Tales of Wisdom; Operation Extraction!

So I've been fairly quiet recently in terms of blogs, social media and general non-work activities.

It all started in October when I came down with the flu. Not a really bad cold but the genuine I can't get my legs to move for 5 days, even breathing hurts, flu.

Having had the flu twice before in my life (once was the awful swine flu version) I know how long affects can linger and still cause issues. So I was expecting the dull aches and joint pain and excessive tiredness to roll on for a few weeks at least which is why it took me so long to realise that the pain from my left side jaw was abnormal. I could tell that my gums had receeded slightly during the flu and thought that it was just a hangover pain from that, an ache in the bones from sensitivities and the flu.

It took me about a month to work out that actually, that teeny nub of a wisdom tooth had started moving again and it was essentially teething pain! A trip to the dentist at the start of December revealed that the tooth was trying to erupt but was so impacted it was on it's side, pushing into the next molar as its back point was erupting through the gum.

Ah great

This meant surgery to remove the tooth

Oh

Okay

The thing is I've had a pretty healthy life so far, made it to 30 without ever having had any big medical procedures like surgery. Sure I'd had MRIs done for medical research and the odd xray and ECG but nothing major, nothing that would involve General Anaesthetic. And this would.

I could have tried the local route but given how little of the tooth was through the gum it was going to be a fair bit more traumatic for my body than when I had two baby teeth cracked out at 13! (No adult teeth grew for my 5s, we thought this would make future wisdom teeth less of a problem!)

I was also acutely aware of how difficult I find regular dentist appointments and how utterly pushed to the edge of my coping ability I was by a molar filling a few years ago. No, going fully under was the best way for this to happen!

So, having decided on the best way forward I was then stymied by the eternal curse of the UK - the NHS waiting lists!

My dentist was unable to do the procedure so had referred me to a specialist surgery just before Christmas, and they in turn referred me on to Lister hospital - at the time of referral at the start of January Lister were advertising a 15 week waiting period.

I figuratively gritted my teeth at this (literally doing so was far too painful!) and simply began to carefully manage my pain relief routine (which now include codiene three times a day) and carry on with work as normal.

On my own I probably would still be waiting for Lister to get in touch about a consultant appointment ahead of the surgery bit luckily for me I have a very caring, very interfering family!

I'd spent a few days with my Grandparents while my mum and stepdad were on holiday and my Grandad had seen the pain I was in, even with the religiously followed pain relief schedule, and decided enough was enough. Cue a few days later a conversation with my brother where he admitted that they'd been talking together behind my back about arranging for me to go private for the procedure!

Now, I'm a complete JAM 30-something thanks to rent rates and exorbitant train fares so there was no way I could ever afford private care, I could barely afford the price quoted just for the initial consultation! Luckily my brother is a complete softy when it comes to me and he pulled off a modern-day miracle by convincing my Grandad that it was his own idea to offer me the help I needed!

As it turned out the £2k price tag was a bit more than my state-pension grandfather could afford but my mum was willing to add a contribution to the pot so all I had to cover was the £150 pre-surgery consultation fee which my dad ended up giving me after the surgery! I did still have to cover the mounting costs of pain relief however - there were definitely days my resolve to not get them on prescription was severely tested, especially the day I worked out I'd spent over £60 on them!

Once we'd decided to go ahead with the private option it was all really quick. (It didn't feel like it at the time as I was still struggling into work everyday on huge amount of pain relief and a limited diet!)

I called for an appointment Thursday 25th, was given Monday 29th for the consult and had the surgery less than 2 weeks later on Friday 9th!

The one thing I did find distressing with it all moving so fast though was the lack of time to process what I knew and what I still needed to know - I was calling the hospital from work the day before the surgery to check what I was supposed to do about taking my pain relief the next morning as I was nil by mouth from midnight!

The hospital was not far from my flat but I would be going home with my mum afterwards as they wouldn't release me to go home alone post GA - fine by me, I wanted home comfort TLC anyway!

