannered.

She had also just split her scalp from ear to ear.

This woman rode her bike, and she rode it every single day. She has no car, the bicycle was her primary mode of transport. She wasn't wearing a helmet. She came down the same hill she'd turned down every single day for the preceding 3 years at exactly the same speed she always did. What had not been there every preceding day was mud on the road from construction traffic.

She skidded. She lost control of the bike. She hit a metal lamppost head on, at speed and then fell and knocked her shin and head on the kerb.

She called the ambulance herself. A passerby stopped, asked if she was alright. 'I'm fine' she said 'just a little knock' as she felt the blood pouring down her face and knew that this was not the truth. The ambulance arrived. She was loaded up. She was asked where her helmet was and answered that she wasn't wearing one.

In the following four hours in which it took for her to be seen by a specialist, she was asked again if she was wearing a helmet. She answered again that she was not.  She was asked twice if she wanted them to call anyone. She answered twice that she did not. She said she was fine.

She wasn't. The specialist was told she was wearing a helmet. No MRI was done at that time. She was stapled together, all across her head and let go with a shower cap. Why the shower cap you ask? 'To cover your head dear, it's quite a mess'.

The staples drifted. She healed from the top down. They had to burn away some of the cells that were growing in the wrong place. She wasn't asked if she wanted a local anaesthetic. If she had been she'd have simply answered 'I'm fine'.

She realised shortly after that she wasn't fine. She couldn't walk properly, her balance had gone. She had what was suspected originally as macular degeneration. It turned out to not be degenerative. So she just has a permanent blind spot in the centre of her field of vision. Her fingers on her left hand don't work properly - she has no grip. Her eyebrow underneath which nerves were severed doesn't move. It's the eyebrow above the eye with the not macular degeneration. Her personality changed - though thankfully only temporarily and she found herself becoming irrationally angry for no reason at all. She lost her temper quickly and randomly and felt like she had no control. She couldn't remember numbers and kept forgetting words and names.  She had a huge scar on her upper thigh from hitting the kerb which should have been stitched and would have been - had anyone checked anywhere else on her body for injuries except her head.

The MRI almost a year later explained a lot of these things. But she was offered no help and no counselling. No advice. No numbers for charities who help with brain injuries and those recovering from them.

When she was asked, she just said 'I'm fine'.

Her lasting impression of all of this is one of isolation, helplessness and frustration. She was claiming DLA to help with her problems. The final final insult to this women was the withdrawal of all help 6 months before she was due to retire - she was scheduled to move to PIP and was refused. The fact that she cannot grip with her left hand, experienced personality changes as a result of a brain injury, sight impairment and finally severe balance problems weren't enough to qualify her.

When I asked her why she didn't appeal, she said 'oh it was fine, it was only 6 months - the Job Centre were lovely about it and were very understanding when I said I'd timed how long I could stand for and how long I could sit for'.

Are you laughing yet? Isn't this hilariously funny. And gosh darn, but it can't possibly be true. Because that would be ridiculous, wouldn't it.

Every word is true as it was told to me 4 weeks ago. Yes. You may have guessed who this is that I'm talking about and she only told me this story 4 weeks ago.

This person, we are reasonably sure, is an undiagnosed autistic. And suddenly, to some of you, this will all make sense. Don't make a fuss. Don't be a problem. Don't draw attention. If you think this is extreme I am telling you it is not as someone who has literally relocated their dislocated knee 6 times rather than go anywhere near an A & E department. You have no idea, literally NO idea how terrifying A & E is to an autistic person, high functioning or not. My uncle has learned to sew his own sutures rather than go to hospital. This almost pathological aversion to the noise, light, uncontrollable chaos and people touching you without warning is entirely normal to me. I don't think we are alone.

No one asked this woman if her personality change was a result of the accident. No one asked her why she didn't want to call someone when she was all alone and terrified in that A & E. No one flagged her behaviour as worrying. I don't find that worrying. I find terrifying.

So I am asking you to do something for me. I am asking you to tell me whether you, if you work in the NHS, or if you know someone who does to ask them, I am asking you to please tell me what autism training you receive. Because I cannot in all good conscience sit on this story. I can't ignore it. I can't pretend it hasn't happened. It has. And it must not be allowed to happen again. The idea of that woman dying and no one knowing, no one being there to hold her hand (if she'd allow that which is debatable) because she said she was fine when every single last detail of the scene in front of those people in that A & E screamed she wasn't - I can't bear it. And it could have happened. So so easily. Too easily. And it's not fair. It's not fair on the nurses who if they ever read this will discover that so very nearly fucked up catastrophically and it's not fair on this woman. And it's not fair on her friends and family - even if she has so very few of each of those categories.

Don't get me started on the benefits side. That's so broken I can't do anything about it. I don't think anyone can. So I've decided to focus on what I can affect. Please help me do so.

Thursday, 20 August 2015

Writing it out of your soul

The following is written so that what comes after can come. I keep waiting for the after to arrive and it isn't, I suspect because this is bottlenecking it. I don't really want to talk about it, this is me being utterly selfish. I'm going to write some hard shit down and I'm going to walk away a little lighter. You might walk away a little heavier. I'm sorry. You have been warned.

