Failure To Launch

Another title would be Arrested Development. Also, this is the second attempt to write this and I just lost 600 words *glares at Blogger*.

If you live with any long term condition, you expend a disproportionate amount of additional energy trying to keep up. Whether it's planning and management of normal, daily activities (like commuting and work), reflecting on how other people react to you or whatever, the average person like me (or other different people) probably spends around four hours plus using up additional mental energy managing situations or even reminding themselves of normal social behaviour that "normal" people just don't use. It is exhausting. I'll shout out here too to my friends who are exhausted living and trying to manage their conditions and are lucky if they can manage normal activities, like dressing. I have periods like this from time to time and it is a shitty, shitty state of being, let me tell you.

Do you have to consider access situations, availability of toilets when considering going out to the pub, cinema or theatre? The train? Whether or not it will be loud and bright or the numbers of people there? Do you spend hours trying to calm yourself down because someone has discriminated against you, made some unfeeling comments or you know you did something off and are beating yourself up about it? No? Then you're not using up additional energy. 

What is probably worse about this whole thing, is that many of us are frustrated. For people on the autistic spectrum, only about 15% of us are in full time employment. If you are lucky, you're somewhere with an understanding employer and robust HR. I know from friends' stories that this sometimes isn't the case. Most people in employment with a long term condition will speak to you about the constant extended effort to keep up - or to go above and beyond - to "prove" you, the disabled person, belong somewhere. I live with a constant worry over my sick leave. Using additional energy means that you experience more stress (and I suffer extreme stress already). This has a knock on effect on emotional health and your immune system. As I have a couple of conditions that I can wake up with having something go click in a bad way, I perpetually worry about if I will be OK tomorrow. Occupational Health and I discussed a year ago if I should drop down to 30 hours a week on these grounds, but most employers aren't really keen on that. Plus one is dealing with misconceptions and discrimination all the time. It is.... frustrating.

I do also feel a sense of frustrated potential. I am not a stupid person, however I have had to recognise that I have limits. I am trying to put my foot down and stop myself from over-extending myself. That is very frustrating. During my twenties and thirties, at the time I was studying for my two degrees, I had my mental health take a nose-dive. On top of this, I had some long term physical complaints kick off as well. Throw in some particularly stressful family events for good measure. I passed both my degrees. Possibly, I could have done better. Frankly, I'm amazed I managed to pass at all sometimes. The rest of the time, I feel like I was psychologically, emotionally and continually treading water, in perpetual motion, all the time. All of which, you guessed it, uses up energy. Life, for me, feels like an uphill battle all the time. Work and all that goes with it, is exhausting. Trying to deal with my ongoing health issues takes up a lot of energy. I have rediscovered my fire with politics, which is good. But I am also constantly angry about the uphill battles we different people face every single day from the second we open our eyes. Bear in mind a lot of us are also challenging misconceptions every day too. Guess what? Tiring.

I saw a video recently, that likens the autistic daily experience to putting in everything you got into the performance of a lifetime. Every day. I think that's probably a good analogy for us, as well as other with difference. 

Careerwise, there's lots I would have liked to do. I would like to have become a journalist and I still hold out hope of being a writer, dyslexia and everything else be damned. There are other things I would like to have considered too. However a lot of this requires a CV that has exceptional volunteer and community experience, as well as a top-notch degree. I just didn't have the energy beyond keeping my head above water. And that is how it was and how it is. I have come to terms with that. I probably would have done some things differently and I do try not to dwell on a lot of this too much. Academically, a late diagnosis of dyslexia also didn't help (with an English degree).

That is what I mean by Failure to Launch: the missed opportunities, the chances missed, the having to turn things down because otherwise I'll spread myself too thin and have to deal with the consequences.  Learning to accept that has been a challenge in itself. 

However, I also remind myself that I am capable of picking myself up in difficult times and starting over. That, despite everything, every day, I am still here and that, in itself, is an achievement. I own my own home, I have a career of sorts. I say I'm winning. 

On Faith and Paranoia

Yes, two posts in one day!

Those of you who know me in real life know that my approach to converting to a particular religion is turning into more of a forty-years-roaming-the-wilderness as opposed to something that is recognisably structured and to the point.