I was due at the admissions by 11am so had to plan my night before and morning carefully; last big meal at 10.30pm so when I went NBM at midnight my stomach had enough in it to last! I set alarms for 5.45am so I took all my usual medication plus pain relief with the last glass of water I was allowed before going back to sleep to "waste" the hours before I was due to leave - pretty sure my anxiety wouldn't have fared well against trying to do anything else that morning!

Arriving at the hospital was odd, I had loads of stuff in my mum's car to go back to hers after (like my huge bed blanket and multiple pyjamas!) but the bag I took in was fairly small - I wasn't expected to stay more than a few hours after coming round.

I had, naturally, completely freaked out the night before and had written on my phone a slightly rambling, slightly soppy 'letter' to my brother and had even set an alarm to go off on my phone that evening telling my mum the password to unlock my phone "just in case"!

Once admitted I was lead through to a lovely room where my mum helped me pass the time with idle chatter before the student doctor arrived. Mum had to go back to work then so I was left to twiddle my thumbs and answer the same questions multiple times - I was starting to doubt my own answers by the third time round!

Having finally got my hands on the after care leaflets I started reading the information and was trying to work out the likelihood of making it to work on Monday morning when I was given a gown and stockings to put on. I was told I could keep my underwear on which was a relief, and could put my long towelling dressing gown on over the top, which was good as I epically failed at working out how to do the ties up by myself!

The stocking though were a nightmare! Awful things that made me feel vaguely queasy as soon as I'd wrestled them on. The foot bit seemed to be wrong no matter which way I turned it and I couldn't work out why only the tips of my toes were poking out.

I had just about got myself sorted and was messing around with my sensory frog and social media postings when they came to take me down to theatre - I shuffled off down the hall in my stupid stockings, slippers, towelling robe and flapping open gown, clutching my frog with the strength of a front rower!

My anxiety was spiking massively at this point, I knew what was coming even though I'd never been through this before. A cannula and then lights out, simple right? Well, it might have been had the first cannula gone in properly! Maybe it was because I was so tense and nervous or maybe it was just bad luck but they buggered up the first try in my left hand and had to take it out. This left me lying there going through my usual shock reaction to a needle (I normally go extremely white and neatly pass out just having blood taken as I can feel the needle under my skin!) and feeling like I wanted to be sick and yet still not able to have the sleepy stuff pumped into me! At this point a very kind lady helped me transfer my frog to my now achy and taped up left hand so they could put the cannula in to my right. I was very surprised they hadn't taken him off my already, and when I slurred something to that effect the lovely nurse told me that I could keep him with me and covered my hand holding him with the sterile blanket! 

Cannula now inserted into the right hand I think I actually passed out before the anaesthetic hit me as it felt exactly like previous needle related faints did!

Next thing I know I'm looking out of very heavy lidded eyes at a glaring white ceiling with a very odd sensation over my whole head and neck. A face looms into view and says something to me but my ears are like they are underwater. Then there's a very peculiar feeling and a slight gag reflex and I realise the breathing tube has just been pulled out and suddenly I'm aware of how strange that had felt!

The voice comes back a bit clearer now telling me that I'm in recovery and doing nicely. Another voice joins in above my head but I can't really tell what's going on, I think I fade back to sleep at this point because the next thing I know the bed I'm on is moving and I'm feeling seasick. Still barely able to lift my own head or keep my eyes open I'm wheeled back into my room and asked to shift across to the bed there. How I managed to coordinate my limbs in the right way to achieve this I'll never know because I was so heavy everywhere I could barely feel my extremities!

Settled into the bed I think I dozed for an hour or so until I was woken by a nurse doing one and taking my blood pressure - a sensation I've never liked and always had a minor sensory reaction to. At this point I became aware of how hot I was and almost desperately tried to free myself of some of the numerous layers on my lower half - I had on the medical stocking, calf wraps of some kind, a foil type blanket, and actual blanket and then a duvet! I was cooking under all that!

