The book, although filled with very solid basics, did not impress me with its selection of words. Yes, naming animals are important, but “bird”, “dog”, “elephant” and “cat” are not words I use every day. Of course I then downloaded an iPad app which had a few more words. Suddenly finding myself paying attention to the words I do use, I was surprised by which words are heard in my house the most.

There’s the regular expected ones that I could find in the book, “food”, “drink”, “milk”, “nappy”, “bath”, “cat”, “fish” (so yes, I guess animals do make a lot of sense to have in a first words book), “bed”, “book”, “drive”, “please”, “thank you”, “bye bye”, “mommy”, “daddy”, “ball”, “car”.

Then there were the regular once I expected to find (some I found on the iPad app, but most I’m still sourcing from youtube): “hello”, “wait”, “all done”, “be patient”, “shhhhh”, “walk”, “calm down”, “toys”, “medicine”, “push chair”, “coat”, “up”.

And then there are the words that I didn’t realise we used multiple times a day: “twit tv”, “podcast”, “ipad”, “netbook”, “computer”, “zombie”, “controller”, “console”, “game”, “murloc”, “inhaler”, “online”, “skype”, “webcam”, “amazon”, “Bob”.

Do the words we use define us? In a lot of ways, yes they do. It’s hard work having a kid, harder work having a kid with health issues that doesn’t sleep and then I go and make it even harder by insisting that on top of the usual baby routine, we also have a clued in tech oriented baby that uses sign language. I suspect we will start on the alphabet and spelling soon, or knowing my house, we’ll make up our own signs for the words we love that doesn’t exist.

It’s been a week of milestones, first signs being used (food, drink, hello, bye-bye, shhhh, no and yes), first tooth, first steps (we’re up to three yay), first play on the swings and slide in the park, vocabulary crossed the dozen words benchmark and has finally moved past just the naming process to include words like “up” and “waiting”; well “aiting” at least. Will we be able to keep up with the signs? I really hope so, it’s one of the coolest things I’ve ever tried to do.

On Sunday there was an exhibition of World War II military vehicles at a local garden centre. We pointed out things to Aeryn, trying to keep it simple. That’s a truck, that’s a motorbike, that’s a side-car, isn’t it pretty. I asked Chris if he knew why we both find it so enjoyable to wander through and look and discuss; his response was that it’s the pragmatic and beautifully functional design that pulls us in. It was a whole mini-reenactment, rather than just a vehicle display it turns out, and walking past the dancing hall and refreshment tables and older amusement park rides, we didn’t quite feel like we were fitting in any more.

A lady at the table across from us rather disapprovingly commented that not everybody is taking the event series and people who aren’t dressed up shouldn’t be allowed access and look, there are even people here in jogging clothes, with children, how awful. I guess in our jeans and gaming hoodies the reference were to the three of us. I didn’t mind; I understand where she is coming from. I think its rather unrealistic to expect people who visit a garden centre on a Sunday morning to even be aware of the event, never mind dress for it, but still, part of me wished that I could’ve made the experience better for her. It was obviously a day she had looked forward too and all these people with their modern clothes and smart phones were ruining it.

It did make me think about expectations and how much the view of our world shape the course of our lives. I’ve always believed that happiness isn’t elusive, it’s finding contentment in the moment, whatever the moment happened to be. It’s not something you chase after or something that finds you, it’s just living your life to the best of your ability and hoping major disasters either don’t struck or come in manageable time frames and proportions. I plan to raise a little girl that has an open mind and a positive attitude to life in general and that’s not always an easy task.

It was a beautiful summer’s morning, I had a nice cup of coffee and Buttons said Boo! at anyone walking past her high chair in the restaurant. Chris went to fetch coffee’s and cake and although he made the worst possible selection (apple and date and I’m not particularly fond of dried fruit), it just didn’t matter. Our lives have always been extraordinarily stressful with huge uncertainties and frequent risks scattered through the days, getting older though, I’ve come to realise that its all very well and good to find your pleasure in the little things, but when even the little things go wrong, it can throw you off balance.