Some of this has to do with my moving to a different city for six years and not getting on with the teacher and the rest is a complicated mix of health issues, rota clashes and an unhealthy dose of self-doubt and whether or not I'm a fake, desperate for persecution in some way, or undeserving. I'm trying to be kind to myself on this.

I have been trying to convert to Liberal Judaism for some years. Alongside this, I have been trying to learn Hebrew. The additional studies also include an understanding of Judaism, history of the people and some of the additional complexity, for example the Israel context.

Let me set something straight for people: I am a Zionist, in the sense that I believe in the ethos and context behind the need for the Jewish people to have a country in which they can determine their own future. I also believe in the right of Israel to exist.

What I will now elucidate for you are a few other points:

I do not believe that Israel should be only for Jews.
I take all religious writings from a socio-anthropomorphic viewpoint (I.e I see the stories as explanations of how the world came to be, rather than G-d-given)
I also take the view that religions can and should evolve with the times.
I believe that everyone living between the river and the sea are entitled to full citizenship, recognition, human and civil rights. The end.
I believe in calling out everyone who commits atrocities or imposes restrictions on civilians, regardless of which side they are on
I believe that you need to read widely on various viewpoints, because in the middle is the actual truth. I also know that everyone sees things differently. And believe we should listen to each other

Anyway, that's that. I'm now off the subject of Israel for the rest of this post.

Nothing brings home to you the fact that you have lost white privilege more than the first time you experience prfoiling, aka loss of your privilege. I experienced this when I was told, via a friend, that I was "Worse than [the] Jews, because I wanted to be one". This came from someone who had just converted to Islam. Do I take this as representative of Islam and Muslims in general? No I don't. I have good friends of all faiths and no faith. Then there was the time that when standing withy community and waiting to go on a march, we were approached by the SWP and handed leaflets relating to Israel (sorry), which we politely declined. The diatribe we were treated to was appalling. Why had we been approached? The sign we had clearly indicated we were a liberal jewish community.

Then there was the time I had death threats on Twitter, which I treated with the derision they deserved. I saw it as a right of passage.

But things piss me off. People who call me a genocidal, baby-killer. People who say Jews should have to swear allegiance to their country of citizenship. People, like on a Vice video, calling for the genocide of Jews. Or the charmers who stood across from a synagogue in Charlottesville on Saturday and intimidated the congregation to the point they evacuated, taking their Torah scrolls with them. The people who think Jews overplay the Holocaust and shouldn't be included, because we make it all about us. People who think we shouldn't commemorate Holocaust Memorial Day and have the nerve to insist there is onlya focus on Jewish dead of WW2. People who shut you out or shout you down because you don't agree, 100%, with them.

When you see police on the door of your High Holy Day services, or armed police outside synagogues aboard, or advised not to put up a mezuzah it is hard not to be cross. And sometimes, scared too. Hard not to be when someone rides their bike hard at you on the pavement and yells "Jew" at you when they see you wearing a Magen Dovid. I do feel a sense of paranoia every time I hear of another anti-Semitic incident, especially in the U.K.

 Yet people persist in insisting that anti-Zionism doesn't equate anti-Semitism. To those people I would suggest that they need to learn more about Zionism. Which, as a political movement, has more than one interpretation. Also that if you equate most of a country's population of Jews as "Zionist" without asking them if they think just that, then you're profiling, which is, ipso facto, anti-Semitism. SORRY.

My faith is my faith. I'm still learning about it. But I don't understand the hate. I'll call out assholes for being just that too.

By the way, I learned this year that members of my extended family (not blood relations) died in the Holocaust. And, but by grace of G-d, some of my beloved family members would not be here now if they hadn't made a different decision. That is a tough thing to take on board. And upsetting.

As in all things, learn more. Ask questions, but please avoid assumptions. Please.

The View From

There are frequent moments in my life where I realise I have missed the meaning or instruction somewhere. I need people to be explicit about what it is they want me to do. Otherwise, I miss the hidden meaning. I realised that this morning after a conversation relating to ongoing employment-related shenanigans. This particular person, by the way, gets me more than others, but less than some. Clearly, I missed the instruction on how to do something - because it wasn't there. Despite my self-awareness, I also missed something else in the words. Thanks, dyslexia.