I convinced the next nurse to take off the weird calf wrap things that apparently were an extra anti-DVT device to keep my muscles stimulated (even though I was only under for an hour or so I was given them "just in case"!) and I was able to start cooling down. The stockings still irritated me like hell though, tight and extremely uncomfortable in my highly sensory sensitive state.

No one had really been able to give me an accurate idea of what any of this post-op recovery would be like so I was just lying there in my dopey state wondering what would happen next. I eventually managed to get a nurse to give me some painkillers that I could take with small sips of water as my entire left side of my face felt like it had been hit by a car. The surgeon came by around that time to check in on me and tell me that everything had gone well, giving me his office card to call if I had any problems in the immediate recovery period.

After some more sleeping and more begging for the stockings to come off they did and I was able to move my legs about enough to lift myself higher on the propped bed and reach my phone on the side table to text my mum. I was incredibly surprised so little time had passed at this point - only 3 hours had passed from my last text saying the anaesthetist had come to take me down. I still had the cannula in which was causing me discomfort so the latest obs nurse agreed to take it out before my mum arrived. When she got to my room I was feeling miles better as the two little tablets had kicked in and I had regained enough feeling in my throat and jaw to talk reasonably unslurred. We stayed a little while as I was still not fully ready to leave but after half an hour of chatting (including a call to the grandparents) I was okay to get myself dressed and pack up my stuff ready for discharge!

Pt 2 continues in "Tales of Wisdom: The Recovery"

Why I don't want a longer rugby union season

I've been reading a lot of articles recently about the season length and injury attrition, and its got me thinking about just why I agree so much with Billy V and Christian Day.

See, I have the type of life where I can fully understand burn-out and attritional damage. The way being autistic affects me is similar to what Billy and Christian describe when talking about little niggles and injuries that don't heal properly. Only mine is mostly in my head, where the outcome isn't needing surgery or physio, but needing dark and quiet to stop the immense pressure building inside my skull.

Autism Fatigue is a term I talk a lot about so I'm not going to rehash everything I've said before (especially as I'm trying to write a book about it right now!) but the one thing I will say is that the "little and often" approach to breaks only really work when they're in tandem with a longer more complete break.

Days here and there when I don't speak to anyone and don't have to mask are what keep me ticking over week after week, but without that knowledge that I have a longer break on the horizon the mental health aspect kicks in and I spiral into a depressive cycle.

And this is what I fear for our players; that without an appropriate length break/pre season period their mental health will suffer and the knocks/niggles will take longer to shake off when it's so much harder to convince yourself to do the rehab work required.

I don't want to be hearing that players aren't available for selection because they're fighting depression and anxiety as well as injuries, it's bad enough that these guys will suffer through those dark days after they retire, don't put them through it while they're still playing!!

My support of my club and country doesn't wane during off-season, I don't forget about rugby as a sport if it's not on TV every weekend. Yes I miss it fiercely, enough that when it comes back I'm positively chomping at the bit to get over to Twickenham for the LDH, but not to the point where I go looking for another sport to replace it! (Wimbledon and Le Tour don't count, they are events that happen during the day that I watched every year long before I got back into rugby!)

The rugby head honchos don't need to find ways to "keep viewers" around in summer months by stretching the season - a concept that doesn't reduce player work load but actually increases it for the international stars as they will have their post competition rest on a rest week with everyone else and so be available for more club games selection than currently!

Rugby needs to be leading the way in sport in demonstrating to children how to have a healthy relationship with exercise; to not start leading impressionable minds down the garden path to the "must go to the gym everyday" mentality that can cause body image difficulties in young men and women. Rugby union is a shining example of how a sport can be family friendly and still attract the adults, can be home grown and exciting, can be world class and still relatable.

So, to Billy, Christian, and any of the other players saying the same thing, I support you 100% in whatever action you as players choose to take, upto and including a full strike.

I stand with the players, now and always, in saying that player health and welfare must come first in these discussions. Now is the time to take this stand, to protect current and future generations of players and role models while protecting the spirit and ethos of the game we love so much.