You know it's chronic before they tell you it's so. Of course you do. You've lived with it for 5 years or so, the 'no this isn't quite right' turning into 'no this really isn't right' turning into 'lets just try this and see how you do' which then becomes a merry-go-round of something like 8 different specialists in 5 different disciplines until you listen to that friend who's being going 'you sound a lot like me sweetie' and you go to your doctor who you've now got an ace relationship and say the magic words 'my friend has this and it's got me thinking'.

For too many people that conversation goes badly. Doctors don't apparently like their patients comparing notes. I understand why, I understand that if it clops and canters it's a horse and not a zebra or whatever that silly saying is. I understand we've all turned into neurotic Googlers. But as someone who's gone way way way past neurotic Googling into avoiding Google completely because it tells you futures you can't deal with yet, I can honestly tell you I am grateful to my doctor. I almost hero worship her. She didn't refer me to rheumatology as fast as she should have done, no, but she was ensuring I satisfied some diagnostic criteria in doing so. As a result last week I was diagnosed with a chronic condition in 20 minutes. It was almost anti-climatic after 5 years of searching for the why's, the how's, the explanation that would satisfy my engineer brain and allow me to move on.

Except, as much as the NHS might like you to believe that diagnosis is the end of the story, it isn't. If only. Then you get sucked into the cycle. Every person with chronic illness knows it. Hell, I've already been through it twice in the past 18 months, I feel like the worlds expert. First there's relief, then there's anger, then there's sadness, and grief, (and fear, no one ever talks about the fear but it's there) and finally the quiet of acceptance.

Except I'm high functioning autistic and I've already been at least once around that cycle already since last Thursday.

And this is where the NHS starts to fall down. I've been offered no help with getting my head around this quite major thing, none at all. I'll be referred to physios, of course, who'll put me through seven levels of pain I didn't know I was capable of and I shant care a bit because at least it will be seven levels of pain it's okay for me to be in, unlike the last 3 or 4 lots of physio (I've been to physio a lot, it really should have flagged something up) which did more damage than good because I was undiagnosed. Not their fault. But then who's fault?

It will be left to my ASD counsellor no doubt to unpack how I feel about being diagnosed with a lifelong incurable condition which few people seem to know about, little research has been done, and which treatment extends to 'take enough painkillers to not cry in pain every morning/time you move and work as hard as you can to build muscles to keep your joints in place' which is useful and works but ignores comprehensively the other symptoms, which are not imaginary as they constitute minor criteria for a diagnosis. But that's no ones fault, is it, that somehow the things which proved I had this thing are no longer up for discussion when we talk about how we treat this thing.

Then there's the revelations that somehow all the not Googling but talking to friends had missed. 'How's your sleep?' asked the Specialist. I laughed. Out loud. Proper authentic knee jerk LOL'd. I tend to comment the one morning I wake up feeling better than when I went to sleep it happens so rarely. It's been happening so long I'd assumed no one slept well. I'd forgotten I ever did that's for sure. 'How's your neck?' A week later I am forced to admit I may have not been entirely honest in my answer that it was a bit sore, having forgotten entirely that occasionally it fails to hold my head up, and that it was, once, not so solid to the touch it felt like a brick, nor so painful to be touched it made me yelp.

Opiates don't kill all pain. I didn't know that before all this started either. I don't feel migraines any more. I don't cry with pain quite so much in the morning. But the bone and joint pain persists, it seems, through everything the pharmacist can throw at it. Heat is the only thing that takes it away but baths make my heart race and me fall down in a muscle wobbled heap so they're kind of a no no these days. Dry heat it is. If only houses came with saunas as regularly as they came with baths.

So much of this I've only learned recently. So much of it I've learned through trial and error. There are forums I should go and read, charity webpages which contain helpful sources of information and research. I should read them. I need to get over the idea I am not permitted to first. The problem is, when you've been tested for suspected MS and then when it wasn't that suspected Lupus, is that after a while, you almost believe completely that they're never ever going to find out what it is. So even when friends tell you that you even look facially like their friends with this thing, you still don't dare to believe you might have that thing. You join Facebook groups relating to the thing, so much of what's posted resonates with you, but you feel like a complete fraud for even joining the groups because you're not diagnosed.

It takes a while for it to sink in that you're no longer a fraud. Even longer to allow yourself to start reading all the help and support that's aimed at 'people like you' because inherent in the reading of it is the acknowledgment that you are 'people like that'.

I wish there was some kind of post diagnosis website the NHS had to send people to where all this was explained. Where you were reassured your feelings were normal. Where you were told what to expect, how you will feel, how you will want to stop feeling. It's such a simple thing, knowing someone has been on this road before you, way before you, and they are still on the road, they haven't fallen off it, and you wont either. The assurance of not alone. The echoes of someone else's battles. The sound of help at hand should you look like your path is heading towards a cliff.

I suppose then, that at the end of all this explaining and self pity, of this soreness and exasperation is a plea. If you attend any kind of NHS focus group thingy, or whatever, could you suggest it? Because I think the time when I may be able to attend those groups myself as a functioning disabled person may be quite some way off and it'd make me feel better to know some good came out of this stage of the cycle. This stage that doesn't have a name by the looks, though I suspect fear would be as good as label as any.