I used to need things to be just perfect, one blip and the moment was ruined; but now, I, who have never been a picture person look through the gallery of my phone, pictures I’ve taken over the last year. The first picture of my pregnancy showing, the last picture of being pregnant, my friends, my family, my old cat, my new cat and really, the type of cake just doesn’t seem to matter to me any more. All that matter is time; always make time to stop and really look at the people in your life, that’s what really matters. I may not have time to write much these days, but no matter how busy we get, we block off family time, always, without exception; that’s the rule. The big secret of happiness, always make time for the things you love.

It can all be very depressing and overwhelming. The care situation is a black hole that sucks the life out of everyone in a two mile radius; it just never ends; evaluations, assessments, reassessments; stalling, more evaluations, paperwork, paperwork and a request for more paperwork. If the government handed me a tenth of the money that’s been  spent on trying to assess what assistance I’m entitled to, I’d have been able to buy state of the art equipment and contract an agency to provide flexible as-needed support getting on to two years ago now. Thinking about it, I probably could’ve bought a house with the money wasted on administration, assessments, reviews and the mountain of time wasted by inefficiency, redundancy proven by the fact that its taken months of assessments to determine that I’m not entitled to an adapted cup; I should be able to manage just fine with a particular style of standard cup, just the one type mind, and as its not adapted but of a standard design, it’s not an allowable expense. I have no quibble with buying my own cup, its the fact that the process of determining whether I should get one or not cost more than probably a life time supply of cups erks me.

Ninety percent of time is spent on determining what impact my condition has on my ability to function and what support that amounts to. For care, the same review process, as its multiple assessments carried out by various professionals, have determined that I need anything from no care to 24-hour all year round. I’ve been called resistant to treatment, one report suggested that I need a psych assessment, one suggested my pain relief should be ibuprofen only (the fact that I have a sensitivity to Ibuprofen due to brittle asthma didn’t seem to make it across despite this being pointed out on more than one occassion) whilst on the other spectrum Etonox at home was suggested. I want neither. I want my standard pain relief that I’ve always had that works well for me. I don’t want 24-hour care, but also can’t cope without support with a husband with a chronic health condition and an 8-month old bendy baby at home.

I’m very fortunate to have a solid medical team, I know that most people with chronic conditions, especially the rare ones, struggle getting even that sorted out. My consultant promised to call whoever needs calling and setting straight, explaining that I need some support, that I have a legitimate genetic condition with legitimate, real symptoms and limitations and that finding the middle ground would be very helpful. I’ve made a formal complaint about a particularly damaging and eroneous report and the equipment mess that just drags on forever, which has been acknowledged and handed over to someone that’s on holiday until the second week in August. Frustrating, but understandable.

Dealing with a serious medical condition is hard enough. Trying to get yourself to the highest level of functioning possible is hard work and really stressful. Being judged, assessed and constantly evaluated and when something within a variable condition varies, (I saw her walk, really I did and get up off the floor unassisted, she must be fine, it’s all in her head) accused of having faked disability, isn’t helping. My condition provides enough challenges and setbacks without the addition of a permanent ball and chain.

Buttons subluxed her shoulder a few days ago. As a result, picking up her cup to drink her milk is uncomfortable. We watched her yesterday, encouraged her through tears streaming down her face to pick it up anyway and she did, for a little while. She held it for a few sips, then her arm got tired and she needed a little help with the weight, but she still held on to it and directed and then it got worse and she let go. If she didn’t get any help, she would have been able to have a sixth of the fluid intake that she should have and as a result, other things would have started to go wrong; dehydration being the obvious one. If we just held the cup for her, she would never be able to hold her own cup and drink independently. How much she can do varies based on her shoulder; some days she can’t hold the cup at all and other days she can drink from start to finish independently. Parts of it is psychological; she needs lots of encouragement to always push to that level of pain where it hurts but I can put up with it; learn not shut it down and ignore the pain entirely as that leads to damage, learn not to stop when it hurts as her abilities will just slowly decrease over time unless she works hard at maintaining and expanding her stamina. That’s life with EDS; some days you can’t do it, some days you can and the vast majority of time you fall within the 10-90% range.

