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.

And Down The Rabbit Hole (Part 2)

Today we shall be covering Arthritis and Chronic Pain Syndrome. Allergies, Skin Hypersensitivity and Asperger's will now come later and believe me, no one regrets more that I chose to do this, as each one of these bloody things deserves a post of its own.

ARTHRITIS AND CHRONIC PAIN SYNDROME

You may recall that last time I mentioned hypermobility. I explained that some of my joints are more flexible than others, meaning I'm able to put myself into near pretzel like positions, joints allowing. For example, I may be able to bend backwards to 90 degrees, but a malformation of my hip socket and femoral avulsion means I cannot do the splits. I know, I've tried. Also, I have the FEAR, meaning I never have been able to hurl myself across a floor mat doing all sorts of weird and wonderful moves. Or on ice, but that accident is another story.

Most people develop osteoarthritis as they start to get older in life, due to the use and pressure on the joints. Aside from Juvenile and Rheumatoid arthritis, which are separate conditions, those of use with hypermobility start to develop arthritis far earlier than that. If you experience injuries, the onset can be faster. My first experience of arthritic symptoms in my knees was aged 18, at a political conference. This, you understand, was on top of the various knee and ligament injuries I had been experiencing since I was 11. At 18, I was told all high impact sports were out. Permanently, if I did not want to see significant deterioration in my knee joints. Goodbye ladies' rugby. Still, that, plus late orthotics, knee braces for the gym and my knees have been Ok since, although they do have a tendency to pseudo lock. Normally when I'm asleep. Excruciating.

My back has been a bother since I was 12 and fell off a swing, landing badly on my coccyx. I was also told around this time that my body is "short" by about 2 inches, due to a mild scoliosis. Despite this, I was extremely flexible, however I was apparently slipping discs in my neck from quite early on. As a result, I have slipped discs and three MRIs have shown that I have facet arthropathy, AKA spinal arthritis. The spaces for the nerves are being compromised by growing bone cells, which is what happens in arthritic conditions. It's mostly stable, but means I can have a lot of pain. I'm expecting my shoulder, wrists and ankles to develop symptoms at some point and I'm pretty sure at least my right hip, thanks to a bad fall in a bike accident, may display symptoms worse than the current pain. Leading into this is Chronic Pain: the exact causes of it are not known, but people with connective tissue disorders, like me, or those who experience awful accidents and their pain relief isn't well managed go on to develop the condition, in short: we experience pain in parts of the body where there is no reason for it. Most pain relief isn't that effective, because there's no cause. It's a response by the nervous system. I've had a lot of discussions with orthopaedic surgeons, specialist nurses and so on and I'm fairly convinced that one of the reasons the condition is so prevalent in propel like me is because of the way our bodies operate: we do normal things or accidentally push it too far, sustain injury and because the mechanism of correctly behaving ligaments etc don't function, the body decides a preventative pain function works better, except that this is not funny. You don't get warning flashes of pain: nope. You get this 24 hours a day, seven days a week, don't sleep because of positional discomfort meaning you need to move every hour or so and the painkillers you need to simply dampen down the responses are so strong you end up on more meds to control the side effects. What I have is separate from Fibromyalgia and Polymyalgia, which are also pain conditions, however they are all absolutely b*stards to live with. Mine is mostly stable, but my hip and knee have been playing up. After a bout of depression and stress, I had a flare of CPS. I am now prescribed extremely strong painkillers for use BD, except I react oddly to them in that I can't sleep. So once a day for me. If it flares up, it's not just sore: because it affects the nervous system, I can experience muscle weakness, loss of or altered sensation, pain if I walk too far and my balance can go off. I now have a portable stick and my own crutches. Sometimes I need them. Because if I didn't have them, I'd fall over. No joke.

Need a tea break? As this went on a bit longer, I have decided to stop here for the day. It's too depressing for words.