#RugbyFamily

How many ways can one journey go wrong?!?!

I dont know what deity I pissed off recently to deserve a day like today!

My day started smoothly, I woke in the Park Inn hotel near Heathrow where I'd checked in last night, the room was an upgrade to the one of reserved (yay) but seemed to have the remnants of someone's coffee in it (boo). Still I'd had food (at the bar as the restaurant had a 45min wait for a table for one!) and had a lovely bath before painting my nails the Sarries colours and finalising what was in suitcase or hand luggage.

I'd missed a hotel hoppa bus by a minute due to the check out desk being busy but I thought with over 2 hours to departure I would be fine.

I'd tried the night before to check in using the Virgin Atlantic app on my phone but had failed so I needed to check in at the main desks, this didn't really bother me until the kiosk rejected my check in and told me to speak to someone.

That someone then typed in my details, got a confused look and took me over to the customer service helpdesk where things got, uh, difficult.

It's turns out that despite lengthy conversations with Virgin Atlantic over the past 4 months (since I changed my flight from an L.A. holiday to this trip to Philly) including one as recently as this week via their websites 'chat' function about using my airmiles to fly home premium economy (they told me there was no availability) no-one mentioned that there was an outstanding balance to pay still!!

Now, bare in mind that I had booked these flights by phone in May, at the time I called to change my reservations I distinctly remember being told a figure (the different in flight prices plus and admin fee) and giving the person my card details!!

And yet I'm standing in Heathrow with my flight leaving in less than 2hours being told my ticket won't print as I haven't paid for all of it!!

I was not happy. In fact I very nearly tumbled straight into a panic induced meltdown on the spot!

I stammered about having paid at the time but in the end just handed over my card knowing that the only way I was getting to America today was to pay and argue for a refund later when I can get a May bank statement.

Of course this brought the usual panic around whether my card would go through! Even knowing I had enough in the account I still really sorry with large amounts and get super nervous that it will reject if my bank thinks it's fraud!

So, card handed over should be end of story right?

No

The lady on the desk was coordinating the problem with another member of the Virgin team off site somewhere (their HQ I think) and was being put on hold constantly, told to cancel things she had done until they'd done something, I got very confused and distressed at this point so don't remember clearly.

What I do remember is looking at the clock constantly with the lovely first lady reassuring me that there was plenty of time. By 7.55am I could see she was starting to worry about making my 9.05 flight though. She very helpfully went to get me a glass of water to take a painkiller with as I'd ditched my liquids already!

Bag drop was due to close at 8.10am. The clock kept ticking as this hold music played . . .

Eventually the person on the line gave the go ahead for me tickets to be printed and the lovely desk lady did them as quickly as possible for me, printing at 8.12!

A dash to bag drop then with the first lady, she'd called over to a colleague to not close my flight for me! I then left my suitcase sat next to a check in desk with 2 others and some Heathrow staff who were to take them to my flight as late arrivals authorised to go on.

I was then hurried through to the First Class security where I said goodbye to the wonderful woman who'd been with me for almost an hour at this point, having got me through security in less than 5 minutes!

A quick march to the already open gate with no time to stop to have breakfast, use the ladies or even buy a bottle of water and I was in a queue to board!!

The staff on the flight could not have been nicer to me! They spotted my obvious distress (I'd been crying for close to 45 minutes on and off) and when I told them I'm autistic they just asked what I needed - I replied a drink to which they asked what I wanted!

After that the main staff member for my section in economy (a lady called Jemma) came over to say hi and have a chat before take-off. We discussed the mornings events and how I was still fairly shaky at this point but that I loved flying so was hoping to be okay soon.

By this point boarding had finished and the doors were locked . . . No-one was sat next to me!!! The day is looking up!!

The flight itself was lovely, the first staff member I spoke to brought me my vodka cranberry almost immediately and I started to settle down.

6 hours of in-flight wi-fi goodness later and I was starting to get nervous again though.