However, in reading a letter I got the other day and after this conversation and in reviewing people's reactions, I am also left with a realisation that people often see what they want to see, not an actual reality. It is this that allows them to make certain assumptions about reactions (like my melt-downs and tantrums when I hit "that" point), or when, for the millionth time, I'm pulled up over my tics. Because I don't look like Rain Man, or rock continually, etc, I'm expected to be "normal" and when I'm not, a lack of understanding means that no matter how many times I explain it, they default to their own assessment of something. So my meltdowns become my being unable to cope. Et cetera, et cetera.

I know, by the way, that a lot of people who also have hidden disabilities struggle with the same attitude of people who have this fixed view in mind: we get it when we sit in those seats on the bus, or dare to have a blue badge and no wheelchair.

God forbid you DO explain something as being something slightly outwith my control: Then you get the "try harder", "leave it at the door" and, mostly, no apology. For the most part, I donunderstand that I can be frustrating at times and when I am a bit stressed, that's when my "normal" face (I've spent a long time watching other people and learning to mimic behaviour I don't actually understand. I play a lot of "roles" in life, otherwise I wouldn't leave the house) falls away. Oh, I also get the whole thing about "shouting" about my "label": In my defence, I wouldn't have to spend continual time explaining that I do this because I'm Neuro-Diverse and on the spectrum if people would accept, listen and maybe try to understand where I am coming from. I wouldn't have to keep bloody repeating myself. I suspect it is an area of lack of knowledge and education and that some people *do* understand if they try a bit, although others sometimes lack the capacity to "get it". Then there are others who cling to their view and misconceptions. Repeatedly. Like the one who kept telling me that "dyslexics can't count", despite my testimony and that of fellow dyslexic professionals that we can.

Today's reflection has been brought to you by my not getting the hidden meaning that I was supposed to do something in a specific form (possibly because it wasn't hinted at). If I'm not clear a further action is required from me, I'm probably not going to do anything.

I'm still wondering what I should do regarding my career: half of me wonders if I should go ahead and apply for another job in a field, despite not getting interview for two others. Tricky.

Have a good day, folks.

Round, Round

It is Monday and I didn't get the email from the lottery yesterday, saying I had won a large sum of money.

I have just got home, following diversions, from one of those meetings that leaves people like me frustrated beyond belief. It was a work thing, relating to my being absent from my position. I am currently on an enforced leave, because people think I am stressed out. After today's meeting and some of the things that were said, it is absurdly clear to me that this is more to do with how I am and what are referred to as "reasonable adjustments" than anything else, as well as what I refer to as Other People's Perceptions (or OPP).

I work in a very reactive and busy environment. Consistent and frequent changes to priorities have been identified as something that need to be avoided in my case. This isn't to day I cannot manage with changes in priority, it's more that what can be controlled (such as working environment, schedule etc) should be, because this will help me cope with times when things change rapidly and I need to be involved. People with autistic spectrum conditions (ASC) tend to operate on different frequencies to the 99% of the Neuro typical (NT) world: We don't respond to various stimuli the ways  that everyone else does. Things like work commuting, talking to people on the phone, noise, being touched - these are some things that we may not like and add a level of stress to our day that not people do not have to contend with. And we may have to interact socially, on complex levels (oh god, the horror). On top of this, those of us who can expend a disproportionate amount of energy playing normal. By that, I mean that we are able to "pass", behaviour-wise, like the 99%, tending to minimise our "tells" or tics really quite well. Most of us have them, from not making eye contact, to rocking, to flapping hands. I have an extra spectacular one: the second I feel any kind of strong emotion, like frustration, sadness, fear, I cry. Literally, the tears come out. Where I work, I cannot shut a door if I have a funny five minutes, but I am allowed to leave my desk if I need to. I also have a tendency to interrupt people, can be abrupt and also quite rude. It is not something I have a huge amount of control over. It's a response to either sensory or emotional overload. Another issue I have, like many fellow ASC peeps, is that I don't recognise stress very well (frog:water), the reasons for which are also complex.

