Wednesday, 29 April 2015

The stick's not for decoration

I walk with a stick. It's not for decoration. But you'd be amazed how many people think it was.

I didn't always walk with a stick. I wasn't always incapable of walking up stairs using both my legs. When climbing stairs, my knee, ankle, and sometimes the bones in my feet didn't used to crack. I used to be able to wear sandals without my right toe trying to dislocate. I didn't used to know that a tin can on its side can put dislocated bones in the bottom of your left foot back in place. I didn't used to know the exact sequence of standing on tip toe whilst wriggling your ankle that would stop the randomly dislocated foot bones going into your ankle bone go back into place.

I didn't used to process my little finger dislocating and relocating again in seconds as 'stinging a bit'. I didn't used to have such screaming pain as the muscles in my palms contracted every morning that my finger dislocating as I half woke barely registered on the pain scale. My spine didn't used to crack, my neck didn't used to struggle to hold my head up. My left eyelid didn't used to sag worse and worse the tirder I got and I didn't used to have blurred vision like my toric contact lenses had shifted so they didn't correct my astigmatism even when I was wearing my glasses.

I didn;'t used to carry a letter from my GP explaining that I am autistic and my joints 'spontaneously dislocate' and in certain situations I needed a carer with me at all times. I didn't used to be unable to bend down for longer than a few seconds without fainting - or sometimes feel my heart rate race away after a period of sitting down, or it doing the same thing 20 minutes after I'd gone to bed leaving me feeling like the bed was falling away from underneath me. I didn't use to heal quite so bizarrely nor be covered in random bruises or broken capillaries. I didn't used to have screamingly blue veins up my arms and across my chest. I didn't used to have Reynauds so badly my entire hands go white, the skin puckering and rippling where the blood has disappeared, making them look like a corpses.

I didn't used to have to wear lipstick to cover my blue lips, or to make me not look so pale and sick. I didn't used to have to avoid shoes with a heel. I didn't used to have to psych myself up for the inevitable pain each morning as I stiffen up each night - each movement carefully measured and braced for, the final act of standing resulting in swearing. I didn't used to have to think before I stood up, both to make sure I didn't get dizzy and sit straight back down again, or that some bones had become misaligned whilst I was sitting so that standing pushed them out of joint. I didn't used to have to be careful putting shoes on in cases it dislocated my knee, or the bones in the top of my foot. My right lower rib didn't used to float, meaning it slides when I bend down when sat down, before sliding back when I resume an upright position.

I didn't used to react so badly to sticking plasters. They certainly didn't used to take all my skin with them when I pulled them off. I didn't used to have to be so careful of shampoos in case they rendered my scalp and itchy irritating mess. I didn't used to bump into things so much. I didn't used to sprain everything so easily, turning ankles in socks on our kitchen floor, or spraining an elbow just by sleeping. My little finger didn't used to stick out at a funny angle because I've now dislocated it so much it's not going back into its socket properly.

Life used to look very different. I didn't know I was 7 out of 9 on the hypermobility Beighton score. I didn't know I was autistic. I didn't know anything as it turns out, and life is very different. Not because I do know, knowing doesn't change the facts. All of the above are facts. Cold. Hard. Immoveable and inarguable with.

The following is how you make me feel about all this. You make me feel like a failure. Ashamed for struggling with all this. Ashamed to be ashamed that my illness is now on my face, writ large and obvious for all to see. Ashamed that I can no longer choose to leave the stick at home and pretend everything is okay. Ashamed that even though dislocating my finger stings a bit, that the pain from everything else is so unbearable in that shadow place between sleep and awake that I cry out with pain and I dream I'm crying out in pain and then I wake and I actually am. I am ashamed that there are days, rare, perhaps 2 or 3 in a month where all of this gets on top of me, and the brave face I put on to the world slips. I am the woman who after listening to the scraping of a scalpel inside her left arm for 10 minutes will go into the loos and cry alone rather than letting on for a second to the doctor and her assistant anything is wrong.

I am the girl you see with her eyes closed breathing slowly with a look of pure concentration on her face as she deals with the pain of another dislocation or another bone clicking back into place. I'm the girl who was on the train reading the newspaper at 90 degrees because her neck simply couldn't hold her neck up any longer. I am the girl you see getting off the train and waiting at the side of the platform with her case, waiting for all of you all to go by at your normal pace so she can bring up the rear and hold no one up.

I am considerate. I am controlled. I am proud. So very proud. And I don't let any of you see.

Shall I tell you what this gains me?

Comments. Oh the comments. At a convention this weekend we got told by a volunteer she'd kill for a wheelchair right now.

The assistance buggy I was in on Sunday night being taken to the train at Euston acquired a joyrider 'just going for a joyride' he said.

The chap, also at the convention I went to asking me to sit on a chair, with rows and rows of people stood behind me, on a major thoroughfare.

The comment by an attendee that 'I don't understand why they came, they should have know it would be hard'.

The comment by a friend 'make sure the whinging is far, far outweighed by the good days'.