I had to change to a connecting flight at JFK, something I'd never done before, as Virgin don't fly to Philadelphia direct. Jemma again was brilliant in reassuring me and talking through what I would have to do once off the plane, she even offered to get some of the ground staff to meet me and guide me through.

Getting off the plane (and leaving my iPad in the seat pocket as I would realise hours later!) I was a bit nervous, being at the back of the plane is great for my wing watching habit but not so good for a speedy exit on disembarking!!

Eventually I got off the plane but discovered that the ground staff were not nearly as helpful as Jemma was, she tried to get the "assist" staff to help me but was told they "only do wheelchairs" and wouldn't help me. After a few minutes I decided to just give up and thanked Jemma for her efforts saying I was going to give it a go by myself.

Well, Jemma had said to follow certain signs as I had a connecting flight in under 2 hours but when I got to the C&I hall is was utter chaos!

I tried to ask staff members for help but they were so ridiculously unhelpful! On man I asked for help just told me to "go elsewhere"!

Eventually I figured out the machines system and then had to join a long snaking queue that was merging with queues of people trying to use the machines! I end up stood for ages near a family with a toddler and a baby, both of whom were being rather grizzly.

As we slowly shuffled about I got to a point where I could see a staff member manning the queue. I tried to speak to him to ask the estimated time to get through but ended up catching the attention if a female staff member instead.

By this point I was very stress and on the verge of tears and close to losing my words completely.

I tried to ask her what the chances of me making my flight we're, holding my boarding pass to display the boarding/departure times as I was getting so flustered.

I was met with a distinctly snide "ma'am if you want me to help you jump the queue then get that boarding pass outta my face"

I tried to say I wasn't asking to jump just for a time approximation and that I was autistic. She turned her back on me, opened the tape and pointed me to a queue at  customs kiosk saying "go"

So I joined that queue, now with tears trickling and my stress scratching moving from my arms to my upper chest/neck.

I was then joined almost immediately by the bloody family with the young kids who stood behind me talking in their language (one of the Slavic languages I think) while the baby did that half-whimper, half-cry thing.

I was sensory flinching every few minutes at this point and whispering to myself to stay calm and not react but it was getting harder and harder.

Over an hour after getting off the plane and having skipped huge chunks of queues, I was next in line for the customs officer. The lady at the desk completed her business and moved through but the officer was typing on his computer so I didn't move. I felt a nudge in my back. I didn't move. I've been shouted at by American officers before for moving forward before called! The officer then looked up and beckoned me forward so I went.

At his desk he was fairly sunny and pleasant but he made the mistake of asking me if I was okay and the flood gates opened then and soon I was crying nearly uncontrollably as I explained my flight was already boarding!

He got me to redo the fingerprints and photo as the machine I used hadn't registered them properly so my C&I official entry to the country photo has tears rolling down my cheeks!!

He quickly processed me and told me where to go to collect my baggage. In the USA all baggage must be collected at your first entry point and re-checked for the connecting flight which to me seems insane, my ticket is for the whole journey so why doesn't my luggage just go the whole way before I get it back?!?!

So I went to the conveyor belt my flight was coming out of, there was huge amounts of baggage everywhere, stacks of it on the floors between the belts and the one I was at had two flights on it, mine and another.

After close to 15 minutes of waiting and watching the luggage come down and join the belt I asked a staff member who was pulling bags off the belt to stack on the floor. He told me that all the Heathrow bags were off the belt now and on the floor the other side - between 5 and 6, not 6 and 7 where I'd been checking!!

Going round I scanned the bags left. No bag. I check with another staff member, that's all of them she said, if it's not there then it wasn't on the plane.

Great. I now had to run to my next flight with no suitcase!

Getting to the Delta desk to check in for my next flight I was told to hurry as it was boarding and wouldn't wait.

Struggling to rush after 7 hours on a flight and with my dodgy back I walked as briskly as I could to security where luckily (as I asked a staff member there about my chances of making the flight) I was queue skipped again right to the x-ray machines/body scanner.

