This thing called Achalasia.

The Internet is indeed a wonderful and strange place where many odd things can be found and people connect with each other through shared interests all over the world. Indeed, when I was looking for scoliosis support I found 3 forums and more sites than I could possibly imagine. Some of the people I met online I felt so close to since they were going through the same as me and our shared experiences in turn helped us and others to get through a difficult time. This all brings me to now...

...now, I have been diagnosed with something else horrible. It has no cure and any treatment serves only to alleviate the symptoms. It affects me every day, every time I eat and most times when I drink but it’s not like suddenly discovering I have coeliac disease or diabetes where I have to change my diet. It doesn’t really matter what I try to eat –in theory I can tolerate any food I want – if only I could get it inside me!

So, I did a little digging on the internet and came up with some very good informative sites (like here, here and here,) but really very little in the way of support. Now I know that this is something that only affects 1 in 100,000 people, but there are a lot of people on the planet – so I was a bit surprised. Now, before all you achalasia support people out there get annoyed at me, I know that you are all posting on places like the Gastroenterology forums but then you have to sift through all sorts of other conditions (some of them quite ‘eew’ as well), before finding anyone else who is just the same as you.

So, without the support of hundreds of random people, I have had to make up my own mind and after all the testing (endoscopy, barium swallow and manometry – which shows I am a textbook case!) I have decided to go back under the knife. I just want to be able to eat and I hope that they can get me reasonably well fixed as soon as possible. All I have to do now is wait for a date to go in – it’s all rather a shame really – I had thought I’d left all my surgery behind me....

So, as you may be able to tell from my tone, I am finding this all rather depressing and I am just in a bit of a funk generally. Poor old hubby is bearing all this with great stoicism as usual and Clumsy is trying to help by dribbling in my ear when I am in bed. What do you think....should I go out and spend lots of money???

Acka...what???

I know I mentioned my swallowing thing before, but I have finally got a diagnosis. Apparently I have Achalasia (which I have been told is said Achalasia as in Aphid, not achalasia as in apple....!) anyway, I digress...

It basically means that the nerves supplying the lower part of my oesophagus have decided to pack it all up as a bad idea and my peristalsis just twitters occasionally (on a good day) without actually doing anything useful. Of more concern to me (and the main stuff of all my difficulties) is the fact that this nerve thing means that my stomach valve doesn’t open to let food into my tummy so it just kind of stacks up in my gullet until eventually it manages to squeeze its way through the tiny little hole left at the bottom.

I thought I’d post my x-ray (very odd eh?):
– my valve is the bit just below the level of those two screws and my problem started (in some kind of haphazard way) after my surgery happened. First I had occasional problems with toast and then it was bread, then meat and then gradually over time I found I was having some issues with every meal. Now...I had nerve damage through my surgery (remember the numb abdomen and the leg thing) so I asked my surgeon if it might be connected to my spine.

“...Um, no, I’m sure it isn’t”, he said – “but we don’t really know why this kind of thing happens...”

Now, I’ve heard that people who have broken their thoracic spine get a higher incidence of achalasia so I think they may indeed be connected. Having said that, in such litigious times, I think no doctor or surgeon would suggest that another’s work might lead to any kind of related medical complication just in case you decide to rush out and sue them!

For me, I’m not interested in litigation, I was simply curious. My spine surgeon once said to me that you can’t make an omelette without breaking eggs and I’m pretty glad to have been a pretty good omelette, rather than a box of broken eggs that would have to be thrown away.

Anyway, as I get more details, I’ll let you know more on the acka-what story later

Car Window 1 Finger 0

Did you know that modern cars have some kind of sensor on the electric windows so that you can’t use them to slice small children’s fingers off? I did! What I did not know was that my 25 year old car (which has electric windows) has no such sensor and safety cut out. With mine, you press the button and the window goes up, if you put a carrot in the way, it slices it in half (I am sure of this but have not yet gone to the trouble of wasting a carrot^*1). I know this because someone left a note under my windscreen wiper...

