Ten Years On - my diagnosis anniversary pt1

Time is a funny thing, I've written before about the passing of time and how it brings forward an odd sense of curiosity and anxiety.

When considering the events of the past decade I'm almost overwhelmed by the sheer volume of memories and emotional attachments to things I barely spare a moments notice to normally.  I find that as I reflect on the ten years that I have lived since my diagnosis in 2009 I almost can't recognise the person I was then, so much has changed. And yet so little has really, core personality and values haven't altered in any fundamental way, just matured and shifted with my growing understanding of the world around me and the solidifying goal of the person I want to be.

My journey to diagnosis was not nearly as long or difficult as a lot of other women's, I was very lucky to be supported so well by my incredible family and have a solid network of friends at the time (to my sorrow these haven't lasted the trials of adulthood and geography). But that doesn't mean it was simple. My journey technically started at 15, got kneecapped at 17 and took until a soul-searching holiday at 20 to recover and start the nearly 2 year process to finally see those immortal words in print "I believe that she does meet the formal diagnostic criteria for an Autistic Disorder" - it's slightly clunky medical terminology but it was from a clinical psychologist and that was what was needed!

I remember vividly the days leading up to the appointment- the terror that clutched at me over not being believed, being called a liar or attention seeking as I had been so many times in childhood. I desperately wanted the validation of the diagnosis (I'm still at scientist at heart and want empirical evidence to support any theory!) but the overwhelming feeling on entering the assessment room was pure fear.

I don't recall much after that. My mother has told me some of what happened as she was in the room with me answering questions about my childhood and reactions to things. I'm told my responses and actions where that of someone trying to hide - curling myself into my chair in an almost foetal position, turning my head away from them and getting very lost in my memories, there were so many that I had buried away. It also took a lot of work from the psychologist to get me to drop my mask and start responding as I would instinctively instead of as I had trained myself to, so many years of masking had made it such an ingrained habit that I was struggling to not edit my responses even though I knew that I needed to show this professional the raw real me if she was going to diagnose me properly.

After the 3 hour appointment was over we travelled the 15 miles home and I went to bed. And stayed there for the next 3 days basically!

Because that was how long I needed in isolation, away from any responsibilities or external inputs to rebuild my walls and shore up my defenses again.

And that’s what I continue to do ten years on, rebuild my defences after a difficult experience in the peace and safety of my own space. Because if there is one thing I’ve learnt over the past ten years, it’s that I need that time to recover and get back to my baselines; if I don’t go through a proper recovery protocol after a negative experience then the damage will build, resulting in a fairly catastrophic breakdown that can take days to even begin to recover from.

But it’s not just negative experiences that need recovering from! Social Hangovers are a part of my life I’ve become used to but they, along with general Autism Fatigue, can still have a large impact on the capacity for me to function in the days following. I’ve learnt over the decade to adapt my expectations of events and how long I can be at them, as well as working out key exit strategies and having different recovery plans based on the type of event in question (ie a night out at a pub will involve a more quiet and sensory plain recovery where as a busy family day event may lead to sensory seeking the next day with a large dose of free flowing rudely-honest commentary aimed at the TV as a result of having had to keep my speech family-friendly all day!)

Its been a long ten years looking back at everything that has happened, both in personal terms and the wider globe! But the more I reflect on what has changed the more I become hopeful for what still has the potential to change, what our world might yet become.

Everything I have learnt over the past ten years can effectively be summed up by two things;

my beloved Saracens values:

"Work Rate, Humility, Discipline, Honesty" 

and my favourite Henry Fraser quote:

"Always look at what you can do"

I'm going to keep working hard but be disciplined with the energy I have, keep being honest about my limitations and have humility about my achievements, and no matter what keep focusing on what I can do, even if today I'm struggling.

After all, who knows what the next ten years hold?!?!

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🇺🇸🖤❤

Game over

This weekend has been a difficult one for me. A disappointing one because yet again I let my expectations get too high.

It's hard to explain, particularly when people have this curious view of autistic folks like me not having empathy or emotions, but I feel very deeply and can get majorly affected by others actions or inactions. I also can't stand getting caught in silly hostile 'politics' and nasty cliques.

I try so hard in my life to not let things affect me and yet time and time again I'm finding myself in these situations. The kind where I end up in tears and in meltdown mode because I don't know how to handle things.

My gut reaction to this weekend is to walk away from everything. From both SOT and the SSA, from my 30 games challenge, from the Saracens in general.

I hate myself for reacting in such a way, I know I need to take a step back and think pragmatically about everything but it's hard to do that when your memories are tied so intrinsically to your emotions.

