The aging spina bifida population

I was wondering the other day (well, it is what my blog is about) and it occurred to me that for the first time in history we have a relatively large number of people who are getting older who have spina bifida. I know that if you were born before the 60’s, the kinds of operations that they did to put spina bifida right were a bit hit and miss (if indeed surgery was an option). I have a friend 10 years older than me and all they did with him was stitch up the lesion on his back and keep their fingers crossed – he ended up paralysed, but most people older than him just simply didn’t live much past teenage years. Now I’m not saying that people didn’t survive, because a minority did, but now, with modern surgical techniques, you wouldn’t expect a spina bifida baby to have any less chance of survival than anybody else.

So, what am I trying to get at here? Well, babies in the 1960’s are now adults in their 40’s. They are about the oldest people alive who had surgery with the more modern technique (although the 60’s was still a bit experimental shall we say...!) and there’s no frame of reference as to what happens to these people as no one has (boldly) gone where they are going.

Take me as an example, I have scoliosis – that’s pretty common in spina bifida people – of course your spine has a weakness to start with so you might expect it. You might expect other neurological things too and they might deteriorate with age as things change for everyone as they get older. What about my achalasia? They say that is caused by the nerves to my oesophagus dying off. That’s neurological...is that to do with my spina bifida? Is it that nerves from my spine have wrecked my swallowing? Who can answer that, as we are all aging at the same rate and we are the trail blazers. Imagine that?

The odd thing is, that you might feel that it would be an idea to document all of this that is going on with my body and all those other people who are my age with spina bifida. “Document it”, I hear you cry (I did, I really did hear that) but you see, there’s really very little point...by the time the 70’s had come round the spina bifida operation was hugely improved. Babies didn’t have to wait until they were 3, 4 or 5 months old to have surgery; they were operated on the day they were born. By the 80’s nutrition had improved to the point where spina bifida was becoming rarer and in the 1990’s they started adding folic acid to bread and all sorts of things which reduced numbers even further. Now, it’s so much rarer – in 60 years time, there will hardly be any spina bifida population at all. Spina bifida will eventually become something only in history books (with any luck) and there won’t be any cases to pass knowledge on for.

It means that for a number of people born in the 1950’s, 60’s and 70’s, they will be a small population of aging spina bifida babies who will all grow old together (well, we all hope we will anyway), and will face unknown trails along the way but whose experience will be of no use to future generations. There’s an odd thing, isn’t it?

Spontaneous Transplantation?

I do hope this post doesn’t gross you all out, but you see today I found a hair on my chest!

Now, I do have a theory (all that wondering does that) and that’s that it may have been a case of spontaneous transplantation. You see, as many of you know, I use an epilator – under my arms! I do that because I am “hard” – or possibly because I am “a real man” ^*1, or maybe just because I like the results, but regardless, it involved plucking your hair out by the roots – and lots of them at a time. Inevitably some of them fall downwards (that’s gravity that is) and I fear that one of them may have dropped into my bra. Being recently plucked (and therefore still ‘alive’) and in the warm and cosy environment of my bra I fear it may have spontaneously transplanted itself into my chest. Now, I don’t know too much about the subject (maybe I should ask Elton John?) but it seems feasible. So, what of this stray hair? Well, it’s gone, plucked and gone and there’d better be no more where that came from!

Of course, there is another theory, and that’s that it got lost from the great internal hair ball and took a wrong turning. I of course know that there is a great internal hair ball (and not from living with cats!) but from observing men. You see many men are basically lazy (not hubby of course) and the older they get the lazier they get. Assuming that the old adage of lazy mind, lazy body stands, then they will also have lazy hair ball and hair won’t want to do all that struggling upwards to get to the top of the head, oh no, it’d much rather take an easy route out through the ears or nose or just push its way out through the chest somewhere close. This is of course why men go bald on top but get hairier and hairier in odder and odder places as they get older...

Now, I want to make it clear – I am not a) a man or b) lazy and as to the hair, well, you decide...

^*1I was famously called this by a friend when I once decided to smack myself in the mouth with a lump of metal and then didn’t cry.....!

Sorry.....

So sorry, but these cracked me up.....