Now before you wonder what anyone was doing leaving me a note about my electric windows under the windscreen wiper, let me explain that the note had nothing to do with anything (apart from the fact that I had parked in a staff space without a badge, late at night when all the staff had gone home). I know it was naughty, but it seemed to me that at 9 pm outside a school there really wouldn’t be too many teachers around (sadly there was an overzealous caretaker, hence the note).

Anyway, that’s just dragging out the story so I will try and give you the short version! It went like this:

1. I got in my car before I saw the note
2. I started to drive across the car park
3. I then spotted the note
4. I wound down window to collect note
5. I had to lean a long way out to reach the note and ended up leaning on the ‘window close’ button with my other hand by mistake as I stretched to reach the note
   
6. At that point the window started to go up
7. I pulled arm into car - quickly - but caught a ring on my finger in top of window
8. My finger got trapped by the rising window which had no sensor to stop the rising glass when it encountered a foreign object (such as my finger)
   
9. In the dark and in a major panic I mashed all the buttons on my door - opening the windows on the far side of the car (very helpful...not!) in the process before finally getting the button to open my window.
   
10. Result, a very squashed ring and a pretty bruised finger....

Mmmmm – don’t try this one at home...


^*1I am waiting for the ones in the fridge to get past even soup making before I have a go.....

Enough with the tinkering....

So, I didn't like any of the templates but I don't know quite enough html to tinker with them....so, the only thing to do was to learn a bit more html!

The only problem with this is that you do a bit..then check to see if its all gone horribly wrong, find out that it hasn't, but its the wrong colour, change the colour and - guess what...yep, it all goes horribly wrong!

Anyway, in the end I am quite happy with the result - any complaints, let me know and I will take them all under advisement - I may even print out your comments and file them in the round filing cabinet under my desk along with the discarded sweet wrappers and stuff....

Proper blogging will resume in a day or so....

Coming along...

As you can see, there have been a few changes to the blog...I'm not happy with all of them but at least it seems to be working OK.

Rest assured, I will have another go at it and get it all sorted soon, but for now my back is starting to ache and I need a cuppa!

Housekeeping....

I have been quite aware for a while that some of the links on my blog no longer work. I'd like to do something about this but everytime I try to Blogger gives me rude messages suggesting I update my template. Now, all that is fine and dandy, but I like this one....and I like it even more because when I started blogging as far as I was concerned, html might have stood for 'Have ten more lattes'. PTV did his best to put me right, throwing a few snips my way and numerous links to 'teach yourself html' and 'so you think you can write a blog eh...dummy?' and in time I designed most of this page from the bottom up, complete with all those weird characters (which I can't show you here or my page will look all funny) and a few other bits which I still don't understand them as I just stole them from someone else's site!

So, I think the time has come for some kind of redesign ...and I shall save this one just in case it all goes t*ts up. I suspect though that Blogger might never let me get out of their namby pamby babying world of the new easier template. I am sure that they are like Microsoft, who feel that they know what is easy for you. It's that kind of easy that Vista now asks you several times (instead of just once) if you wish to install new software by asking whether you actually want to do it or if you are actually allowed to do so....well, duh, sorry.....even if I wasn't allowed to do it do you think I would click the button 'No, cancel this installation, I'm not allowed!'

Bring back the good old days when computers thought you knew what you were doing even when you didn't and we all had so much fun staring at a big blue screen an wondering what to do next!

Speaking of big blue screens, hubby's laptop went phut recently and I just bought a new hard drive, fixed it and reinstalled everything - no mean feat when hubby has lost the driver disc and I had no idea what components were installed. I only tell you this because I feel pleased with myself ....and also so you know that when I am offline for ages whilst designing my new template, that it is not because I am complete idiot...!

Purrfect Feline Behaviour

We have the best behaved cats in the world. I am absolutely sure of this now even though I have not always been convinced in the past.

A week or so ago we went away for a cottage holiday and took the cats with us. We also got to see PTV and HLW which was brilliant...it’s been too long! Anyway, the cats...

We had our week away and then put the cats in the basket to bring them home. Now, we are lucky, with our cats this is quite a simple process and goes something like this:

• Open basket
• Pick cat up off windowsill
• Put cat in basket (leave door of basket open ready for second cat)
• Pick cat up off windowsill
• Put second cat in basket
• Close door.

