Weathering the storm of unexpected change.

 I am furious!

Today, I was due to have surgery on my hand, a surgery which I had been preparing for since mid September, and been working through the details of since mid November.  Today, I got up at 5 a.m., as did wife and kids (well, actually, sometime between 5 and 6) to be at the hospital for 7. I had prepared myself mentally: go in early, get seen early, see consultant, see anaesthetist, go to theatre, general anaesthetic, surgery, wake up, go home. And to start with, it went according to plan.

Until the anaesthetist turned up, and decided he would rather do a local anaesthetic than a general, and spent time trying to pressure me into that. After 10 minutes of cajoling, I told him I had spent weeks preparing for general and I don't handle last minute changes of plan well. He could see I was getting upset, and agreed to do a general if that was feasible.

That shook me up some, and I started reading my book to try to calm down.  Just after 9, wife arrived, almost simultaneously with the returning anaesthetist, who tried to tell me as politely as possible that he was sorry but my surgery couldn't go ahead today, but the good news was that they had already booked another appointment for me in a different hospital.

So, to anyone reading this who knows about Asperger's  and has been following my blog, how well do you think I took that?  change of date, change of venue, sudden call off after an attempted change of plan on the day?

Safe to say the simplest description would be "not well".

I sat in silent shock, I cried, I stormed off, I came back and shouted, I stomped out of the building before coming back to try to find out when they had booked me for, and it turns out that they think the best time to operate is the day before my birthday (a day which has always been disastrous to me).

I was so angry! There's no way they can understand the amount of mental preparation I have put into this, not to mention discussions and agreements I have had at work - a job I only started the week before I found out I needed surgery - to ensure that they understood the need for this, and let me have the time off that I required.

And if the fact the surgery was cancelled wasn't bad enough, the reason for it was, put simply, that I'm too fat.

Seriously. I'm too fat to have surgery on my wrist and thumb.  Funny how that didn't come up in the hand clinic originally, or in the phone consultation when I gave them my details including my weight and height. No, I'm too fat today for the facilities at this particular hospital, and I'll need to have surgery at a different one.

So, to recap: the surgery was cancelled, on the day, at the last minute, when I was already in my surgical gown, wearing tags and with lines drawn all over my arm to indicate where incisions would be made.  The anaesthetist said I was too fat to have surgery and rebooked me to another hospital, closer to Christmas which has, by the way, already interfered with my Christmas plans.

Like I say - furious! It has taken me a good 3 hours to calm down to the point where I don't want to scream about this! This is exactly why we need services like ASQ to be able to collectively list experiences like this so service providers have something they can refer to and see examples of good/poor service and how it affects the ASD community.

So, now I have to prepare myself for surgery again, in 11 days, in a different hospital, at a different time, as well as come to terms with my weight - and let's face it, being told you are too fat for surgery, apparently because I would likely breather equipment, is something of a wake-up call!

Of course I can do it, but the level of stress this has given me today is just unreal. So much, in fact, o have decided to still have the day off work as I don't think I would have achieved anything in this frame of mind.

God bless the NHS.

Suddenly, surgery. WTF???

It was hard enough going to hospital yesterday. My thumb has been getting sorer and less mobile for months, and I've been seeing a physiotherapist recently.

On Friday I managed to badly injure myself while attempting to take the till receipt from the checkout attendant at Tesco (Really!). It was so bad I immediately went to minor injuries unit to look at my hand.

They put my hand in an old-lady-style dressing and referred me to the hand clinic on Wednesday. Cue a weekend full of me clumsily knocking stuff over and insisting I can still lift & carry with ease (LIE!), followed by a hand cramp incident on Tuesday which meant I had to come home from work.

By Wednesday I was really ready to see a doctor, but I don't really enjoy hospitals that much.  So wasn't it nice of them to forget I was there for 2 hours!!!  At least when they realised their error they booted me to the front of the queue and gave me preferential treatment from there on it.

One pragmatic doctor assesment later (he just grabbed my thumb and bent it back quickly and i screamed) and i'm on my way to X-ray. 20 minutes later I'm sitting in from of the doctor again (protecting my thumb this time!) and he's telling me that what I need is reconstructive surgery as my volar ligament (?) on my thumb is basically not there any more, and they'll have to open my thumb and my wrist up to reconnect one to the other using tissue they will stretch from my forearm.

Seriously???


I just have a sore thumb!  please be kidding!

but they are not. I am on my way to having what the doctor described as the most complex surgery they do on that part of the body.