Providing the right level of support is impossible to predict and I often get it wrong; it’s difficult to tell where your limits are when they are constantly shifting and its even harder to keep your emotions out of it. Sometimes I push too hard, do too much and cause a significant setback; other times I get comfortable and complacent and stop moving as fast as I potentially could go on that road to “better”. When multiple people that don’t know you, know very little about your condition and that refuse to take the fact that you have a family into account also decide to try and weigh in on where your level of functioning should be, not on a day to day basis but on a the day I’m here is the view I’m taking; life gets very stressful. It’s a pity that so much time and money is going into trying to do just that; more money, much more taxpayers money has been spent on determining what I should get than spent on providing any type of support and that imbalance will just increase I suspect as my complaint finally makes it onto somebody’s desk.

I’m tired of getting undressed in front of people, tired of being told what I should and should not be able to do, theoretically of course, tired of everything taking month, of all the negativity, the frustration, the lack of any empathy or support and being treated like I’m the bad guy, I’m the instigator and trouble maker because of my refusal to have be single and elderly and have a common condition that is listed on their tick box systems.

Today, I bought my own mug. It is not of the appropriate design. I guess that makes me a rebel. I can think of a lot worse labels that could be and would be thrown at me when the peanut gallery learns I opted for a mug that I thought appropriate due to its size and design. At minimum, I would at least like to reserve the option to try it out and see if its okay on my wrists, because its the one out of dozens that stood out and said buy me, I’m red and snazzy, yet small, comforting and affordable with free next day delivery. Buy me. So I did. Because I can. And now there’s only one left in stock, so if you want a red and snazzy and dependable espresso mug (not that I drink espresso, just regular coffee in small doses), quick, grab it now.

If you’re reading this months from today, more in stock soon, so hopefully, it’s still there for the envious. Some like their red Dorothy shoes, others, me hopefully, their fire engine red espresso mug, but I think the gist of it is similar. There comes a time when you have to be stubborn and willfull and put your foot down. Some times its saying I’ll give it a go even though it hurts because its good for me in the long run, other times it’s saying, no, that’s too far beyond me, I’ll pass and other times it’s just saying you can try and make me fit into tick boxes system after system, but at the end of the day, I’m a real person, with a real life, a real family and if you can’t understand or accept that, well, label me whatever or however you like, it won’t make me any less of who I am. I’m done getting caught up, done trying to be as cooperative and nice and accommodating as I can be. I’m now going to live my life and I’ll accept, hopefully graciously whatever appropriate help is available and if that makes me difficult, well, I guess I’m just difficult on top of “complex”. The negativity has got to stop somewhere and here and now is as good a place as any.

I got stuck pretty quickly. New controller, new game, rusty hands and even on easy, it was hard getting to the fun part. It started of great and then when the shooting and climbing started , I fell below the curve and started dying. A lot. It was frustrating and I rage quit and went out for a drive in the very wet and cool Wiltshire countryside. “Gaming should be fun”, Chris said. I was reminded of when I first got my Xbox and played ODST coop with Rem two years ago. That’s the lesson he taught me that really stuck. Gaming should be fun and if its not, either fix it or walk away. I decided to fix it. Getting back, I picked up the controller and started dying. Every time I fell because I missed a jump, I heard and exaggerated ahhhhhhhhh from the lounge followed by a chuckle. Chris was supplying the sound effects much to the amusement of our daughter. It made me laugh. I didn’t mind dying so much any more. Soon I stopped dying and started succeeding. Every time I got stuck, moments that grew further apart, I asked for advice. Sometimes Chris had helpful suggestions, sometimes I came up with the solution afterwardss myself, but getting stuck wasn’t that frustrating anymore. Suddenly, gaming started to be fun again. It made me feel all hardcore and exhilirated.

I’ve always bee a little scared of the term “gamer”. I’m in that inbetween category, not hardcore enough to be a hardcore gamer, but too involved to be a casual gamer. I don’t have the twitch factor and drive to be hardcore but I enjoy the wrong games too much and know the names of too many developers to be casual. I don’t need to subscribe to any particular subset, but its difficult not to. I take everything pretty seriously, even my hobbies are meticulously crafted and time for them are earned and neatly set aside. Passion is important to me. I keep having to remind myself to stop thinking and just relax and have a hobby.

