Tuesday, December 29, 2009

Being Prepared

I am not an "end of the world as we know it" died in the wool survivalist inspite of owning a 4WD, but a number of events over the past year or so have shown up the need to be prepared.

Firstly I had to evacuate after a fire, and did not take a lot with me, I was not much better prepared the second time either when I left altogether quicker than the first time forgetting my keys to let me back in again when it was all clear.

I now have a fire evacuation bag packed with the most essential things packed, including spare keys. It contains insurance documents, cheque book, essential clothing and all those essentials I would otherwise have to buy, and what is in it is not based on any hypothetical shit hits the fan list, but on what I had to buy last time.

I could if I had to, leave my flat naked like Archimedes straight out of the bath, grab the bag which is always by the door, and be able to make myself decent in the meantime from the contents of the bag.

However my more recent emergency showed me that is not preparedness enough, because I was faced with a different kind of emergency where taking that amount of junk was simply not appropriate. So I have resolved to pack a hospital emergency bag now, which contains the basics you need for a short stay in hospital, pajamas, slippers, clean underwear (yes I know - as your mother always told you - you are supposed to be wearing it, but you will need a change) basic wash kit, and a cheap novel aswell.

Apart from that long experience has taught me to be prepared for other emergencies such as power outages, Having grown up in an era which included the miners strike and the three day week, I always have a supply of candles, hurricane lamps and fuel, and camping stove. I actually have more than this in that I have my usual camping gear as well which includes chemical toilet, 12v gel battery, lamps and solar panel.

I have to admit however I don't yet have any defense against the proverbial Zombie attack, that is something I shall have to work on :)

Thursday, December 24, 2009

My journey to Wales, Will it happen?

If I had not been derailed by my hospital stay I had planned to be driving off to Wales today. However looking outside at the icy roads and the fog, I am not sure I would not have changed my plans anyway.

I am pretty determined to go tommorrow which will mean starting early in the morning to get enough daylight for photography, but again I think I have to pay regard to the weather.

I had a long conversation with my brother about many things yesterday. My recent scare was a scare to him too, being as he is the one who will have to pick up the tab if anything happens to me.

We talked of this old story in the Arabian nights, where a guy sees the grim reaper in the Marketplace looking at him, so he gets on his horse and escapes to the furthest reaches of the kingdom, only to meet death there, who expresses surprise that he had seen him so far away in the morning when he had an appointment with him elsewhere.

In other words I have more chance of coming a cropper on the roads than succumbing to a heart attack, so it is a matter of common sense and taking another opportunity to visit Wales during the Christmas break if the weather is really against it. It's not snow that bothers me, but ice and fog, and also being sure that the beta blockers I am on, do not impair my driving in any way.

I'm driving round to the shops later to fill up on diesel. It may be I don't get so far as Wales tommorrow and will go for a shorter journey instead.

Tuesday, December 22, 2009

Reports of my demise have been greatly exagerated (a close run thing)

You will note that my recent postings have had family very much in mind.

I will now relate what ultimately happened to my Dad as a preamble to what has just happened to me.

In August 1985 at the age of 58 my dad was at his ladyfriends house hanging a picture when he experienced chest pains. He thought nothing of it at the time, but the pains continued throughout the afternoon. In the end it was so severe that he called an ambulance and was rushed into hospital. He had experienced a heart attack out of the blue, a week later he was dead of a second massive heart attack.

Well Sunday Evening I was sitting in my chair over the computer and I experienced the combination of chest pains and my heart beating very rapidly and hard against my chest, as if I had just run up a flight of stairs.

Now I am not actually unused to heart problems, I have been twice to emergency before, first time with an irregular pulse and the second time with the combination of an irregular pulse and chest pains. In each case I was inspite of the discomfort able to walk to emergency, and although I did have an irregular rhythm it was diagnosed as 'benign' and a subsequent referall to a cardiologist assured me of that.

What I felt on Sunday was different, it didn't feel irregular it was too rapid. Normally if you have a rapid heart beat that is just part of the bodies flight or fight response, brought on by some anxiety, if you fly with it, that is to say get up and go for a walk, it will settle down. Well this did not, I could not even walk about the flat without it getting worse, and there was the chest pain too and it was not going away any time soon, so I decided it was time to call an ambulance.