Now I know you’re all thinking that that’s all wrong and where’s the gauntlets, the shredded curtains and the claws embedded in the outside of the basket? Nope, that’s just the way it is with us and if you can believe it, it gets better...

On the way home (it’s about 4 hours) we stopped for a drink at the services and opened the basket for the cats to stretch their legs and also have a drink. After 20 minutes or so we came back to the car to find them both sitting up on the back seat. Now Grace (being the more nervy) then tried to make a break for ‘under the seat’ when we opened the door but this may have been because she wasn’t certain who was about to open the door. For all she knew it was some mad cat-napper who was going to steal her away and cut her ear off to prove that it really was her whilst asking for a huge ransom (she has quite an imagination - my cat!). Anyway, as soon as she realised it was us she resumed her post on the seat and we got in.

It was at that point that Clumsy climbed in to the basket completely unbidden and Grace followed him. I swear they would have shut the door behind themselves if only they could have reached the latch....!

Not naming and shaming

I decided it was time to upgrade my trusty camera. I’ve had it about 5 years and 3 mega pixel is getting a bit passé now – besides which, its already been repaired once and sees an awful lot of use and abuse so I have no idea how long it will last. Of course, the real reason is that I saw my dream camera online and it was in my price bracket, so I was just looking for any kind of excuse so that I could justify it to myself!

Having made the decision, I went online, only to discover that the link to the page with the best deal didn’t work so I thought I’d phone the company in question and do it the old fashioned way and order over the phone. I spoke to a very nice man (a very very nice man^*1) who told me that the new range is due out in November, so my dream camera was now a discontinued, out of stock model and there were no new stocks available from Canon. He advised me to buy one now as the replacement did not have the same features and he also advised me to do it soon as lots of people were trying to get them before stocks ran out altogether!

Thus ensued the usual thing of web searching and price comparison sites until I had narrowed it down to a best price but no stock levels shown, so, heart in mouth, I phoned them. Yes, the lady said, we have 2 here in stock but please can you order online, it’ll be easier for us. My fingers flew over the keyboard as I spoke to her....it was to be mine....mine..!

That was Friday. Monday, I had an e-mail saying that they couldn’t fulfil my order as they were out of stock! So, in best seething fashion I phoned them and squeaked my story down the phone.

“Ah” the lady said, “we had 4 orders over the weekend and only 2 cameras are in stock”.
“Grrrrr” I said (only much more politely), “I ordered mine Friday and I bet my name came first alphabetically too AND I was on the phone to you checking stock levels while I was ordering!”
“Oh” said the lady (very quietly), “let me see what I can do” (there is the sound of whispering in the background from her end). “Um, let me see”, she said, “We could cancel one of the later orders and give you the camera, how does that sound?”

Now, that’s a result.

....oh yes, and my camera arrived the very next day and is everything I dreamed of so I am content....

^*1 See here

Oh no – I can’t move my leg!

So, a little while ago hubby took me to the cinema (I can’t remember now what it was to see but we have had a superhero glut with Iron Man, Incredible Hulk ^*1and Hellboy 2....and we love all that fun stuff!). Anyway, we went to the cinema, did the usual – hubby bought exorbitantly overpriced popcorn and I went for the strangest Ben and Jerry’s combinations I could find (Cherry Garcia with Chunky Monkey anyone?). We headed into the auditorium and sat down, all excited like and that’s when the trouble started.

“I can’t move my leg” I whispered to hubby....

Well, that’s not completely unknown in my world of wonky wiring so I gave hubby my ice cream and started tugging on my jeans...

“I really can’t move my leg!” I squeaked (feeling a little alarmed that it had maybe gone into some kind of spasm and was locked in place)...

Hubby gives me the drink, popcorn, ice cream, his coat and the ticket stubs for me to juggle while he gets down on the floor and grabs my leg....

“OMG!” He says “I can’t move your leg either!”......then.....”Oh, you dope, you’ve got your leg brace trapped under the seat!”