None of you know. None of you. So here is me telling you. You see my stick and you see someone 'not quite disabled', I'm sure. I'd be in a chair if I was actualy disabled, you think. Since you're obviously not, suck it up. If you think it's going to hurt or be difficult, stay at home, shut up, don't moan, don't whine.

I'm sick of being silent. Being silent makes you invisible. It sucks the life out of you, actually. Suffer quietly, if you're going to suffer at all. Don't make a fuss. Don't hold people to account for what they deny you, their ignorance and their misunderstanding. Well isn't that terribly British of us, to expect people to have a stiff upper lip, even in the face of a body which is slowly falling apart. Don't say anything, deal with it on your own. Don't mess up our timelines and our lives with your pain and suffering, we're not interested.

Well. Some of us, the evidently weak and pathetic, occasionally we need support. We don't have perfect families and perfect friendship groups. We can't just call someone and ask someone for coffee beacause we don't have those kind of friends on the end of the phone. The web is our friend, it contains our friends, it contains our support. Connecting with other people who understand is all I've got. Sod sympathy, I don't want you sympathy, sympathy doesn't make the pain go away. The only thing that is making this manageable is knowing I am not alone. That there are people who care - to post cute pictures, to send hugs, in notable instances to send books containing explanations and wisdom. It's more than the NHS has managed to give me so far.

And yes, I am angry. Angry at myself, angry for staying silent and being so terribly British about this. I am hurting. I am suffering. And every single day I put on a brave face. I make the doctors job 'so much easier' by taking the weight off her. I get the assistance guy at Euston thanking me for being a decent human being and having the same ethics and moral codes as he does. I get volunteers telling me 'last bit to go hon' as I re-enter the convention because I want to be there and I'm not going to let this shit beat me, not going to let this stop me from having fun.

I am autistic, my joints spontaneously dislocate, I am in chronic pain every second of every hour of every day, even when I am sleeping, I sometimes have ridiculous levels of anxiety.

I make people laugh, I am happy and shiny at them. I am a good friend, a half decent not auntie, loyal, fierce and a warrior.

You see every single day I could choose not to get out of bed. And I do. And sometimes, I go and do awesome things that take every ounce of strength and determination I have and I do it anyway. So don't you dare tell me I quit. Don't you dare tell me I can try harder. Don't you dare tell me I shouldn't have come if I knew it was going to be this hard.

I am a human being. I have some challenges. And I am a warrior.

Thursday, 8 January 2015

We need to talk about obesity

It's that time of year again. The one where Channel 4 and Five get bored and start airing programmes which veer too far across the line from education into mockery and freak show.

Yep, I'm  talking about the all the fat programmes which seem to suddenly have hit the air. In fact it's almost so co-ordinated that the cynic in me does idly wonder if it's a quietly manipulative co-ordinated strategy emanating from the 'Behaviour Change' unit in the Cabinet Office.

So here's the other side. This post is entirely driven by the seering honesty of Tom Pollock's which you should read if you haven't though I warn for triggers if you struggle for whatever reason with details of an Eating Disorder.

Yep. A bloke wrote a post about his eating disorder. And he didn't pull any punches. What's hit me so hard in the stomach about this post? I've met the bloke in question. Briefly. And because I had at that point read the first part of his most excellent young adult aimed book trilogy, I gibbered, made a complete tit of myself and ran away rather quickly.

I looked at him and saw successful. Together. Confident. Like Tigger bouncing all over the sci fi/fantasy con I was at - every time I saw him he was the life and soul.

And then I read that post and I realised I'm still pretending. And I think it's about time we all stopped because it's not doing any of us any favours. Some of us are really good at acting. Acting fine, acting confident - essentially being performing seals and then crawling home after a social occasion feeling scrubbed from the inside out. And yet still we try. Still we perform. Because we don't want anyone to see.

So see me. I've spent almost all of my 20's and 30's trying to be invisible. Shall I tell you the best way to be invisible in this world? Be fat. It's ace. No really. Apart from the abuse shouted out of windows, or the tuts at your food basket in the supermarket, no one notices you exist. Barmen see straight through you, bus drivers wont meet your eyes, and doctors act like they'd rather do anything else in the world than look at you. Ask them about something which requires and examination and you can tell you're the last thing on earth they'd like to touch. But you're invisible.

This means you don't get whistled at, which used to make my shoulders tense immediately and me speed up. You don't get beeped at when you've made the mistake of wearing something out of the house that looked fine in front of the mirror but maybe that hemline is a little shorter than really it should be. Like above your knee. By an inch. You don't get people shoving their hands up your skirts on the underground - thank god for tights. You don't get men encroaching on your space on underground trains by slowly leaning further and further over to look down your top. You don't get taxi drivers offering to do creepy uncomfortable things for a free ride home in the cab. You don't get constantly harassed on dance floors when all you want to do is close your eyes and disappear into the music. You don't get asked whether you've got any drugs every 10 minutes either. You don't get asked where your top is from in bathrooms by women you've never met, but you also don't get asked for your phone number as you leave the same pub and then followed to the tube station.