I played for a while today. Buttons sat on my lap and then fell asleep, I paused to catch up on some reading and then went back to it. It was fun. It’s been a while since gaming was unadulterated fun. I’ve been playing a lot of puzzle and strategy games and although I adore those, there’s no excitement, no pressure, no physical challenge. I forget how much fun gaming can be; now whenever I think Uncharted, I hear Chris’ exaggerated ahhhhhhhhh in my head and can’t help smiling. The fun in gaming isn’t really the game. It’s the friends we make, the people we play with, the stuff we do whilst we play. It’s why co-op games are my first choice always, to run around in a world where I don’t have to worry about dislocating joints or fatigue or how on earth will I get back or what if something goes wrong, that’s a privilege I treasure.

In reality, so often by the time I’m done getting ready for the party I’m too exhausted to enjoy it or even make it out the door. Gaming, I can show up in my pyjamas with uncombed hair and curl up in a comfy chair for the duration. I don’t miss out. It’s the only place I can always go where the possibilities feel endless. I’ve neglected having hobbies far too long. Responsibilities are important, but sometimes it is important to do something just because you enjoy it. Life isn’t really that hard or complicated as long as you keep moving forward whilst taking time to stop and appreciate the view.

It made me think about raising a little girl. Everyone seems to have the idea that I’m anti-pink and anti-frill and anti-girly. I’m not. It’s not my personal preference, I was always a tomboy who preferred motorbikes, fishing and action TV shows, but I don’t plan on telling my daughter at any point who she should be. I was adamant about having a neutral coloured nursery, partly because we couldn’t sex her properly and there was a 20% chance that she’d turn out to be a boy and partly because I wanted her surroundings to be neutral. I took both a blue and pink blanket to the hospital and 7 months later, she still sleeps under either the blue or the pink blanket. She has a white hoodie with pink butterflies on it, but green and blue trousers to go with it.

Her toy chest has a good selection across the board and I plan to always keep it that way. I dislike gender stereotyping and I’m relieved to live where I live as I’ve not come across that many adults who succumb to it much. In my house, every one does everything except for Mommy who does what she can. I don’t usually talk about equality, I’m generally of the opinion that making a fuss of something makes an issue out of a non-issue. Reminded of Morgan Freeman’s interview, short excerpt here, that the best way to get rid of racism is to stop talking about it. Still, I think about it some times. I notice toys being marketed according to gender, clothes being sold according to gender and I wonder if Buttons growing up will either feel that she should like pink and purple because its deemed appropriate; that she should start shopping solely in the girls section or something else along those lines.  I have faith in the middle ground. We shop in all isles, be buy all sorts of toys and there’s nothing wrong with the colour pink or blue or puke green. It’s just colours. I hope she’ll learn and always remember that.

I remember from my psychology lecture more than a decade ago, the three p’s. In humans, the difference between those who become despondent and those who do not is one of belief and attitude. Learned helplessness stems from a pessimistic attitude, people who believe that bad things will happen tend to interpret everything in the worst light and so, bad things happen. They also hold a set belief that things are pervasive, personal and permanent. I might be a tad pessimistic, but the three p’s seem foreign to me. I rarely take anything personally, I’m not religious, I don’t believe anything happens for a reason, I  think reality is a tangle of chance and coincidence of which you make the best or the worst, depending on your attitude, skills and whim.

Pervasive I understand; EDS is pervasive, parenting is pervasive, but bad luck, I don’t buy it. It might sometimes feel like stressful events are a continuous drizzle that permeates and soaks through every piece of clothing and creeps in underneath your skin, but it’s not, not really. That’s just an illusion. Things are only as pervasive as you allow them to be. Shift your attention to something else and its not impossible to take a break from problems. Breaks are important, sometimes you can’t escape huge issues when awake, but then there’s always sleep; naps. I’m a great fan of gaming, reading, drives (now that walking is no longer much of an option) through the countryside, going something nice and/or familiar to have a cup of coffee and a conversation about anything but your problems. These days escape is easier, I just look for Buttons and her smile, I walk into a room and see her scramble to get to me for a cuddle and that’s enough; someone who itches to hug me and looks at me as if I’m the whole universe, nothing that doesn’t knock a whole through. As for the permanent,  nothing but change is permanent.