Turns out that when I had sat down on the flip down seat, the back of my leg brace had got trapped under the folded down seat (being exactly the length from the floor to the underside of the seat) and just wedged me in.....all I had to do was stand up and lo and behold, my leg started working again!

^{*1 Marvel have been very busy over the last few years}

More tales of choking

Now reading the last heading, I’m sure friends of mine nodded sagely as if they were sure what was coming and then were completely confused. You see, I have been choking a lot while eating for a while now...well, not exactly choking, more a kind of eyeball popping effort to get my dinner down as food seems to be getting stuck in my gullet. I’ve had the camera down the throat thing (yum yum...not!) and it showed, well, nothing actually, and now I am waiting for more tests. I can’t eat my dinner properly and the NHS tell me that I should be seen in around 5 months time. This means a visit to the BUPA hospital as I just can't stand waiting that long....mind, don't forget, we do have the best National Health System in the world.....don't we?

Anyway, I have had various suggestions from people as to what the problem might be and while they all sound plausible, there’s no answer yet. Someone even suggested that I have a screw loose and it’s poking in the wrong direction – I do hope not as it would be a long way off target! It is interesting though as this problem started after my surgery and has gradually got worse over time. So, watch this space, maybe I will make medical history yet....

Warning – this food may cause you to choke

So, it was Friday so the FNG was coming round (unsurprisingly) and he loves curry so I decided to cook a Kashmiri Marsala. I read the jar and duly started spooning in the required quantity to the pan – so far so good! That didn’t last long though as within minutes we all started coughing - hubby and the FNG deserted me and I soldiered on, trying to lean out the window as I stirred. I wouldn’t mind if I had started to burn the food or that annoying little bit of something had stuck to the underside of the pan and was merrily sizzling just where I couldn’t see it....oh no, nothing simple like that, it was just the mixture of spices in this particular curry that really caught you in the back of the throat when you heated them (as if you were likely not to heat them, making a curry!)

Anyway, I carried on cooking and eventually we sat down to eat. It was at that point I decided to throw out the rest of the jar! Now don’t get me wrong, it was fine to eat, but, As I said to the FNG, it’s just not so good that it’s worth asphyxiating myself during cooking again!

So, here I am....

So, here I am, home again. Back to normality and news. Hubby has been a treasure while I’ve been away and I came back to well fed cats and a clean house – I have no idea what it all looked like 24 hours before I came home but when I came home it all looked fab....well, apart from the hole in the hall ceiling that is....

...now I hasten to add here that I don’t think hubby was doing somersaults on the landing or using a pogo stick over enthusiastically in the hall to ruin the ceiling, I think we had what is known in the trade as “sudden ceiling collapse”! I’m sure when we bought our house (which was built in 1896), our surveyor said something like “your ceilings are original and they might fall down at any moment” but in true it’ll be fine ^*1 fashion, I chose to ignore it. Now, before I went away, the BUF and her VNSO came to visit and we were discussing the crack in the ceiling which seemed to be growing day by day and I did mean to get in touch with the plasterer but, um, well, you know how it is....

Anyway, as to how sudden it was, we are really not quite sure as poor hubby went away for the weekend and came home to a pile of rubble on the carpet. The only witnesses were Clumsy and Grace and they’re saying nothing. Me, I suspect that they had one of those thunder up and down the stairs moments and the whole lot collapsed, but they’re not owning up to anything!

My only other news on my return was that Hubby had not only found a new job, but had actually started work too. I don’t think it’s exactly what he would have chosen, but it pays much better than the dole so he’ll stick it out for a bit.

Normality seems to be returning.....

^*1I say this a lot

The problem of having your leg attached to your body...

A few days ago, I was told that the bathroom floor in our apartment was lethal when wet, so I decided to be very safe and take my wheelchair into the bathroom to sit on to get dressed. I had a lovely shower, and perched on the edge of my chair to dry myself as planned and everything was hunky dory. The problem started when I raised one leg to put my trousers on and the other leg just started sliding across the floor in a way that perfectly imitated Bambi on ice...