I understand in my brain that the team don't have to come round and interact with the fans, I know that they know nothing of this stupid pettiness between the two groups and I know that I shouldn't expect more than just a game of rugby when I go to a match. But it still hurts to see the team go to the other corner of the pitch to say hi to the fans there, to see them look at the flag we were holding high and merely applaude and walk away. It shouldn't hurt, I should be more mature than this, but right now I feel like the kid who didn't get invited to the party again, the kid who can't find anyone to sit with at lunchtime, the kid who doesn't want to go to school anymore because it's so miserable.

I've worked too damn hard to get away from being that kid. I did my time as that child when I was in school and I refuse to do it again as an adult.

I need to stop setting my expectations too high, learn to want to be happy with "okay" and stop thinking that two "greats" in a row will mean anything changes. And to stop believing things people say just because they're saying something I want to hear/read. It's time to face the reality of life again after being in a bubble for a while. Show up, watch the game, go home.

I will make 30 games for this challenge. And then I will walk away with my head held high, leaving on my terms. It's about self-protection you see?

Autism Fatigue vs lots of exciting plans!

I've talked about the concept of Autism Fatigue before but it's never been more obvious to me than when I have a period of time like I'm currently in. I'm 9 days into a crazily busy 18 day stretch and already I've had to cancel 3 different plans out of the 18 things I've got in the diary (and that's not including the standard going to work next week!) I should note that I am incredibly lucky to have be given the opportunities I have and I am very grateful for the support of my university tutor, my family and the staff involved in the various work I've been contracted to recently.

I had to cancel certain things this past week because I was having to make choices between standing by plans I'd committed to and the need to protect my own health - mental and physical. It doesn't help that I'm still recovering from a nasty virus last week or that I've managed to pick up a cold along the way to join the fun. My point is that just because I want to do something doesn't mean I should; those decisions have to be made on a day by day basis and that unfortunately means letting people down at the last minute sometimes.

Most people have been fairly understanding recently, having a virus that's leaves you with dizzy spells and nausea is understandable to most people. Certainly a lot more understandable than Autism Fatigue is.

Trying to get people to understand the concept of social overload or the need to conserve energy for a more important commitment the next day is difficult. A lot of people still don't understand how draining social activities can be - even if I'm enjoying them immensely!

It's true that the satisfaction I get from doing things can give a boost to my flagging energy levels it's rarely enough to compensate for the losses due to sensory environment and stress.

I hope as time moves forward and more of us are talking about these concepts that society as a whole becomes more aware and more forgiving of our needs. I've had to plan these few weeks so very carefully  to ensure that I make it to the end still in one piece and still able to enjoy my final event - England vs Italy in the 6Nations at Twickenham - a hell of a way to finish off my 30th birthday week!!

Isolation vs over-stimulation

I've come to realise recently just how isolated my life had become from what it used to be; I spend the whole working day with the same people, very rarely interacting with anyone new, before coming home to an empty flat where I spend my evenings alone with my TV and laptop for company, making the occasional phone calls to the same half dozen people. My weekends are often just me and my revision / housework / recovery processes, once in a whilst interspersed with a visit to/from a family member or a trip into London to do something Autism related.
Compare this to the almost manically busy life I used to have when I was a student - days filled with lectures, union meetings, social groups and endless nights out I barely remember (but know were good fun!) That life wasn't sustainable though and I often found myself suddenly having to spend periods retreating from my plans and hiding away in an almost hibernating state to restore some balance. Sometimes just coming down from an over-stimulation was a long slog on its own, the world didn't stop being noisy and bright and demanding just because I wanted a time-out and people weren't always very understanding when I tried to explain that it wasn't an alcohol hangover I had but a sensory or social one.
The tricky thing in life is finding the mid-way point between what's needed for recovery and isolation and then putting that on an even functioning keel with social activity (bearing in mind that work/going to the supermarket/filling the car with petrol all count as a form of social activity!)
I find now as I'm older and more knowledgeable about my own limitations and predictable reactions that I can start to formulate ways to 'have my cake and eat it' - by finding activities that fulfil my need for interactions whilst still allowing me enough down time to be ready to face whatever the next day may hold.
Throughout the Sunday-Thursday period I have to tread carefully to ensure that my working day the next day is not impacted upon by any lingering effects but come Friday/Saturday I have a lot more freedom to push my boundaries and go for the full-on 'social experience' and all the consequences that follow it. Its difficult to explain at times but even the smallest of things can add to a growing mountain of stimulation leading to overload; one too many announcements on a train, the overly strong perfume of the person in front at the cashpoint queue, multiple TV's showing different games/sports in pubs, too many new faces and names to remember at once, the list can be endless.
My latest excursion into London (and straight back out to Reading) for Saturday's Saracens vs Wasps semi-final was one of the more bizarre yet successful experiences I've had recently - a match I hadn't planned to attend yet found myself in possession of tickets for courtesy of a Twitter competition. All of a sudden not only did I now have plans for a previously free weekend but I had to work out a whole host of details, including who I was giving the other ticket to! Family and friends were all unavailable as due to the short notice (I found out I had tickets on the Tuesday) they were all booked up. Luckily social media came to my rescue and I was able to have a really wonderful time at the game with someone who not only appreciated the ticket but was able to give me a crash-course introduction to being a full-on member of the Sarries family!
I know not every experience I try will have such a happy ending (and most definitely wont involve that much wine being consumed afterwards!) and some will have potentially catastrophically bad results should my coping strategies fail me at the worst times, but I do know for sure that if I don't keep trying new things and pushing myself out there in the big wide world that the isolation I will be faced with will be horrible.
I don't like being on my own too long, I am, at heart, a people person who loves watching others enjoy life. I just have to weigh the balance of my need to indulge that side of my personality with what it will cost me without retreating into a fear-dominated mind-set of not doing anything 'in case' I can't cope.

