Things I Wheely Need

Every so often, I end up with a little thought knocking around in my head; tiny, but persistent. Everything I do, every move I make and every aid, adaptation or accommodation I have, it whispers

"you don't really need that, though, do you? you could manage without if you'd just try hard enough"

That. Thought. Is. Poison. Nothing else. Just the spite and bile and viciousness of all the bullies and bastards I've ever been gullible enough to listen to, echoing around my psyche.

Its most recent iteration has been "you don't need that big expensive power wheelchair". Every time I stagger to the back garden and lean on the fence while the dog eats dandelions (no, I don't know either). Every time I stand and reach for something at work, or I go out with my crutches because my wheelchair won't go in someone's car. Inside, I'm yelling at myself for wasting money on such an expensive piece of kit when I could manage without. Although, I blame a lot of it on a particular supervisor where I work. That's a story for another day, though.

I think the universe decided to teach me a lesson. Yesterday, while out walking the doggie-faced one, I went up a kerb, as I have thousands of times before. Only, this time, the cable connecting the controller to the chair was hanging loose, I don't know how or why, and it snagged under the back caster of my powerchair.

Unfortunately, I noticed this when the back caster frayed a hole in the cable and the chair stopped going. I tried all the obvious things - turn it off and on, move the joystick around, etc., and then I looked down at my wheels to see if I was caught on something and spotted the cable, and my heart just sank. I managed to get it from under the caster, by rocking the chair on its suspension. I ran my hand down it hoping fervently... and found a hole in the outer casing, displaying inner, insulated wire and frayed copper strands. As my brain went blank (apart from "huh, that explains it" and some serious cursing) guess what? It started to rain. Just fabulous.

I wasn't more than two minutes from home, but there's no way I could get my big beast of a chair back there alone. And Baxter, sat patiently next to the chair, was already starting to shiver (he'd turned 8 the day before). So, I phoned my parents for rescue - for the dog, not me! Once they were on their way, I donated my coat to the dog, who sat wearing it like a cape, and I phoned the breakdown assistance thingy that's included in my chair insurance from Fish.

I have to give them their due, they were fabulous. First things they checked were

• are you somewhere safe? not in the road, etc? (yes)
• do you need any medication or medical treatment imminently? (nope, got it with me)
• is it raining? (yes)
• do you have a rain canopy? (nope)

Then it was details of what had happened to the chair, a good description of where I was and where I needed to go, and a couple of minutes wait for a call back, where I was told they'd sent a motorcycle recovery firm who'd be there within the hour.

For the first time I've ever used something like this, it was remarkably easy and straightforward. My parents arrived in their car (which won't take my chair, sadly) and took the dog back to my house. My dad stayed with him, and my mom brought the car back so I could sit in there and wait, which was a good job because it was absolutely bouncing down by then. I gave up, threw my waterproof coat over the controller and frayed cable, and just watched the rest of my chair get soaked from the car.

Motorcycle recovery guy was very nice, ingenious and bloody strong as well, and a combination of those three and me dithering about kicking casters into alignment got the chair into the truck, up the road, second left, to the top (really, I was *that* close to home) and then out and up my ramp into the house. I did offer brews and biscuits, but he declined. Which, given how scatterbrained I was coming off is fair enough! I don't think I'd want sustenance prepared by someone who's just struggled to tell you her name, after asking you to repeat the question twice. Brainfog + sensory processing crap + autism + super sudden change of plans + compulsory telephone calls = a very stupid Jaime.

So, back to this whole universe-teaching-me-a-lesson thing. Well, I knew I couldn't get to work without my chair - the bus stop is *way* too far to walk, and the one at the work end of the journey is even further away from my library. And I couldn't have worked once I got there (there is one department that could loosely be considered a desk job, but they won't let me do it at all most of the time, let alone full-time til my chair's fixed).

So, Monday morning, I'm making more calls. To the insurers, Fish, in the hope my accidental damage cover will pay for repairs. To my wheelchair wizards at Mobility Choices, to see if they can quote me for repairs and order the parts. And to work to say "I can't come in, my wheelchair is broken".