So....my backside hit the ground with a thump, and I said ooof (or something like that!) and E2O starts banging on the door. "Are you ok in there?" she yells, "Can I come in?". Long story short (which involves keys and all sorts because I'd locked the door) and she sees me sitting on the floor in a state of shock with tears in my eyes

"OMG!" she exclaimed, "Are you all right?"
"My leg slid away from me, and a landed in a puddle and now my knickers are all wet" I bleated.
E2O burst out laughing^*1 - "Well, that's the problem you get" she said, "when your legs are inconveniently attached to your body!"

I can always reply on her for support and sympathy in a time of crisis as you can see - although this time I am at least grateful she didn't get her camera and take a photo!

At least it was not a painful experience - merely an undignified one....


^*1 Turns out she was so worried I had hurt myself that she thought it was really funny that I was more concerned about my wet clothes than how bruised I was. She later admitted that she had once fallen and cut her head open and was more concerned that she had ruined her shirt than the fact that there was blood pouring out of her. It's amazing how the brain works sometimes!

Eek, it's poison ....

...maybe it was orange???

Anyway, a few days ago we had to go to the Ambassador's for a reception in a marquee in the garden. This marquee had very posh carpets and chandaliers but I'm guessing it still qualifies as a marqueee as I think the sides may have once been some kind of reinforced material....before the wallpapaer was applied (actually I am joking about the wallpaper!). Anyway, it was very nice, with free flowing drinks and lots of people wandering around with little trays of canapes.

The following morning P of O * didn't feel very well. She had a bit of Beijing belly and after a while came over grumbling;

"I dunno", she said, " Come all this way to China, just to be poisoned by your own Embassy!"

Poor thing, but it didn't half tickle me!

*Phantom of Opera or Physio of Our-flat whichever you prefer....
BTW, she is better now....

A sidenote on amputation

Perhaps this is non pc of me, but I have become fascinated by prosthetic legs. People around here all wear shorts and show off their 'legs' proudly. There is such an assortment, from those that loook like human skin to those unusual looking 'blade runners'. In between is an enormous range from those that look like a metal broomstick with a shoe or (slightly more odd ) bare foot on the end to those that woudldn't look out of place on the set of the next Terminator movie - all hydraulics and shiny steel. The people who use them almost without exception walk so fluidly that the limb looks every much a part of them as their own skin and bone. I know that is true from conversation, but its another thing to be able to sense, feel and see that for yourself.

On caterpillars...

So, life in the Olympic village continues smoothly although that is perhaps not the word that some people would use when looking at the number of limpers and lurchers around the place. Progress is not always smooth in such cases...not that I can talk of course, having been a limper and lurcher all my life! In fact my smooth progress these days is only down to the chair, which has been a huge help in enabling me to cover the long distances required around here.

Today, I saw a caterpillar of people wend their way down the road, each with their hand on the shoulder of the guy in front - the guy in front had a white stick which he ran along the pavement. This really was a case of the blind leading the blind! I cannot get over the level of trust that they must have in each other - it really is amazing! I do wonder though what happens if the 5th guy in line loses touch with the guy in front of him. Do they get lost or do they just whip out their own white stick and become the leader of another caterpillar?

Of course, this kind of thing happens all the time with large groups of wheelchairs where people who get tired grab onto the handles of the guy in front. Not such a bad thing to collect 16 wheelchairs behind you if you are in an electric chair (need a big motor though) but not so much fun at all if you are in a manual chair and are are the person at the front. You sit there pushing away and the chair gets a little heavier as one person gets on, then another and its a bit tougher , then another and you start to feel like you're going uphill. 16 people later and there is much mirth and merriment behind you as you start to feel like you are pushing your way through deep (very, very deep) wet cement.....and then your arms drop off!

What an Amazing Start....

The Paralympic Games started yesterday and I was lucky enough to be in the Birds nest stadium to see it all get kicked off. The atmosphere was amazing...I really did have goosebumps on my goosebumps!

More great stuff on this can be found here...they can do this stuff justice so much better than I can!

A change of name emerges....