Of course I'd had no time to sort my hand luggage again so it was a scramble to get my liquids back into a bag and separated from my hand luggage bag before I joined the metal detector queue.

I was then told to take my flip flops off. Now London and most Europe airports have for a long time now said you only have to remove shoes at security if they are closed shoes (trainers/boots/loafers etc) not flip flops. But not JFK. No so I had to go back, grab another tray and throw my flip flops in and then join a queue again that was being held up by a deeply stupid/confused old man who kept setting off the metal detector as he had all sorts of crap still in his pockets!

Finally through and reunited with my things (in such a rush I wasn't registering there was no iPad anywhere) I shoved my feet back into the flipflops and set off as quickly as I could go to gate B42. Of course, as at Heathrow it was a gate pretty much as far from security as possible!!

I tried to go fast but a lower back spasm and shin splints slowed me down so much. I walked as quickly as possible and literally made it to the gate as the staff member was announcing "final call for passenger Ellis"!

On to the plane I had a bit of a shock - it was tiny!! I'd just come off a huge transatlantic flight to to get on to a plane that had 75 seats max was a bit 'woah!'

I changed my seat as I was due to sit next to someone but didn't see the point of making them move to let me in when there were so many free rows as the plane was 1/3rd full!

Well, I knew it would be a short flight but we were in the air less than 40 minutes by my estimation!!

The attendant actually said she thinks we were taxi-ing longer than we were flying!!

Finally at my destination I was united with the lovely Feasey family and got to spill my story and tears on to Sue's shoulder!

A trip to the Delta baggage collection desk followed with an explanation of the situation. Apparently my suitcase was still in London!

Now armed with the information that it would be delivered to my hotel the next day around lunchtime, we received a pack of 'essentials' and departed for the car, where Paul drove us to Wal-Mart for me to buy some clothes!!

I'm a pragmatic hand-luggage packer so had put my match outfit in my hand-luggage with 2 sets of contact lenses so I had all of that with me thankfully, but I was missing essentials like pyjamas and something to wear to go to dinner in that evening as I did not want to spend another minute in my flight outfit!

A $90 credit card payment later and I had a selection of clothes and toiletries to sort me out. The Delta essentials kit was nice but only had the basics - a razor, toothbrush and paste, a folding comb, stick deodorant and a thin white tshirt. I needed face wipes, a roll-on (I hate stick deodorant), some eye liner (all my make up was in my suitcase bar my sun cream stick and perfume) and a proper hairbrush!

Finally to the hotel I could have a shower and put on clean (new) clothes to go out to dinner, having first drunk nearly my body weight in water as I was so dehydrated and hungry! No time at either airport post security meant I hadn't been able to pick up snacks or bottled water anywhere and was only surviving because the transatlantic flight gave out drinks all through the flight!

It was a bit of a horrific day all told and I have lots of complaints and lost property procedures to follow now but I'm finally in Philadelphia!!!

#SarriesStateside
#SarriesInPhilly🇺🇸🖤❤

My city, my heart

We all knew it would happen one day, deep in our hearts we'd begun to consider it an inevitable part of modern life, 'when' not 'if' and a cold dread of waiting to see just how bad the final toll will be.

My heart aches for my city. I may not have lived there since 1995 but London will always and forever be my city; I learnt to count by stops on the Tube, to appreciate nature by time spent in the royal parks, to love history by regular trips to the museums, palace, tower. I lived and breathed the richness of our culture through my neighbours, classmates and family friends.

I've spent a fair amount of time in the Westminster corner of London. Long before my involvement in the Westminster Autism Commission I was familiar with the area, having spent many hours wandering the circuit of The Mall, Whitehall and Birdcage Walk. Its a part of London that gives me a deep sense of connection like no other, where I feel really at home amongst our wonderful history.

I don't need to 'hope' that London will heal and recover from this tragedy, I know it will. I know London and I know Londoners, this will hurt and it will resonate but it will not defeat, it will not divide. London does not cower, London does not flee, we put the kettle on and get on with life, we always have. The Blitz didn't defeat us, the IRA attacks of the 80s and 90s didn't defeat us, the 7/7 attacks in 2005 didn't defeat us. A single man with a car and a knife will not defeat us.