As an aside, an interesting point arises out of that last one - what type of absence does it go down as on the system? It's not sick leave, I'm not sick. It's not dependent leave, my wheelchair is not my dependent (rather the opposite really!). It's not compassionate leave, no-one has died and while I do find it surprisingly upsetting to be wheelchair-less, it's not going to count! I suspect they'll try and call it sick leave, which will be an argument in the making as I think it'll put me over the first absence management policy trigger (i.e. we're not saying you aren't/weren't sick but you must take less sick leave!).

So, I have an extra two days off, maybe longer. There's no way it's going to be sorted by tomorrow so I need to find somewhere that can rent me a chair for a week. I'm still hoping they'll magically have all the parts and a spare slot this afternoon, but I know it ain't going to happen.

Normally, I'd be thinking "yay! time off!" and I was, to start with. Then I started thinking about what I'd do today.

I could go swimming! but I can't get to the pool without my chair, nor can I manage to move about inside the building if I get a taxi, added to which no taxi driver will want this job - it is literally less than a minute's trip.

I could return my library books to <local branch> and get some of this paperwork digitised and shredded! except I can't get to the library, which is right by the swimming pool. I also can't walk up either the stairs or the ramp to the entrance, and I can't stand at the photocopier to do my scan/email/shred routine. I can't sit at the photocopier either - no room for a seat and I couldn't see or reach. Not to mention getting a large pile of paper there when I can't even transport myself.

OK, this isn't working. I'll carry on tidying and de-junk-ing the bedrooms. Great plan, small snag - next thing that needs doing? Take a big box of stuff to the charity shop, and some old furniture to the tip (to go in the furniture reuse container, not to be destroyed/landfilled. I take my recycling seriously!). OK, I couldn't do the latter *with* the chair, but I could have done the former, which would have given me room to work around the extraneous furniture.

Er, there must be something I can do. I know, I'll bake! Except that we need eggs for that, and I can't go out to get them. Nearest shop? Less than a minute's walk for husband. Nearest supermarket? Less than ten minutes. Can I get to either? Can I hell.

I'll take the doggie for a walk. Um, except, I can barely stay on my feet to take him in the garden because my left ankle's still uber-trashed from that last bad fall, and I'm already so tired I'm using the stairlift if I have to go out, both to go down and come back up. Normally, I'd only use the stairlift for coming back up because it's slow and noisy and I can usually manage down the stairs, because I know I'll be getting into my wheelchair at the bottom and won't have to walk any more. 

[We live in a first floor flat with a stairlift, wetroom, one bedroom and one box room that's become our office/my workroom. It's not possible to get wheelchair accessible housing that's big enough for two people to live in while under 55, in my area. Everything suitable has a minimum age of 55, 60, or 65 and refuses to make exceptions for someone under that age regardless of need. It's disablism at its finest, but I can't manage to make them budge.]

So basically every useful or entertaining thing I thought about doing today? Anything that requires leaving the house? is basically out, because I don't have my powerchair to use.

So, next time I start tormenting myself with "you don't need that powerchair", I'm going to come back, re-read this, and tell my inner doubter to go forth and micturate.

So what's normal?

My life has changed drastically again since the last time I wrote here. I'm now employed, in a job I love, constantly exhausted, more financially secure than I have ever been before, still ever-increasingly physically impaired, and the rotting corpse of my mental illness, which I thought was safely dead and buried, is oozing and groaning and attempting to rise from the grave. (I'm with Harry Dresden on this one: there should be some kind of law against ever needing to kill anything more than once. It's just unnecessary).

So, what's on my mind right now to bring me back here? Oddness Versus Normality, or, Working Amongst The Normals.

The most basic, simple fact of this situation is that, bluntly, I am not normal. Physically or mentally. I am Different. I always have been, and it's become less and less easy to hide - to 'pass for human' as I call it in my own head - and less and less easy to want to hide, as I get older.

It's been suggested numerous times that I have Asperger Syndrome, and I tend to agree - I just never went through the formal diagnostic procedure because at the time it wouldn't have changed anything about my mental health care and I just didn't want another label to add to the string.