Quite rightly, this is something that is kept confidential, meaning it is up to me whether or not I want to reveal it or not. In my experience, that is a double-edged sword, best left to another post. However what I will say, in brief, is that you often get sick of explaining why you are the way you are for the nth time to the same bloody person.

One of the things that came up today, was that "other people" feel uncomfortable when I am in an overload situation. Personally, I want to be left alone. What I don't want is to end up being called into an office or worse, sent home, because it's felt I'm not coping. Yes, that has happened. Unfortunately, when you have no ability to shut a door, people will see you. Another thing that came up is that people feel I am not "approachable". Partly, this is due to my using noise cancelling headphones to tune out the worst of the bloody racket I have to deal with and also because I tend to look like thunder at the best of times: my facial expressions aren't something I'm normally tuned into. Apparently people think I'm about to yell at them.

I have left this meeting, having spoken to the person who was there supporting me, having listened to people criticising the fact I have my tics and that my use of headphones (aka a reasonable adjustment that others in other areas use FYI) might not be possible, because. What does someone like me hear? "We cannot cope with you on a bad day and we have a problem with your self management method of reducing some of your triggers". That's what I hear. Apparently, as well, because other people are unaware of the impact conditions like mine have on people, they just see someone who is using their headphones, when they aren't allowed to. Who has a different schedule, but they aren't allowed to. I also mentioned before that I have explained this to people before.... yet they often still ask why you do something, why you can't learn not to. (On that note, FYI, I am neither a neurologist or expert in ASCs. I don't f***ing know. I DO know that there are some things I cannot change. Deal with it).

I have a lot going on with my health. I am having treatment that I hope will make me better at dealing with stress generally. Unfortunately, I'm not going to be "normal" - I am going to continue expending a lot of energy masking the worst of my tics, because that is what I have always done and it works. Until it doesn't.

I do need support though: sometimes, when people are asking me to help them out and do things, I need help prioritising things. I lack Executive Functioning: if everyone tells me something is urgent and needed ten minutes ago, I can't figure out where to start. If I do not understand how to do something, then I need to be given a proper explanation and possibly training. What I don't need is someone telling me that I need to figure it out by myself. Yes, that's happened.

I have had long chats with people about whether or not continuing in my current job (note: a lot of this has come around because I'm on the verge of being made permanent, because my work identified a need for someone to do what I do) is the right thing. I am giving benefit of the doubt to the other side and an opportity to them to see if they can make adjustments. Right now, I'm not convinced they will.

But right now I am pissed off and frustrated, because it always comes back to the same stuff. Everything is always great until it isn't and this is a common thing with people like me who are high functioning: we tend to pass, we tend to cope, until we don't and then people don't know what to do with us.

As for my initial sentence about the lottery: I said this, because if I do win it, a decent sum, then I won't have to worry about money e.g. Work, and then I don't have to deal with the world. Aka a bunch of ignorant [insert rude word of choice here] who don't get it.

That Was The Week That Was...

It has been an interesting sort of week.

Adventures in baking: the sourdough starter appeared to have developed sentience and tried to take over the kitchen. It's now called Fred. I've also gone back on my reduced-carb diet, which meant trying out cloud bread for the first time. Which isn't bad, only I dislike the texture issue with my teeth, which I suspect is down to the high amount of cream of tartar in it. I think I'll try it again with about half the amount. The dinner recipe was ok (baked in the oven; counts, ok?), but I think I'll stick with my normal prep method for it. I have two bread recipes I want to enjoy, both involving courgettes: one is a soda bread the other a regular bread. Probably not for a wee while tho.

Other news is that I've gone back on the e-cigarette, reduced the booze to 0.5-1 pints per week and cut out the wine altogether. It had to happen; I just don't think my body is processing most alcohol well at all anymore, judging from the effect it has on me. Oh, and to add insult to injury, I also went back on my diet. This, for those of you who aren't aware, is a low carb diet. My current mood: Pissed off and I'll probably cut you for that slice of bread you're eating. You have been warned.