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!

The consequences of a meltdown at work

We had a fire drill at 12.20pm today.


This was a rearranged one from last week - I had been told the original date/time and left the building 10 minutes in advance to ensure I didn't get caught in it (as I am allowed to do by our H&S officer) but when it got rearranged due to an unavoidable issue my only information was that they 'hoped to have it next Tuesday' - no confirmation, no time, and the first day back after a 4 day weekend . . . (I spent most of today thinking it was Monday, despite knowing yesterday was Easter Monday!)


So, its 12.15pm and I'm knee deep in a particularly tricky report I'm working on and quite frankly feeling fairly below par already as the weekend (being a family orientated one) was fairly tiring and I hadn't managed to get enough sleep Monday night as my brain kicked into overdrive at about midnight and didn't turn off til gone 3am!


12.20ish and the siren suddenly wails through the building.


Now, I'm actually pretty good at the first reaction part - I can compartmentalise my base reaction and squash it viciously whilst dealing with the 'getting out of the building' part but once outside all the rush of panic, sensory overload, claustrophobia (from coming down the stairs with a dozen other people) and general anxiety comes out in the form of hyperventilating and pre-meltdown behaviours emerging.


Its worth noting here that I'm incredibly lucky in working for the same organisation as my mother, and by sheer luck we were both working in the same building today so she was able to take care of me when I needed help with my recovery process.


The fact that my colleagues still don't seem to understand the implications of things like fire alarms on me is disappointing. Co-workers I encountered over the course of the afternoon seemed surprise that I was still suffering 2-3 hours after the drill, not realising that a post meltdown recovery can take hours. I actually never progressed into full meltdown as I retained a level of control during the incident but I was certainly on the very limit of my capacity for control and came very close to toppling over the edge into full blown meltdown at least twice.


It took me until nearly 8pm to feel fully 'normal' again this evening; only after eating junk food (dominos to the rescue) and taking a 2 hour nap on my sofa did I finally feel back to my baseline levels. I still don't know how I'll wake up feeling tomorrow - that will all depend on tonight's sleep quality.


The hardest part of the whole afternoon for me was trying to verbalise my pain to people - I have a multitude of different categories of headache but explaining the difference between 'dull top vice' and 'consistent mallet' to people can be interesting - especially when I'm tripping over my own tongue as exhaustion robs me of some of my fine motor control. I also lose control of some of my external 'masks' and allow my autism to show through more, become more abrupt and harsh with people and a lot more demonstrative of my displeasure - when you're in pain other people's feelings/opinions become a lot less important!


The tiredness is also a shock to a lot of people, they seem to think I can just 'shake off' a reaction and be fine 20 minutes later, they don't seem to understand that, a lot like a burn, sometimes the initial pain isn't the worst part and that the damage can still be developing over time. I'd like to see them moving at full pace when they have a brain that's occupied with self-preservation and healing.


The sad thing is that one day they will all realise what its like because a lot of what I describe my recovery process to be like is how my grandparents describe ageing - the frustration of not being able to think/move/react as quickly as before, the slipping of hand/eye coordination and motor control, the verbal mistakes, the brain 'blankness'.


Maybe one day research into Autism or brain conditions such as dementia or strokes may shed some light on how to help people like me in meltdown recovery. Until then I'll keep doing what I'm doing and try not to get myself fired in the process!