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"

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!