For those not familiar with it, Asperger Syndrome is an autistic spectrum condition, and is classed as a developmental disorder. People with autistic spectrum conditions - especially those who feel that they are simply different, not in any way deficient - often refer to themselves as neurodiverse, and to what I call the Normals as neurotypical. Asperger Syndrome is not a mental illness, not a learning difficulty/disability/difference, and it's not 'bad behaviour'. Asperger's is generally diagnosed when you're a kid - usually in your early school years when everyone is learning to be a social being, and it becomes apparent that you are, well, not. Autistic spectrum conditions all affect what are known as the 'triad of impairments', namely

• social imagination (playing 'Let's Pretend', seeing the situation through another's point of view, playing Devil's advocate and the like)
• social communication (interpreting subtexts and non-verbal communication, understanding metaphors, analogies and other non-literal language, deducing or inferring further information from context, understanding social boundaries and appropriateness, etc)
• social interaction (not understanding unspoken social rules, social contexts, difficulty making and keeping friends, trouble working out what other people know or are thinking or feeling)

 As you can probably imagine, the world is a confusing, unpredictable, illogical, overwhelming and frightening place if you have an ASD. People with Asperger's tend to be of or above normal intelligence, and don't generally have the global learning difficulties associated with low-functioning autism. They may well have specific learning difficulties like dyslexia or dyspraxia, and conditions like ADHD and epilepsy are more common. Sadly, because it's difficult to be an Aspie in a neurotypical world, depression and anxiety are often found in people with Asperger Syndrome as well.

Other things common in Asperger's are a love of routine, and what's often known as sensory integration issues. The routine thing is quite simple when you think about it - when all else seems to be totally random chaos and you can't seem to control or even predict what will happen to you, routine is a lifesaver. It's an anchor to cling to while the world tries to wash you away. Consistency is safe. If you deviate from the routine - the rules - there's no telling what might happen, but experience and cynicism say it's not going to be a wonderful surprise.

The sensory integration issues are a little more complex, and can be really hard to understand if you've never experienced it. Have you ever become so used to a sound that you only seem to 'hear' it once it stops? Once you've been dressed for a while, do you stop noticing the feel of the clothes on your skin? People with sensory issues can't do that - they can't control the 'volume' of their sensory inputs, the information coming into their brain about the world around them. They can't dismiss or filter out the 'constant' inputs as being irrelevant to the ongoing experience, and as a result, they get *all* that sensory information, at full volume, full detail, *all* the time. Can you imagine that? It's been described as stepping out into a carnival after spending a day in a sensory deprivation chamber. It's overwhelming, it's *too much*, and because you can't filter and prioritise it, it all seems threatening, it kicks your fight and flight response into high gear, or when it's even too much for you to do that, your brain just shuts off and goes away, leaving you blasted by a hurricane of sensation with no protective filters at all, no cover, no shelter.

Is it any wonder that in a loud, crowded, bright place, an Aspie can 'meltdown' and become hugely distressed? To me the surprising thing is that the Normies actually *like* that stuff, and can *ignore* most of it! Quite aside from when it reaches meltdown level, there are other effects of this. Sometimes when you're trying to filter, you manage it *too* well, and filter out everything - including the person behind you who's just yelled 'excuse me!' for the tenth time because you're in the doorway. Or the sound of the phone/doorbell. Or your boss asking you a question.

Speech is a nightmare for me. I can't distinguish the voice of the person I'm trying to listen to from all the background noise. Sometimes they're drowned out by the buzzing of the flourescent lights, or the fan on the computer. Sometimes they're booming away so loudly it physically hurts, but so is everything else and I can't untangle the noises. Phones seem to flatten sounds - I know they cut out highest and lowest frequency to save on transmission bandwidth - and that seems to smush all the sounds together even more, making it one single noise instead of many strands of sound. I detest phones. Whoever thought they'd be the best form of communication for *everything* you *must* do as an adult human being was as Normie as they come, I swear. Those things are evil. Add in speech that rapidly deteriorates under stress and anxiety verging on panic because of all the phone calls that have gone way south before, and I can't make out what you're saying, nor can I speak comprehensibly to you. It's a disaster.

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So, anyway, after that huge digression because I really want to keep pretending that nothing is happening at work, everything's fine, move along, nothing to see here folks, I'll get to the point.

I'm coming close to losing my job - the job I love, am very proud of, and which, until my supervisor and the manager who deals with Personnel stuff sprung a 'you're failing' meeting on me with no warning, I thought I was doing pretty well. Apparently, I'm extremely wrong about that.