By the time I got into emergency (and it is nothing like you see on television,if you are brought up on a diet of casualty, ER, and House it is mostly boredom and nothing happening at all) my heartrate had slowed down somewhat and by the time I was hooked up to the monitor there wasn't anything unusual or scary to see, which was reassuring. However the pain still needed investigation and I was for a chest X ray, In addition the Dr wanted to keep me in, because the only way to establish beyond doubt if I had just sufered from a heart attack would be to carry out a blood test which they have to wait a certain number of hours for whatever is supposed to happen to happen before they test for it.

I then had a 3 hour wait on my own in the cubicle while they found an empty bed. (the usual situation at this time of year, with the cold snap there are a lot of falls and a lot of respiratory diseases.

Well the arrangement of the wards is into 4 bed bays and at 54 I was by far the youngest in my bay. What was rather traumatic for me, apart from worring about myself was the flashbacks that the guy next to me was causing. From listening to what the Dr's and his relatives were saying, and the fact that he was on oxygen and clearly having breathing difficulties, he was a man of 71 with chronic emphysema, complicated by pneumonia, and he was not well at all. It reminded me all too much of my mum's last hours in hospital in very similar circumstances, it also showed me in retrospect how little chance of survival my mum had, when they brought her in, the dr's suspicion was probably right she was in the terminal stages, because she was in a lot worse condition than this unfortunate gentleman, who during my stay was showing signs of improvement and stabilisation.

Unfortunately for me, quite apart from the poignant reminder of less happier times for me, the noise of his oxygen was keeping me awake for the two nights I was in.

I could complain that an autistic with sensitive hearing should not be in that situation, but the truth is, in an emergency you need a bed, wherever it is and if your life is at stake (as it might have been) you have to go with it.

Well in truth this wasn't the worst at all, the worst was being brought in unprepared late in the evening by the time you have a bed, and missed all the meals and usual hospital rounds. Then there are the bright lights, and other sundry beeps and noises, and above all not knowing what happens next.

I would have appreciated knowing at what times I would be disturbed for monitoring temperature and blood pressure, what times the dr's come round, what time the meals were. I was left to figure out for myself how the adjustable bed worked, and where the emergency call button was, in fact I didn't find that until the middle of the next day.

Another annoying thing was the cold. I was just left on this bed initially in a hospital gown and single sheet, there wasn't even a pillow, I had to ask several times before I was brought one, and is little wonder every time a nurse asked "have you any pain" I could say "Yes my shoulder" For the first night I was freezing. Only the next day when I was up and wandering around in my gown did the nurses find me a pair of pajamas and then some extra blankets.

The hospital didn't get it right, they did not take the blood test at 7 am in the morning as they were supposed to, and of course it didn't come to light till after the Dr's ward round. I had to wait till 4 o clock, which was some 3 hours after I had been assured that they were coming soon. Worse that that I had been told that if the test was Ok I could leave that evening. (I wasn't really keen on staying as I was getting extremely worried about my flat being left in a hurry)

Anyway I had been told that the test results should take a couple of hours, so I duly started counting the minutes. Needless to say well over two hours later the results were not available. Indeed I was eventually told that even if the results did come in that evening I would still have to stay in overnight, because the Dr's had gone and would not be back till the morning to officially discharge me (if all was fine)

Fortunately I had some extra blankets by this time, and had been fed at the proper mealtimes, having had nothing but sandwiches to eat the day before as I hadn't yet eaten at home when I called the ambulance)

Well I couldn't sleep and spent a lot of time pacing up and down the corridor outside. I was feeling physically better by that time, normal heart rate and B P so at least I could get up and wander about so long as I did not wander off the ward altogether.

The Ward sister told me before she went off duty for the night sister that the results had come back and she could look on the computer for me. I was a bit nervous in case they were not what I wanted to hear, but fortunately they were clear, so at least I could spend the rest of the night in some certainly that I would be able to go home the next morning.

And so I was pretty eager to get the silly needle out of my arm (put there as a matter of routine in case I needed anything intervenous, but made life rather uncomfortable) and to get dressed.

WEll early in the morning I left, they informed me they had emailed my GP, so I did not need to wait for a letter to take down to the surgery.

So I went home, called in the surgery on the way and booked an emergency appointment for later on.