I look at myself and wonder if I’m crazy trying to teach a 7-month old about the three p’s. When her joints give way and she screams, I soothe and say, this too shall pass, I sing to her and say, it’s not your fault, it’s nobody’s fault, it’s just cause, I tell her stories I make up and I hope that says, there’s a big wide world out there, much much bigger than any of your troubles, now or ever, never loose sight of it. I loose sight of it some time. My life is sliced into smaller and smaller pieces, most revolving around appointments, red tape, carers, state funding and then symptoms, management, medication, therapy and then tiredness, fatigue, restless sleep, so much wasted time. I do it all, the important, the unimportant, the juggling act.

I make sure to steal time for a me, time for people, time for Buttons; moments of nothingness that’s the flavour of life. In the back of my head, I also keep thinking, there’s more to life than this. As happy as I am being a mom, I do not want to spend the rest of my life dealing with government bureaucracy whilst claiming benefits for my troubles. I want more. I want to accomplish… something, something  I can look back on twenty years from now and think, this is what I did, by myself, for myself, just for me. My days added up and painted a picture; even if time will erase it like high tide wipe out sand castles, that’s fine, as long as I know that once upon a time, there was something there, something I made. I think I may be in need of a job, well no, maybe, an occupation. Or at least a hobby.

I value my privacy. The more help you need, the less privacy you have. People wander in and out whilst you’re getting dressed, breastfeeding, having a seizure, asthma attack, putting joints back in and its not something I have been able to get comfortable with. As a result, I still rely heavily on my husband for the very private stuff; the stuff where I need to be calm as stress aggravates it; the stuff that requires any removal of clothing items, the stuff that make me cry and scream in agony, the stuff that leave me confused and unable to communicate very well. If he’s available, I’ll take it. I trust him with my meds, my joints, my health, my safety. It takes time for me to trust other people. My current carer has been here six months and I’ve only recently started leaving the house with her and not Chris, edgy but knowing she could deal with the stuff that goes wrong if they go wrong and that Chris is at the other end of the phone to provide instructions.

EDS for me is not about the day to day stuff; I can manage quite well in my own home that’s adapted and set up to suit my needs. I can’t manage when either things go wrong – astma attacks that stop breathing, seizures, blood pressure drops that cause fainting and falls which in turn result in nasty dislocations, eye lenses dislocate, hearing goes completely or I need to visit unfamliar, unadapted places. The visibility of my conditions doesn’t just depend on how visible symptoms are, it also depends on how visible support is. I don’t always use the wheelchair, I don’t always need physical assistance to get up, I don’t always need help relocating joints. I still need help, I can’t walk by myself, I shouldn’t get up unless someone’s hovering nearby as I often face plant forward and falls are particularly bad with EDS and even when I’m doing my joints, I sometimes get halfway and then screw something up and need help, or in the process of putting one joint in dislocate another and then can’t get either back or I just can’t do it and so need to be able to say help, can’t fix this one.

I can have a very visible condition – braces, splints, wheelchairs, crutches, sticks, funny walk, seizures, going blue when I can’t breathe, being unconcious is pretty spectacular in public – but I don’t want the looks, the stares, the attention. I want to go my way just like everybody else. As such, I camouflage. I find somewhere private before the spectacular happens and even better, I keep my life within set limits to avoid incidents. As support goes, I prefer the minimum and invisible; I prefer equipment over a pair of hands and I prefer keeping it discreet.