Yesterday I cried for my city, today I miss my city, tomorrow I will travel to my city. And for the rest of my life I will love and be proud of my city.


#LondonForever

My resounding memory of 2016

My resounding memory of 2016 will be of staring at a screen in shocked disbelief.

It's been a year of staring as news rolled in of Trump's victory, the Brexit result, he murder of Jo Cox, the deaths of Prince/David Bowie/Alan Rickman/Carrie Fisher, the awful events in Brussels/Nice/Orlando and all round the world.

Luckily those horrible moments have also been countered with a different type of shocked disbelief for some wonderfully happy things like England's 3-0 whitewash of the Wallabies, Bryony Page's silver medal in trampolining and Saracens becoming Champions of Europe, as well as the genuine 'what the hell' version of shocked disbelief when Froome had to run up a hill in France and the Keirin gold medal race got reset twice!!

So, yeah, 2016, the year of staring at a screen in shocked disbelief.

To do or not to do

Making the choice to do something that I know is going to cause me pain and trouble isn't always difficult. There are times when it's incredibly simple because I know that the short term issues from my autism and sensory issues are massively outweighed by how much I would regret NOT taking up the opportunity on offer.

This was completely true on Tuesday when, despite a work day from hell, I travelled into London to meet a friend for dinner. Keeping this arrangement was more important to me than the issues I was struggling with at the time for many reasons but mostly because it was a one-off experience we had booked to do. Nandos isn't often a good place for me to go as it's generally a veritable smorgasbord of sensory overload; most places with open kitchens are!

But getting to experience the Saracens 'Nandos Takeover' fundraising event was something I'd been excited about for a while and getting to catch up face to face with a friend I hadn't seen since my birthday in February was very important to me!

When it comes to trying to live a 'normal' life as an autistic person it can be really hard to get others to understand just why I'm apprehensive about a proposed activity or plan; NT folk don't have to think about the multitude of things I do to assess whether something is going to be worth while or not. A NT person doesn't have to consider whether having the discussion in the first place will be constructive or just an exercise in frustration.

My workplace is a classic example of this difficulty and how people just keep getting it wrong with me. They seem determined to "protect" me by not letting me be involved in the more 'fun' side of things like big events - wanting to make sure I'm not stressed because I "have a lot of work to get on with" (even though during those big loud events there's not a cats chance in hell I'll be able to concentrate on my work!) And yet the things I need them to think about they seem to stubbornly cling to this idea that if they just tell me to be ok that I will be!

I'm writing this from the passenger seat of the car I'm hiding out in. The staff team have come to a Falconry Centre for the day as part of some end of year wellbeing nonsense; a day of birds of prey and sporting activities. Lovely.

No consideration was given for how I might handle this scenario; in fact when I was first told just last week of the plan (having already got fairly wound up about not knowing what was going to be happening on the last day as it was being kept a secret) my gut reaction was absolute horror.

Now don't get me wrong, I love birds of prey, watching them soar above in the skies, listening to Sir David Attenborough or someone tell me all about their habits and rituals is fascinating to me, they are truly magnificent creatures that deserve a lot of respect.

They also make sounds that are like a spike being plunged through the front of my brain.

I warned my boss about this but still she insisted that I come along and "give it a go" - a typical response from a former PE teacher.

I could hear the screechy chattering sounds building in intensity as we approached, it didn't take long for me to turn tail and run for safety. Maybe I could have coped better had I not just spent close to an hour crammed into a cafe hut thing with 50 odd colleagues most of whom are naturally loud people.

So now I'm sat in a car for 90 minutes while my half of the staff team do the bird experience. Then my group will have their turn at the sporting activities; shooting, archery and laser clay pigeon shooting. In the middle of a farm. Lovely. More stuff I can't cope with. I suppose at least my main reason for not wanting to take part in those activities is more obvious to people; the bright blue muscle tape running up my neck from my shoulders is pretty conspicuous!