By the time of the appointment they hadn't got the email yet.... but I was able to explain what had happened, because I was concerned that this might happen again, and what was I supposed to do. He prescribed me beta blockers (which I have had before, for occasional use, though not having felt the need for some time, my prescription had lapsed and was out of date.

What should I do if the same symptoms re-occured, I asked. Call an Ambulance he said, that is what he would do in the same circumstances, the fact that it may have been a false alarm this time does not mean it will be the next, and far from being worried about calling an ambulance uneccesarily I should be concerned that it always is always better to haved called one and the symptoms turn out not to have been a heart attack in retrospect, than to have had misgivings about calling one and died as a result.

Saturday, December 19, 2009

Not all research is cause or cure

Here is a report of a recent piece of research undertaken at my Uni.

No best approach to education for all children with autism

There is no one best approach that can be used in educating all children and young people with autism, according to a report by researchers from the University of Birmingham’s Autism Centre for Education and Research (ACER) and St. Patrick’s College Dublin, published today by the Republic of Ireland’s National Council for Special Education (NCSE).

The report is an international evaluation of strategies employed in educating children and young people with autism, based on using a set of rigorous guidelines to evaluate the latest studies from around the world, published between 2002 and 2008. It also includes data from policy and best practice guidelines from the United Kingdom and Ireland.

Dr Sarah Parsons, from the University of Birmingham says: “Practice has outpaced research. Although experts agree that a range of special and mainstream provision is important for children with autism, there is no clear evidence from research to help families and practitioners decide which kind of school will be best for their child.”

The report reveals major gaps in the research base for interventions commonly used when working with children on the autism spectrum. There is a particular lack of research regarding good provision for secondary students and those in post-compulsory education.

“Researchers need to address these gaps in the future and ACER has plans to develop research bids which focus on some of the key areas highlighted in the report,” Dr. Parsons stresses. “There is a growing consensus from expert opinion as to what constitutes effective practice, and several sets of guidance have been produced by different working groups in education and health which are very helpful, to parents and others, but these need to be complemented with evidence from robust research studies.”

The evidence base for good practice in transition between settings and stages of schooling needs strengthening, the report also reveals.

The new report will be relevant to practitioners, policymakers and families worldwide. It will be available on the NCSE Web site (http://www.ncse.ie) from today.

You see there is more to research than the bogus science too oft reported and debated in this corner of the blogosphere.

Congratulations to Ari Neeman BTW, we need someone who appreciates the social model of disability to counter the bull being spread by NIH in the USA.

Monday, December 14, 2009

Laurentius in Winter.

I don't know how many people are familiar with the "Lion in Winter".

It depicts the troubled relationship between HenryII, his wife and their rebellious sons.

Well sometimes Christmas back home was like Christmas chez Henry as depicted in the movie.

To be sure I have some distant memories of childhood Christmases, waiting for Santa to come down the chimney, Christmas trees with the same baubles year in year out, and wondering where they went. (The tree in a bin and the baubles back in a cardboard box in the loft kept well out of reach of childish hands)

It is however the later Christmases of adolescence and early adulthood I remember most though even though they were one long haze of alcoholic overindulgence and family squabbling, it is no exaggeration to say that knives were drawn on one occasion (just like in the movie)

And when my dad was no longer around my brother and I would fight it out instead. There was one occasion when we were all drunk, my mum included, and a fight broke out between me and my brother, fisticuffs, grappling that sort of thing. Now bear in mind my mum was disabled and used a wheelchair by this time. She managed to stand up and then toppled onto the floor, she was too drunk to remember that she couldn't walk. Well by that time my brother and I were also on the floor, and the three of us just fell about laughing, the whole thing was so absurd we forgot whatever it was we had just been fighting about.

Things changed however after my mum had become so disabled she could not cook anymore. I remember trying to cook a proper Christmas dinner under her supervision (she was a trained and qualified cook) but it was something of a disaster.

After that we decided (apart from a few Christmas decorations) that we would not celebrate Christmas in the traditional way anymore and would instead take a packed lunch out for a Christmas picnic somewhere away from it all.

From 1987 onwards that away from it all had become regularised into Lake Vyrnwy in Wales, and that is where I still go every Christmas, this year will be no exception.

In case you have forgotten watch this space.