Living with EDS is a little bit like trying to loose weight and sticking to a set calorie limit for every day. You can eat a small piece of chocolate and skip lunch once a in a while, but not every day. It’s a continuous balancing act. If you add one thing here, you need to take it away there. My life has been chopped into pieces by the system and its almost easier to comply than it is to object; but not quite. Having the right to say I’ll accept help from a care team for the simple stuff, the every day stuff, the cooking, cleaning, driving, moving things (and little people), carrying things, handing me things, getting my shoes and coat on and off, but not for the intimate stuff unless I have to, unless Chris really isn’t available, is a choice I should be allowed to make.

Choosing to keep my health issues private is a decision that I want supported. I choose to wear loose clothing, I choose to find a private spot to relocate joints when possible, I choose to get home and into my bedroom as much as possible if I’m at risk of a seizure or severe asthma attack. For practical reasons, yes, I eliminate triggers easily in one room, not so much in public, but also for emotional ones. I detest an audience. Discretion is a two-edged sword though. The less visible my disability, the more judgemental attitudes tend to be. I used to be a lot less sympathetic on this issue with the attitude that if you want people to accept your handicaps, you can’t hide or disguise them and expect people to still notice. Dealing with people a lot more has made me realise that people may find it difficult to grasp the concept of invisible disabilities, but its not impossible. It’s not up to me to make them sit up and notice; its not up to me to justify the help I need and/or receive. It’s up to me to create a life that I’m comfortable in and to ask for the help I need, not just put up with the help I’m entitled to. Invisible disabilities are tricky to live with, but its not impossible to bring the point across that they’re there, it’s just difficult and easily forgotten about. As for support, having a family makes the help I receive more invisible too. You don’t notice grandma pushing the push chair so Daddy can keep Mommy’s hips in place as much as you notice Daddy pushing the push chair and Mommy with her carer. You don’t notice the dozen times a night Chris puts my joints back in, but you’d notice it if I had to summon a carer from the lounge to do it.

It’s every day when I brush my teeth with Chris. He puts toothpaste on my brush and his, open the tap, I stick mine under, so does he, I brush my teeth, he brushes his, I spit, he spits, he rinses both toothbrushes, pops my wrist back in, open and closes taps and we’re done. With a carer, they do exactly the same thing, but in the inbetween bits, they stand and watch and for every part, I give instructions; can you open the tap, can you put toothpaste on my toothbrush, can you rinse my toothbrush, close the tap, put my wrist back. Here, -move fingers- put your hand there, now push here like this, then turn, like this, ow, no, not that way, ow, no not like that, pressure here, move your hand a bit lower, now, push, ow, no to the left, now push harder, now push and turn, yes, like that, okay, good try, let try it again all together, push and turn and ow, yes, like that just a bit more pressure, so again, back to the beginning, now push harder and turn and… we either get to finally, yes that’s it, or that hurts too much, don’t worry about it, I’ll sort it out in a minute… Chris!

I’m lucky; I get to keep my disability quite invisible for the most part. I can do all the things, well, get by with tricks and discretion (order fish not meat, mash or chips not roast potatoes, small drinks, bottled water, squishy deserts), at a price, of course. I recover from a lunch out the way other people recover from a marathon run done with a chest infection and sprained ankle. In private,  afterwards, I put myself back together again. It makes a lot of things harder, but, it leaves me with at least a sense of normality. My health is not my  life, it tries to be, but it isn’t and it shouldn’t be. The easiest way to let it take over is by letting it be everywhere, allowing it to be a topic of conversation rather than a short, polite, rote introduction. When I’m asked how are you? I say, fine, thank you. It doesn’t mean I’m fine, it means that I have so many health appointments and such an extensive care team where the topic of conversation is always my health; when I do something else, anything else, I’d like it to be about something else, anything else, but how I am doing today.

The highchair arrived before the baby did. It was a gift and I didn’t realize when we decided to put it in storage, it was one of those things I saw as needing months and months into the future, that time would fly by so quickly. We pulled it out a month ago when Button’s paediatrician said she’s ready for real food, but couldn’t use it. She slumped, couldn’t hold her weight up and her shoulders went quickly. I figured we’d need a special chair with support for her about three weeks after she was born and put a request in for a referral to an OT to get one, but six months later and that referral hasn’t happened yet. So the health visitor recommended we feed Buttons on my lap where  I can support her shoulders.