1. If you take an Oriental person and spin him around several times, does he become disoriented?
2. If people from Poland are called Poles, why aren't people from Holland called Holes?
3. Do infants enjoy infancy as much as adults enjoy adultery?
4. If a pig loses its voice, is it disgruntled?
5. If love is blind, why is lingerie so popular?
6. Why is the man who invests all your money called a broker?
7. When cheese gets its picture taken, what does it say?
8. Why is a person who plays the piano called a pianist but a person who drives a racing car not called a racist?
9. Why are a wise man and a wise guy opposites?
10. Why do overlook and oversee mean opposite things?
11. Why isn't the number 11 pronounced onety one?
12. 'I am' is reportedly the shortest sentence in the English language. Could it be that 'I do' is the longest sentence?
13. If lawyers are disbarred and clergymen defrocked, doesn't it follow that electricians can be delighted, musicians denoted, cowboys deranged, models deposed, tree surgeons debarked, and dry cleaners depressed?
14. What hair colour do they put on the driver' licences of bald men?
15. I thought about how mothers feed their babies with tiny little spoons and forks so I wondered if Chinese mothers use toothpicks?
16. Why do they put pictures of criminals up in the Post Office? What are we supposed to do, write to them?
Why don't they just put their pictures on the postage stamps so the postmen can look for them while they deliver the post?
17. You never really learn to swear until you learn to drive.
18. No one ever says, 'It's only a game' when their team is winning.
19. Ever wonder about those people who spend two pound a piece on those little bottles of Evian water?
Try spelling Evian backwards:
20. Isn't making a smoking section in a restaurant like making a peeing section in a swimming pool?
22. If 4 out of 5 people SUFFER from diarrhoea, does that mean that 1 enjoys it?
23. Why if you send something by road it is called a shipment, but when you send it by sea it is called cargo?
24. If a convenience store is open 24 hours a day, 7 days a week, 365 days a year, why are there locks on the door?

Reader involvement

A while ago, I added some little boxes to go at the end of each post so people can tell me if they like the post. Dunno what subjects the boxes should be tho’ so any opinions would be appreciated...be nice to see them used too....

Also, I was wondering the other day - if quitters never win, and winners never quit, than who is the fool who said, "Quit while you're ahead"?

Tesco photo shop 1 WH Smith 0 – Naming and Shaming – Oh yes!

So, I ordered a photo book from the Tesco photoshop and it duly arrived. I was delighted with the inside, but the cover? Well, it was like Hotblack Desiato’s Disaster Areas’s ship^*1, – all black buttons on a black background when it came to the title. OK, so maybe that’s an exaggeration, but it was black printing on a dark surface and hard to read so I e-mailed to complain. I received an e-mail from a very nice lady who asked me to return it (freepost) and she said she’d look into it. After a week or so she mailed to say that they would replace it with another cover of my choice and gave me simple and clear instructions on how to upload my new choice without paying for it. So...well done Tesco!

By contrast, I ordered 2 books for Christmas from WH Smith – both hardback copies. When they arrived they had sent me one hardback and one paperback. I emailed and got an automated response that said they would reply personally in 48 hours...but they didn’t. I emailed again and got exactly the same response (i.e. none). I phoned and after 20 minutes of ‘you are in a queue’ they cut me off. I emailed again and yet again I have had no response.

So I was wondering - what is the use of a company who is completely unreachable in the event of you having a query?

Eventually I phoned again and spoke to an 'oik' who told me that the catalogue was wrong and that the book was in fact only available in paperback so that’s what they had sent me. He said that if I wished I could return it (at my own expense of course). I got no apology and it probably cost me £5.00 in phone calls to get this information.

I will never ever order anything else from WH Smith online again and no, I don’t care that I am telling the whole world how dreadful they are....

^*1 If you don’t know who this is, you really should...!

The Park

We live opposite a park and I really love it. The funny thing is that i don’t really go into the park that often, but I still love it...and I found out from the lady that we bought the house from that she felt the same way. She told me that when she put the house on the market, she had spoken to her sister about it and her sister had suggested that since she never actually walked in it, she wouldn’t miss it all. She assured me that she would miss it, and over time I have really got to understand what she meant.