I interrupt too much.

My social skills are... lacking (i.e. non-existent).

BigBoss and BiggerBoss have noticed me interrupting and they Do Not Approve.

Lack of BossApproval is a Serious Problem.

I don't pay enough attention to the Main Desk, when I'm working across the library. I don't come back to the desk if there is a Customer who is having to Wait, and WaitingCustomers is an even more Serious Problem than lack of BossApproval.

Let's look at *why* this might be happening.

Interruptions. Well, when I applied for this job, did the interview, and the induction training, and in every corporate policy thingamajig I've seen, much is made of team working, and inclusion, and encouraging everyone to contribute and making the most of the skills and abilities of each member of staff. 'Initiative' crops up frequently.

However, it appears that this is what is generally known as Bollocks. In actual fact, people at my level are supposed to shut up and know their place, switch their brains firmly 'off' for work, be sifficiently awed and worshipfully respectful of anyone with any seniority regardless of whether they know anything about my job or I've got reasons for doing things a bit differently to everyone else (i.e., because I *am* significantly different to everyone else, maybe?!). While I'm being a good, submissive little carbon copy, I'm supposed to make sure everyone knows how innovative and co-operative our organisation is, how we encourage communication and initiative and really make the most out of skills and abilities that staff have to contribute to the team.

Needless to say, poor old Aspie me is completely fucking confused by this. I only have this much information on what the hell is going on because my husband translated a lot of it from Normie to Aspie for me. I'm still not completely sure what I'm doing wrong or what I'm supposed to be doing instead, especially as my customer service skills are so poor my job is in danger but customers keep complimenting me. One guy followed me halfway across the building for an opportunity to say thanks for the help I'd given him. Doesn't sound like a fail to me, but what the hell do I know, clearly?!

Regarding the CustomerWaiting disasters, there's a few bits of info needed to make sense out of this. I'm a power wheelchair user, even though I can stand and walk a bit. If I'm not in the open area surrounding the main desk, I can't see over the shelving racks to judge how busy it is at the desk and if my help is needed. Apparently if you're standing, you'd have to be really quite short (like, less than five feet tall, which is well below average) not to be able to see at all, so my colleagues can see it far more easily than me.

Likewise, my colleagues can all vary their walking speed, jog or even run if they need to. I'm stuck with a maximum speed of under 4mph, and turning is massively slower than that. A lot of the time I hear the phone ring, get back into my chair (if I'm shelving on the bottom row, I sit on the floor. Leaning over from the chair to do it messes with my blood pressure when I sit back up and I dislike passing out, especially at work), start it again if it's gone into standy or I've switched it off, turn round, head for the desk at my <4mph top speed, and by the time I can see the desk across the building several of my colleagues are already there and I'm no longer required. I assumed the thing to do was to go back to whatever I'd been doing - obviously they haven't seen me approach, realise I'm not needed and turn around and go back, and have instead assumed that I've not moved from wherever I am.

I'm hoping against all hope that this is simply problems caused because I don't realise or conciously acknowledge the limitations placed on me by my disability, so I can't point them out to supervisors/managers, and I don't think they're noticing that I *am* trying to do these things but my limitations are more, er, limited than my colleagues.

I declared my EDS, fibro, dysautonomia, etc when I applied. I also listed my mental illness, but didn't really make a big thing about it given it was so stable at the time, and I thought it was actually, finally dead. I didn't mention my Asperger Syndrome, partly because I've never had an official 'paper' diagnosis, and partly because it carries even more stigma than the other two as daft as it may seem.

It's taken me two days to write this. I really want to keep my job. Going to work has turned from anticipation and glee to subdued dread, 'what am I going to screw up today?' already and after thinking I was doing well then being told I might lose my job, I don't feel like I can even trust my own judgement on anything work related. I just don't know what to do or think or say. And of course it plays into every bad experience I've ever had around not fitting in, not saying or doing the right thing, not making friends, not being able to grasp the rules, failing, all that stuff. Like I actually needed any more trauma in that particular area.

I just don't know any more.

Frustration

Oh, FFS.

Can't get an answer from PCT about whether I can have funding to see Prof G in London. Can't appeal decision cos they won't *make* a sodding decision. Hate bureacracy.