I watched her play yesterday. She’s sitting upright without issues, her shoulders crunch when she pulls up on furniture or hands, when she turns over in bed, when she puts weight through them. Sitting up seems to be okay. So we fetched the high chair from storage again and this time had much better luck. She’s comfortable and happy and enjoying food that much more.

It’s easy to fixate on the help needed, the things one can’t do is there, every day, reminding you of the obstacles that you try to overcome more often than not. It’s easier to loose sight of the obvious. Some times, you don’t need help or expensive equipment, time changes things and sometimes for something to work, all you need is time to change things. And not to forget to cover the same ground again at regular intervals just in case solutions have decided to jump out of the woodwork and present themselves with a flare.

It made me realise that despite all the hassle and headaches and fuss, this is not an unhappy place. I complain, a lot, more than my fair share, but I also laugh, a lot and I think so does everyone else here. We’re not conventional; for a start, the carers still don’t know what to make of Rem who growls out of the speakers and tells me off for moving in ways I shouldn’t and swearing when we play co-op. I don’t connect with people easily or often, but when I do, I hold on tightly. It bothered me at first, the sudden need for me to explain my life, or not, it just made me uncomfortable in my own home. Until we were shopping for American credit cards, Chris sprawled over the bottom of the bed stealing one ear bud by yanking it out and me yanking it back saying I want to hear too and watching the bemused carer present trying to puzzle out what we’re doing. I couldn’t help thinking, if she thinks hanging out on Skype is weird, imagine what she would’ve made of us when we were raiding in WoW four nights a week.

My friends are gamers; as such I’m used to the awe of “wow, a girl gamer, awesome” that surrounds women in the world of gaming, however little or much you dabble. I’m finding it odd now that I’m colliding with the average world out there more with many different people coming and going here (not just carers), that gaming is still frowned upon to a very large extent. It’s not cool, it’s not enviable, it’s not really socially acceptable. I see visions of Grand Theft Auto flashes across faces when someone takes in my tiny game shelf and single console and I’m learning to accept the repressed slightly disapproving looks when I choose to spend the couple of hours a day I don’t have Aeryn gaming or watching adult themed TV. (No accounting for taste it seems when shows like Breaking Bad, Castle, Game of Thrones, Dexter count in your favourites; which reminds me, still haven’t watched the walking dead due to the horrified audience).

Chris is his own universe of oddness and Buttons doesn’t even need to try. I watched her yesterday clambering out of her cot. She’s tiny, even for her age, and yet the second she was put in, she grabbed the railing, pulled herself up to standing, eyed the side that was taller than she is and launched herself forwards anyway, hooking left leg over the edge and hoping momentum will carry her to freedom. She’s six and a half months old, I don’t think she’s suppose to be doing cot acrobatics just yet, but there she was, so pleased with herself. A for effort, Buttons, most definitely. Jade, the cat with the cat version of cerebral palsy is the quirkiest pet I’ve ever come across. She’s just weird beyond expectation. It’s not just that she walks funny and climbs with her front legs rather than jumps, it’s a personality thing. She’s just odd. Delightfully odd.

I have a weird condition, live in a “unique” situation and most of the time, I don’t notice or care. It doesn’t matter to me. I don’t care what people think of me as long as they keep it to themselves. Well, not really, like everybody else, of course I want everyone to like me, but I understand intellectually that even well liked people aren’t always liked and I wouldn’t exactly call myself well-liked as a general rule, I’m too stubborn and bitchy for that. I laughed so hard today my eyes were tearing up and in that moment I realised that despite everything, I’m pretty happy. Supergirl snores in her sleep and chews hickies on my arm and I call her zombie baby and threaten to cover her mouth in ketchup and put it on youtube the next time she does it.