I could go on. And on. And on and on and on and on. I was, when the right weight, rivalling Marilyn Monroe for her measurements. There is no 'subtle' way to dress when your tits are sticking out as much as your ass and your waist is disappearing in the middle. Shirts gape. I couldn't afford decent tailoring. Tunics which took the eye away from top and down to waist didn't exist. Skirts were either short or in M & S. There wasn't the internet where you could find your style and stick to it. You shopped on the high street or you didn't damn well shop at all.

I didn't know how to deal with it all. Moving to London the first time when I was 21 was by turns the best thing I ever did but also the worst. I went from a sleep provincial city where men were mostly respectful and boundary respecting to the insanity of a capital city. And I just couldn't deal with all the attention, got myself in some very stupid unpredictable situations, explored some boundaries which were perhaps better left unexplored and generally did not do my mental health and sense of self any good at all.

I'd never eaten a take away until I moved to London. A boyfriend who was averse to cooking and a lot of take aways later I noticed the problems stopped. All of them. And my boyfriend didn't seem to mind I was getting a little larger - he didn't have to feel inferior and paranoid every single time another man paid me any attention because it stopped. Yes, that's harsh, but yes, there's history and no, you don't need to know it.

I started to use weight as a defense mechanism. A way of becoming invisible. I loved being invisible. And I didn't know the damage I could potentially be doing to my body by being overweight because this was the late 90's, early 00's and I was severely in the minority in being overweight. Shops didn't stock sizes over 18. Seriously. None of them. There was Evans and that was it. So I shopped in Evans and parked my love of clothes because the difficulty of choosing what was safe to wear had been removed from me - now I only had to think about what fitted. Much simpler, no?

I have, essentially, worn a fat suit as a cloak of invisibility for somewhere around 15 years.

I don't have diabetes. No heart problems. No blood pressure problems. No cholesterol problems. Systemically I have problems, but they're genetic. X-rays on my knees reveal perfect knees for an approaching 40 year old. Yeah, sorry, I know I don't look it. I have no wrinkles. Whole other blog post. What I do have is hypermobility. And my weight doesn't help with the dislocations and so I've lost 8 inches around my bra line and 3 inches from my waist. And probably that's why I feel comfortable writing this down. Moral high ground. Perhaps.

I've had to use some serious visualisation to do that. Because every time I see new bones I haven't see for years I panic. Every time I feel my hip bone I panic. I don't know what else to call it. So I consciously talk myself through this - I'm a different person, the world is safer, I am in control of my world, I am not equipped to punch people in the face if they step over my boundaries after I've asked them not to. I am in control.

Food is about control. Ultimately. It's about emotion too. It fills the void of fear in your stomach. Anxiety lives in my tummy. Every time I talk about anxiety to my counsellor, where does my hand go? Straight to my tummy. Food comforts. Food prompts the release of adrenaline. Food hides. Food feeds.

For those of you for whom food is just fuel with the occasional treat, I appreciate this language is completely alien to you. But I'm afraid this is what food is for millions of us. It's a battle as well, it's evil, something that waits to trip you up, consumes you with lust and greed, then spits you out feeling sicker and more shameful than you could ever imagine feeling if you haven't felt it.

Once you let food take control, once it becomes about control even, you've lost. And some days it feels like I'll never win this battle. But mostly, now, I know what my relationship with food is. It's something to be managed. The same way my mental health is something to be managed. I must be conscious of it. I cannot be thoughtless. Not ever.

But what I want more than anything for you to understand, is that the food is tied to my mental health. I feel well at the moment. It's only been for the last week, maybe two. I'm not better. But I want you to understand that when you look at me, when you see my weight, you see a visual representation of something that for others manifests far more privately and less visibly. You are seeing my battle with the world. My logic makes complete sense to me. Made complete sense to me. It wasn't until I went to counselling and got called on that logic that I realised how flipping ludicrous it was. But my weight wasn't the reason I was in counselling. Being diagnosed with Aspergers was. And yet I found it so helpful, combined with seeing a nutritionist as part of the Healthy Lifestyles team I self referred to that I so totally don't understand why tackling obesity involves counelling as a default.

I get some people are fat cos lack of education. I get some are fat cos they just didn't pay enough attention. Or they were busy. Or they just suddenly stopped exercising and it piled on. But there is a sub set of us for whom our weight is a visible and physical manifestation of mental health issues. Or self esteem issues. And whilst I get that some of you have no empathy for 'issues' the simple fact is, you don't get to do that. You don't get to be dismissive, because this is a very real problem affecting a very real NHS, potentially taking resources away from treating your cancer. You don't get the luxury of not thinking about this any more. It's a problem, and looking away from it, or worse laughing at it, is just not solving the problem.

So. We really need to talk about obesity. Honestly. Openly. Freely and with no holds barred. I have no health problems as a direct result of my obesity. I've got a set of bollocks genetics which I can do nothing about which obesity exacerbates. So you know what, I'm gonna stand up. Yes with the help of a stick but this is me standing up. This is me saying, this is an issue and can we please please please sort this out now?

Otherwise, people are going to start dying in their thousands, not in their tens and we really will have a problem on our hands.