A 'No' Day

Today is a 'no' day. A day where I'm not obliged to do anything I don't want to. A precious day off.

Hi. I'm Jaime. I am an artist and maker, reader, writer, bibliophile and library assistant. I'm also a wheelchair user, severely, chronically ill and disabled - it's a long list but the basics are Ehlers Danlos syndrome, gastroparesis, autism, and severe mental illness. My middle name should probably be 'stubborn', I used to be a classic overachiever until I was ambushed by my own brain and body, and I'm having a 'no' day.

Yesterday afternoon was spent at the hospital I go to for my gastro stuff, having a colonoscopy. For those of you fortunate enough to be unaware of what this entails, I spent the day before  yesterday drinking industrial quantities of very strong laxitives which resembled liquid plastic lightly flavoured with toilet cleaner. Oh, and telling myself firmly I was not, under any circumstances, going to throw up. Because then they'd make me do it again. I choked most of it down, then retreated to the bathroom and sent my husband to visit his parents. It was not pretty and I really, really didn't want an audience.

So, yesterday, I got up at six o'clock in the morning (did you know there was a six o'clock in the morning?!) and choked down more of that ... stuff. Then I was sedated not nearly as heavily as I'd hoped and had a camera shoved into somewhere not meant to accommodate videography equipment, and made to roll back and forward to make it go round the bends, only to be told I'd not drunk enough liquid plastic/toilet cleaner combo and would have to do it again in six weeks. Very, very unimpressed Jaime.

After taking the cannula out of my elbow myself, in the complete absence of staff in the recovery room, demanding my clothes and my husband when someone appeared, and effecting my escape, said husband wanted to go shopping for a new coat. I didn't, if I'm honest, but the poor bloke put up with two solid days of me complaining about it and hours sitting in a waiting room, so I kind of felt obliged.

Needless to say, I was absolutely shattered when I got home. And, for that matter, when I woke up again this morning. Hence today being a 'no' day. I'm still wearing my pyjamas and dressing gown at five past seven in the evening, I've alternated between my bed and the couch all day and left taking the dog out to my husband (about which I do feel somewhat guilty as he's basically my dog).

It took me a long time - like, a really long time, decades - to be all right with letting myself have a day off. In fact, it's still hard and there's still a little voice in the back of my mind screaming frantically that I'm wasting time, don't I know I'm not doing anything useful?!

But that's just it - I have to keep telling myself this, but I am doing something useful. I'm resting, I'm healing and recovering, pacing and doing my best to manage my health, or lack thereof. And I am worth the time it takes to do that. I'm reading Doctor Who books and snuggling with my doggie and telling my husband he's awesome. These are worthwhile things. So today, just for a while, it's a 'no' day.

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.