At least I had some warning about what today involved so I could prepare some what; my ear plugs are near by in case I need them, I have my ipod on and playing calming music, I have recovery snacks with me if needed, my stress aids are in my bag and I didn't drive myself here so I don't have to worry about being safe to drive home later!

I'm isolated, with a building headache and feeling a bit fed up with the situation. Sums up the whole bloody academic year quite frankly! Thank crunchie that the holidays begin tomorrow and I can get on with my work in peace over the next few weeks!

Running on Empty

I can often predict when tough days are coming but even then the level to which they affect me still surprises me each time. Sat in a filling up stadium miles from home I can feel the affects starting to take hold; the vice grip headache tightening, the tiredness and poor concentration, the tightness in the neck, the need for sunglasses even though it's cloudy because it's still too bright for me.

I'll do what I always do and push through it because I want to be here doing what I'm doing and it's important to me that I don't let my Autism 'win'. But boy am I going to pay for this tomorrow

Dealing with over stimulation in public

The trouble with doing anything really big and popular (like attending a Derby Day!) is that it's virtually guaranteed to cause a whole host of autism problems at the time and/or later.


The main reason for this is that, obviously, a lot of other people are wanting to do it as well so there are massive crowds to deal with, often lots of excitable children running around, generally public transport to deal with and fairly often nowadays a big publicity/marketing machine blasting out adverts and music at high volumes.


All of this leads to a massive drain on energy levels just to keep that 'public face' mask on - the one that looks happy and calm and isn't showing the intense pain that's being experienced at the time. I understand the need for big venues (particularly sports venues) to create and stimulate 'atmosphere' but I would like some acknowledgement of the cost of this on people like me.


Today's Saracens vs Quins game at Wembley was wonderful but there were moments when I could have done without the random blasting of pop music and the overly excitable commentator. Overall though Wembley/Saracens did pretty well at hosting an enjoyable but relatively autism friendly event.


By far and away the worst event I have been to in my life however was back in November when I went to the O2 arena to see the Tennis ATP finals (Murray vs Nadal). What I endured there actually drove me to tears and ended up forcing me to leave early as I simply could not bear to remain in that environment any longer. The whole venue was blue coloured (as it was sponsored by Barclays Bank who are blue themed) which meant that wherever there was lighting it was the blue shade that makes me automatically think of emergency services sirens which leads to low-level but consistent anxiety. Most of the problems I had with the venue (very airless and 'close') could have been overcome but for the damn graphics the event insisted on using every time there was a challenged decision - a pulse beat on the screen and at full volume echoing across the court. Now, maybe its just me but I hear a beat that sounds similar to a heartbeat and my heart subconsciously tries to mimic it, leading to an increased highly-anxious heartrate and my breathing starting to go into hyperventilation. All of this led to me needing quite a bit 'down-time' to recover enough to drive my brother and me home that evening, a recovery that was set-back by the fact that I had to deal with getting the tube from the arena back to where my car was parked in Westfield!


The issue of 'what happens afterwards' came to the forefront today as well, while the getting to Wembley wasn't too bad and dealing with crowds going in was surprisingly calm the exit, naturally, wasn't. Even though I stayed to watch the Sarries boys do their lap of the pitch and then wasted another 15 minutes or so faffing around finding where my friend had left his bike, still the crowds for the tube were horrible to deal with. I wish that there could have been shuttle buses specifically running people to the nearby major train terminals (Kings Cross, Euston, Paddington etc) to allow for those of us going there to avoid the tube, leaving it just for those who were connecting to other parts of the City.


I made it home in one piece mostly - a major headache and quite a considerable need for quiet, but in a lot better shape than from other times I've been into London. Despite how good today has been though I know I've still got recovery ahead of me, tomorrow will probably come with a strong desire for sleep and quiet processing time along with other side effects such as affected appetite, clumsiness and probably achey joints.




It was worth it though - Stand Up For The Saracens!