My EDS also has been having a laugh: I've had a bit of an issue with my left wrist for a couple of weeks, but managed to strain it on Monday, when, much to the absolute horror of the two neighbours I had run into, my ankle crumpled underneath me and I went down...WHILE CROSSING THE ROAD. I've still got a bit of a sore foot, which means I have slightly torn the ligaments in my left foot again, but the wrist got another unplanned wrench, so it's been off and on with the brace. Feeling left out, my right knee has joined the party, in that I woke up Wednesday with a partial pseudo lock. The ligament has either swollen or got caught around the patella area. It's certainly clicking away like mad and knee movement has been a bit painful. Forty eight hours of a brace later, having avoided crutches and the dreaded stick and it seems to have settled down. None of this is particularly painful, just annoying. The knee wasn't related to Monday at all: it happened because it happens. For no reason. Often in the middle of the night. Note: "locked knees" require surgical intervention; pseudo locks do not, but are almost as painful (it will wake you up) and only eases when you bend it, which can be tricky.

I have been seeing a few new people and scaring them, which should come as no surprise and I've recruited another body for a quiz I'm planning for later in the year. I've got a couple of emails to send off about a possible pub night for local peeps too, which should be fun. And it's tourist season hell locally; time to add around 30 minutes to any bus journey after 9.00am, avoid historic sites and the international festivals kick off this week too. Oh, and Big Work Meeting on Monday, after which I will hopefully be back to work in a slightly more accommodating environment.

Happy weekend!

Drink Me? (A Catalogue of disasters, part 3)

Finally, before I get distracted again, onto Allergies, Skin Hypersensitivity and Asperger's.

I have random allergies, because apparently nuts etc aren't good enough for me. I have the usual ones related to asthma: dust, feathers, pollen, but I am also lactose and wheat intolerant and (drum roll please) coconuts and tomatoes.

People don't believe the last two. They do, when they see me covered top to toe in a rash, swollen up and wheezing (raw tomatoes - it's an enzyme thing) or puking my guts up (coconuts). Coconuts seem to be a lesser deal than the tomatoes, but I'm not risking it. Nope, no sirree. The tomato allergy is familial, as in two close members also have the issue and since I mentioned it a pile of friends have mentioned it too. Notably, the other members of the family also have a strawberry allergy, to which my GP said "NO, THESE ARE NOW BANNED TOO!". My reaction to raw tomatoes is worsening and I tend to avoid them, if at all possible. No ketchup and minimum cooked tomatoes too :(. I'm ok, so long as I don't eat them. So I don't, where possible. And I'm pedantic about it in restaurants. The main problem with tomatoes, is they are on the cross allergy list with kiwis, strawberries, bananas and... latex. So, minimal latex for me too. 

Skin hypersensitivity is a bit of a weird one. In 2012, I decided to use up some small samples of stuff because I was moving and packed my main skincare. For some reason, my skin reacted and I developed roseaca overnight. When I went back to my old stuff, my skin still reacted. Trying to find effective skincare is a pain in the arse, let alone anti-ageing. There are, however, a couple of brands I can use. Huzzah. Unfortunately, not long after the face went mental, my skin decided it was not happy with parabens, SLES and preservatives, so I had to start using products without them in it (read: more expensive) and eighteen months ago, the scalp followed suit. I have to take my own haircare products to the hairdresser, my scalp is that sensitive, otherwise I'll be scratching like a dog with fleas (also, with the tomato allergy. Not ladylike AT ALL). I'll put it like this: when YOUR skin is reacting after a gentle facial and your sister with extreme ezcema is NOT, that's bizarre. I also have to watch exactly what I drink, otherwise, yup, you guessed it, face reacts. Meh.