Followed by 6 weeks in a cast and then months of physio.

I can't believe it. I'm just shocked, and more than a little scared. Its my right hand and I am right handed, and I can't help thinking about what would happen if it goes wrong.

I am also worried for wife. she already has 3 people with ASD in the house to worry about, without then having to pick up the slack for the things I can't do during my rehab.

Fuckity bawbags!

What I'm hiding from

For a week or so now I have been aware that I'm avoiding writing a blog, I'm avoiding tweeting, and I am avoiding thinking about or addressing "the Aspie Question".

And the reason for it is pretty simple, and pretty sad, really. I don't want to acknowledge that I am Aspie.

There are some days where the knowledge of AS and how it relates to me is a real comfort, as it means there is something that explains the often inexplicable in my life: the odd choices, the strange habits, the behaviour that even I have never been able to justify.

But then there are the other days, where I realise how different I am, how little I understand the people around me, how often I am excluded from conversations in a passive fashion, just because I can't read the body language of others, and I don't react as they understand.  Sometimes I look at it, and think that this is too much of a burden to bear, that if I stop acknowledging it I can continue on with my life as I understood it before someone suggested I might be Aspie.

However, today has stopped me in my tracks because of two incidents, each of which is powerful in their own right and together brought me to tears.

At my work, one of my colleagues has M.S.. I am her line manager, but she is one of the only people who I have told about my AS issues, because I feel she understands what it is to be different but look the same, and I really value her opinion and just to have someone to listen to me who can get it.  To be honest I see her more as a friend than a colleague. A couple of days ago she had a M.S. relapse, and as a result has permanently lost some feeling in her hand, her arm and her leg, and some bladder control.  She told me this, and I was truly sad about it.
 Today, I was spoken to by my boss, who told me that my colleague with M.S. doesn't feel she can talk to me as I gave very little reaction to her news to me about her relapse and her lack of feeling in her hand.  I was appalled! I am really sad for her and sometime give her lifts into work to try to make things easier for her, and am genuinely concerned for her well-being  but to hear her view, apparently all I did was stop typing for a few seconds when she told me, then started typing again.
 When I told my wife about this, she said that's normal for me. the bigger the news, the more emotional, the less likely I am to react to it. I simply sit still and absorb the information. I wasn't really aware of this, but I thought back and realised that she's right. Petty things can get me very animated. Big things stop me dead.

But following on from this, wife said to me that it often appears that I take things too well, and I joked about when our eldest was born by c-section. I was at work and the hospital called me to tell me that I didn't have to worry and that the baby would come today, I just said "OK, call me if the plan changes" at which point the person on the phone said "ah. no. you're maybe being a little too laid back. you need to come to the hospital now!" Wife didn't laugh though. she pointed out that she had thought about that recently, in the light of AS, and realised that this was typical of my reaction. someone said not to worry, so I didn't, but it hadn't even occurred to me that she might feel lonely, or in need of company, sitting lone in a delivery ward awaiting an emergency c-section, which is major surgery when you come right down to it.

And so I sat there, at the dinner table, considering that moment of 5 years ago, realising that not once had I considered how lonely and scared she might have been; how worried for our baby's health. I don't know what I did think, I really don't. but sitting at the table, for the first time, I became tearful thinking about how hard it must be on wife. 2 AS children and an AS husband who is now undertaking a journey of self discovery.  How hard is it on her to hold all this together. how often her needs get put last. how often her desires get overlooked.

And while I deny my Aspie nature I will never change, and I will always be that self-absorbed.  So, my task tonight is threefold:

1 - Read theories on Aspergers and dealing with it by experts, and find things that work for me
2 - Write my blog and remember why I started doing it in the first place as a self-therapy
3 - Acknowledge, and never forget.

Some days its hard, and some days its ok, but its an ever present fact that I need to face

I am Aspie

Emotional reactions

It's always surprised me when I have later looked back on things how i react to things emotionally. I have 2 daughters who were both premature, and in both cases there was the very real danger that either they or my wife would die, but this was all taken in stride. I always thought that I would vent my emotions about it later, but never really did. Actually, first time my main emotion was happiness that I would have the house to myself for a few days. It's horrible to admit but its true.

In fact now that I think about it I remember being annoyed when the hospital kept changing dates and times of events happening such as operations and I was more annoyed about the late change of detail than I was concerned about the operations.

I suppose its that I can easily take on board any fact as it relates to me as long as the schedule doesn't shift.
That's good, right?