Can't get anyone at local Rheum service to listen to me at all - if you don't have inflammatory arthritis or an autoimmune condition, you're too boring to treat, apparently.

Can't get a referral to someone to see about getting ring splints/some better wrist splints. Apparently rheumy shld sort it but see above re: complete disinterest.

Why is it so hard to make medical 'professionals' understand that sometimes, things won't kill you but nonetheless cannot, under any circumstances, wait an undefined period of time from 'four months if you're lucky' to 'forever. many, many years'. like chronic pain treatment, splints, adaptations, equipment, specialist referrals... ugh.

Currently chafing at the fact that there is information, advice, management, even treatment out there - but I am not allowed to access it because somehow I'm less 'worthy' of the effort than if I had a popular disease - one with big-charity support, like cancer, for example. If I had suspected cancer, I'd have to been seen within two weeks. Get something that won't kill you, but will just make you live out the forty or fifty years left of your natural lifespan *wishing* it did, and you're not important at all.

This is really upsetting me. I can hardly bear to admit this to myself, but I would like to discuss and consider the possibility of having a child with my husband.

However, I can't even bear to say the words, because from what I've read about EDS - and the fact that a few of my symptoms/history factors may well point to at least some vascular involvement, instead of 'pure' hypermobility type - childbirth could range from 'needs close medical supervision' to 'suicide: the long route'. It could leave me too damaged to care for my child. It could kill them, or me, or both of us. I need to at least have some idea of the possibilities and the balance of probabilities. I need to talk to someone who knows a lot about this, who I can trust, and get good, solid, reliable information and advice - and who I can trust to care for us properly if I did try for a child.

This should be a wonderful possibility. I should be really gleefully excited. Instead, I'm too apprehensive to even think about it loudly. All because my local NHS doesn't think I'm worth it. Because of money.

They'll give free nicotine patches to people who have been able to afford 20 cigarettes a day for years. IVF. Replace faulty breast implants that people could afford thousands to have fitted to begin with. Interpreters for people who've never bothered to learn the language, because someone else pays the translator. There are probably countless more examples that I'm too tired and angry and sick at heart to think of.

But there isn't any money for me to have even some chance at minimal quality of life for the next fifty years, let alone dream of having a child.

Spending time with my Dad, and pain vs fatigue

I love my Dad to bits. He and I fought like hell when I was a teenager - the usual story of him wanting me to stay his little girl and me wanting to be acknowledged as an adult, plus a side of him being hugely stressed out and me going crazy.


These days, I feel like I've got my Dad back. We went Christmas shopping for Mom today - had good fun and a laugh, then came back to mine, and put the world to rights - usual mix of politics, philosophy and general bitching about idiocy.

I love the fact that my Dad (and my Mom, for that matter) are people whose company I enjoy and who I like to spend time with, as well as being related.

Again, I'm reflecting on the fact of just how incredibly lucky I really am. I love my family, and they love me. When I was in the psych ward and fully believed they'd be absolutely justified in abandoning me, they were there every step of the way. No panic, no 'why are you doing this to me?' - just 'when can we come and see you and what do you want us to bring for you?'. Amazing. Lots of people believe their family love them and would support them no matter what - I have had the amazing privilege of seeing my family prove it to me. I *know* that it's true.

Today has been an odd one. Lots more pain than usual, but a fair bit less fatigue, as well. This actually works out a better deal for me - I actually have some semi-effective pain medication now, so I can always kill some of the pain with drugs when ignoring it and bullying through it has reached its limits. On the other hand, I have absolutely no effective techniques for managing fatigue. Zero, zip, zilch, nada, niet, nothing. Sleeping doesn't help. Resting doesn't help, pacing doesn't help, there's no medication I can take for it - if I run out of spoons, or wake up with them in short supply, then there's nothing I can do about it whatsoever. I just have to give up on whatever plans I had and use my precious spoons for things like breathing and eating.

So, yeah, give me pain any day. Although, I have to admit, both waking up with the majority of my fingers dislocating, and my persistently subluxated shoulder, are getting on my nerves. I think it may be Oramorph o'clock again...!

Oh, and this month's supply of lactulose solution has turned up in a bottle that makes it look like floor cleaner, much to my amusement!!