Asperger's is something a tad different. I've been aware for a decade that I was probably on the spectrum, as are members of my close family, although none of us were diagnosed (we pre-computer generation were forced to do such things as Go Outside and Socialise With Friends). Prior to that, I had a horrendous time at high school, more recently at work, due to my quirks not being understood. Some of the depression is endogenous (as in, no known cause, just because), however the research shows I am not alone, particularly in the late diagnosed, mainly due to lack of understanding and discrimination from our peers. I am different to other people. I do not dislike being different to other people and, in fact, I'm not bad around them. I don't care for loud, bright, noisy environments with a lot of people, sure but I am perfectly capable of empathy (more so than non Aspies IMHO). Unfortunately, we tend to be a bit naive and are therefore vulnerable in some respects. We also tend not to react particularly well to change, but if you give us clear guidelines and boundaries, as well as not drop things on us last minute, we tend to do really quite well. Yes, we can become fixated on things (I am called the Costumeer for a reason) and develop lots of knowledge on them (ah, my James Bond day...) and people prefer not to get me onto certain subjects (because I won't shut up) and I'm not good at reading people sometimes (I lack social awareness) and sometimes I need a lot of help figuring things out (it's an executive functioning thing). Plus, I have to contend with dyslexia as well. Double whammy. However, I'll tell you something: the spectrum is more of a circle than a line and encompasses so many different aspects. I'll tell you something else: if you must go with something to fixate on, I'm more Sheldon Cooper than Rain Man. I also find it really frustrating when people tell me that "I don't look autistic" (what should I look like?) or that "Everyone's on the spectrum somewhere". Both of these statements really infuriate me. Why? Because they don't respect me as an individual expression of my condition or my experience and struggle with living with NTs (that's the Neuro Typical. We are NDs or Neuro Diverse). I also get fed up of being asked why I don't get something or why I can't be like everyone else - I am not a bloody neurologist and I am still figuring out how to cope with this.

So that is me. There might well be another post today. Excuse the errors!

On being in the system.

Apologies for part three of the saga not forthcoming. During the intermission, I bring you my thoughts on today.

Some of you reading will know that I lost both my parents to cancer some years ago. What most of you won't know is that I was referred to the Genetics Service by my GP, finally, because of familial history cancer history. Essentially, you go and meet with a nurse who charts your family history and then does what research she can. In my case, it was pretty clear that I have a high risk of cancer number one (from Dad's side), but I was not expecting to be called back in relating to cancer number 2 (Mum's side).

With Dad, no genetic testing was ever done. When Granny died (AKAIC Patient Zero), they didn't know bowel cancer carried a family risk. When my uncle was diagnosed and treated, this was in Ireland and Dad - well Dad knew he was at high risk, but either wasn't recalled or (more likely) refused to go back to the GP, despite knowing he had polyps (indicating an increased risk). Dad also didn't consent to any of the genetic screenings when I initially raised this. That said, normally one primary relative OR two secondary relatives gets you at least a review. In our case, a letter has gone to my GP stating I'm to be put into the bowel cancer screening system very early and get early referral if I have changes before that. I get Full Monty screening too. Yes, you can ask. No, you probably don't want to know and yes, I've already had two screenings done.

After being called back in, the Genetics service told me they'd decided to review the risk of #2 (Ovarian) and plotted my risk factors for both Breast and Ovarian. Breast cancer came back with a population average and ovarian did not. I should probably explain at this point that unlike Angelina Jolie, there's no evidence of BRCA1 or 2 in my family or any of the more recently identified different genes known to be implicated in its development. Research is ongoing.  Anyhoo, off goes my case to Gynae for review and I received a letter informing me that I do, in fact, have a moderate risk of developing Ovarian Cancer. Prophylactic surgery is recommended, so today I popped along to see my  consultant for a chat about options. Yes, at 42 and childless, I was facing having both my ovaries whipped out and instantaneous menopause (I'm crazy enough, thanks). I think he was relieved that a) I'm a nurse and b) am clearly well informed about such matters and we had a good discussion. In the end, we decided that the way forward is for me to go "into the system". What this means, in practice, is that until such time we decide that I am going to have the operation (this will be in around 8 years time, or sooner if anything shows up) or not, I will have annual ultrasound and Ca-125 blood tests and a yearly review.  Ultrasound will show up physical changes potentially and the Ca-125 is a hormone secreted by tumours and generally the gold marker to indicate if something suspicious is going on. I am now "in the system". I am now being monitored.

I was, in actual reality, really anxious about meeting my consultant: I have been thinking about whether or not I want children or not (plus the early menopause thing) and if today was an "all or nothing" kind of a deal. I'm really glad it isn't. And I'm kind of pleased that child-bearing is still an option for the time being. And that I'm being monitored. Yes, I'm at higher risk, but I am in the system and being monitored.

I think there is a small comfort in that.