It’s so easy to get frustrated and I catch myself tense and annoyed whenever I stop to think. It’s doing bad things to my pain levels and less than ideal things to relationships close to heart and although I understand grumpy, I’m around people with chronic pain issues that have trouble sleeping a lot and tired and in pain never comes without a fair share of grumpy, I don’t like me when I loose my cool. Coming to terms with being disabled is a very big deal, it rearrange your universe; coming to terms with having a child with the same condition you have that will potentially need a wheelchair before she’s 30, that’s even more difficult, knowing first hand how much harder life is when you’re different and tired and in pain all the time. It makes you grow up twice as fast as all your friends. Dealing with the hassle and issues that stem from disability, is by far the hardest. Once you get your head wrapped around needing care and special stuff, you can begin to incorporate it in your view of the world and your identity; it can be come normal and every day; but the constant shifting goal posts surrounding help; the rigid government structures that tries to squeeze everything in standard size identical black boxes, makes life a challenge.

I wish I had a road map for living with a disability; what its suppose to be like, how help is suppose to happen; I used to think it was easy. Go through everything you do, take out the stuff you can do, see what equipment you can get to enable you to do more stuff from the can’t do list and for everything that’s left over, hopefully get a carer to help you do those and as a last resort, do it for you. Turns out its not that easy; care agencies arrive long before equipment, only some things are authorised to be on the I-need-help-with-this-list and everything is split down into so many bits that my life feels shredded and disjointed. This isn’t anybody’s fault, it’s just a result of lack of coherence and communication within a vast system. People don’t talk to each other. I see it every day now. Information is missed, lost, skewed, forgotten. Things aren’t always written down, the things that are written down aren’t always read and verbal exchanges are hit and miss both between people, someone is invariably left out of the loop, and events, something is invariably miscommunicated.

I’m a big fan of writing and reading. In this world of instant electronic communication, I find it so hard why everyone cannot be connected. Everyone dealing with my case have an email address; don’t tell me its that hard to setup a case file that pools all your emails for a particular patient/client/service user. People are so scared of red tape, so scared of getting too caught up in paperwork; as if paperwork is a horrible thing by nature. It’s not. Having to write a report that includes two quotes as well as a justification for why each peace of equipment is vital and can’t be done without, now that’s a waste of time and money. We’re wasting more money paying an OT’s government salary who then spends her day writing account sheets than we do on the actual equipment supplied, I bet. Do it for the big stuff fine, if you’re authorising £5000 for a chair or a few thousand for a bed,fine, but the same report of a £2 toothpaste squeezer or £3 spoon? Really?

Paperwork is not the enemy. If all my case workers were cc’ed into all my reports, we’d save so much time and money. I wouldn’t need two or three of a lot of things. The same OT that is now potentially coming out three times; first in her capacity as CHC representative to assess what health related equipment I need, then in her capacity as representative of adult care for the local council, to assess what assistance I need on a social care scale and then in her capacity as children’s council OT to assess what children’s equipment Buttons needs. Each of these three visits takes months to arrange, we’re six months into waiting for the second and third and no date has been set yet. Each had to go through a different department for referral, each require its own qualifiers, but practically speaking, it looks like its going to be the same OT visiting me three times, each time to do a slightly differently fragmented assessment. If only paperwork circulated, she could’ve come round once, written up her report, divided within her report which items fall within which category, so i.e. who pays for what, and be done with it. But no, everything runs in isolation “for privacy and confidentiality reasons of course”. Right…

I’m ranting, again, frustrated, again, tired and annoyed that there are so many gaps that we fall through and friends and family and left to pick up the pieces. I’m not bitter though; I’m not angry either; I think if I didn’t have a family I would be, so many disabled people are, lucky me, I have more to my life than just getting by, getting dressed, getting food, getting up, going for a quick leisure trip, getting back. Not that I do much more, but I have beer in the fridge, Rem who lives in the webcam to amuse Buttons, or so she’s rapidly growing to believe, Chris that wanders through the house at night in my pink pyjama bottoms (long story that), a funny cat and a daughter that’s delightfully quirky. Thanks to the lovely singing talents of carer number one, I now also have songs like horsy, horsy and wind the bobbin up stuck in my head, an experience I desperately strived to avoid. The things that tuck at my heart strings and the corners of my mouth. Time to focus on the glass half full.