EO is now E2O as it was her birthday yesterday. She got another Eeyore to add to the collection so that’s it. We have discussed the new name and she is happy! I did think of calling her E2TSSO, as she also had a teddy, sheep and snake, but that seemed a little extreme....and before you all start wondering why a grown woman should be getting such a menagerie for her birthday, I should add that they were largely good luck charms for her trip!

I am now settled in and unpacked having travelled halfway across the world for a 2 day stop and then on to China. All is well in the world and the sun is shining – so far there isn’t even too much smog! Considering I am here for what could be a pretty stressful time, I am actually pretty unstressed and enjoying myself...although there’s always time for that to change.

Yesterday I had one of those silly moments where a photo was taken that I will probably regret forever and will be face-booked around the world if I am really unlucky. I was trying on one of those silly hats (the ones like a giant top hat with bells and lawd knows what attached) and discovered that trying to fit it on my rather small head (I normally wear children’s caps etc) was indeed a foolish notion. I put it on, resting on top of my glasses, then took them off to clean them and the hat slid right down over my nose, over my chin and only stopped when it reached my shoulders. To add insult to injury, the top of the hat was then dressed with a wig and I was forced to have my picture taken (if I get a copy maybe i can post it) ....by multiple people. All this in 30 degree heat – I was only allowed to take it off when I made sounds of asphyxiating woman from under the hat! Egads, I have some cruel friends....!

So that's it for a while?

So, that's it for a bit I think as I fly off to China tomorrow for three weeks. It will be a very interesting time I think and I am very much looking forward to it.

Of course, I am also concerned about leaving hubby for the same amount of time ...and Grace and Clumsy too! I hope they will remember to feed him and don't trip him up at the top of the stairs...

Anyway, the freezer is full of ready meals and I have left instructions on what to do in almost any situation (barring such unusual items as preparing a three course meal for the mayor and his wife, in which case more ready meals will have to suffice!) This trip will also be odder than normal as this time he isn't working so will have many daily hours to fill (I was hopefully thinking of housework when I first wrote this, but I am a pragmatist, so won't hold my breath...). I have also left instructions with the BUF and various other folks to keep an eye on him - you know who you are - be warned, I will be giving you marks out of ten on my return!!

I suspect I will come home to a completed xbox game and a recently (probably very recently) hoovered carpet and a couple of happy looking kitties who have been spoiled rotten in the absence of their mum.

In any case I can't do too much about it from the other side of the world so will just have to concentrate on me this time......

Oh yes... I am taking a computer away with me so I may yet update this ...that's if I'm not too busy answering my hundreds of e-mails (hint hint...)

Without wit here

I have been trying to think of some nice witty story for you all, but so far nothing has really come to me. It’s not that life is going badly, quite the contrary, but just nothing really funny has happened to report on. Life generally is pretty ok at the moment – a little fly in the ointment when hubby was made redundant but he’s getting interviews so we are hopeful for a new job soon. His employers were, of course, perfectly reasonable about the redundancy, giving plenty of warning etc. It went like this:

• Thursday (out of the blue): “We’re putting 3 of you ‘at risk’ – one of you will go!”
• Note, one of these people has loads more experience than the other two so was never an option ...they should have said 50% of you will go...
• Wednesday (following, one year to the day that he joined the company): “you’re the one going...”
• Friday: Receives final wage slip...on his birthday....

Life just isn’t fair sometimes eh?

Apart from that though, as I said, life is pretty good, but I have been very busy. I have spent the last few days packing, unpacking and then packing again as I am away on a trip again soon (more in a few days on that) and despite the fact that I know what I should be taking I keep checking my lists, noting that I’ve packed whatever it is, but then rooting around in the bag until I find it ‘just to be sure', and then having to re-pack because I’ve made a mess. Then of course I started sorting out cables. OMG, what’s all that about? I need the cable for the phone, the cable for the camera, the cable for my iPod, the cable to connect the modem to the wall, the cable to ...well you get the idea! Of course, most of these things will charge off the laptop, but then I need the power cable for the laptop too...And, in addition to all that, I currently have 5 different lists in 4 different rooms and still don’t know if I have everything I need or if it will all go in. I think I will get back to you when I am a little less frazzled by it all....