One of the great things about living opposite the park is that it means that you’re not actually opposite other houses – in fact, all that’s on the opposite side of the road to our house, are trees... I have become acutely aware of the passing of the seasons as those trees unfurl their leaves in spring and shed them in the autumn. They are home to birds and squirrels in the summer and glisten with frost in the winter. Some days the trees cast ghostly shadows through the mist and there is always some sound of nature to be heard in between the hum of cars from the main road down the hill.

Last week, just for a change, I decided to take a walk in the park and was lucky enough to spot a squirrel popping its head out of hibernation as I passed small clumps of snowdrops nodding prettily in a gentle breeze. The crocuses were just starting to show some signs of colour and there were thousands of daffodils standing in tall green spikes ready to open in time for St David’s day. It was beautiful, the traffic noise seemed to be absorbed by the green of it all and it was lovely to just take a moment to chill out in green surroundings.

So, you don’t need to go into the park at all, but it’s nice to do. I decided to tell you all, just to remind myself of how nice it is and maybe to reinforce that feeling so that I get to do it more often. In this mad manic world, its special to find a little time and space to relax in....

All a bad dream?

I had a cheese sandwich...yes, I did! That means that for the first time in about 10 months, I had a slice of bread that wasn’t toasted and then dunked in coffee to make it pliable enough to get down me. It was simply a slice of bread, a bit of butter and some cheese and I just ate it without any real problems at all. It makes me wonder if the memory of my achalasia is really nothing more than the heading suggests – just a bad dream!

Of course, the sandwich was different to eat than before I really started to have problems with my swallow. I used to bite, chew, swallow, bite, chew, swallow, bite, chew, swallow until it was all gone but this was more like bite, chew, swallow .............bite ...... chew ................ swallow .................... bite ........... chew ................ swallow until it was gone – so altogether a slower process. Hubby likened it to only allowing one man on the rope bridge at a time...no peristalsis means that you simply have to let gravity get your food down for you and some things are more influenced by gravity than others. I never thought I’d be wondering what to choose off a menu based on how heavy it was but I can definitely state that lettuce is so light that it doesn’t seem to go anywhere at all!

All the same, this seems to me like a return to some kind of normality and I am starting to find it hard to remember struggling to eat in the way that I was. Long may it continue!

I'm still dreaming of pizza BTW...I have £15 in my purse and I'm waiting for Saturday!

Happy birthday metalwork!

Actually, that’s a fib...it’s not my metalwork’s birthday, but in the midst of learning how to eat again and getting over my latest surgery the birthday thing just slid by. All the same, better late than never, so here is my report on what Its like to be 3 years on from having a major scoliosis correction operation.

I really don’t know where to start....except to say the most important thing of all....my spine has got no more crooked over the last 3 years. Now, that may not seem unexpected (or even exciting), but all those times I stop to think about it, I realise what a scary place I would have been in had I not gone under the knife. Breathing and eating, all of those things we take for granted would really be an issue the longer it went on for. At the time of my surgery decision, I was told ‘10 years to major organ failure’ and I didn’t really get it...but now I do, especially since it’s just not on my radar any longer. I am truly a lucky person and one who has been given a fresh lease on life. I will never be able to express that adequately....

Now to the nitty gritty... and the bad bits. I have discovered that scoliosis surgery is no cure for pain and that when you are rigid inside you often wake up in the morning completely rigid on the outside. Turning in bed some mornings is painful and awkward but usually wears off pretty quick once I apply some WD-40 (joking) and once I just get moving! Painkillers work fine and I don’t need to worry too much about it – like all people with pain, I get tired and crotchety from time to time, but actually I think it’s a very small price to pay for all that breathing and stuff.

I came out of surgery with some numbness and nerve pain in my leg. Neither has really gone. I still have to take the gabapentin (but a teeny dose compared to what I was taking) and there are compensations to numb bits...I mean, when Bugalugs tries to climb up my leg, it doesn’t bother me in the least! Having half your tummy numb and half not is kinda fun and an endless source of entertainment in working out where the edges are....and more practically, when I had my recent surgery, my consultant poked me (none too gently) in the stomach – “Does this hurt?” he asked and I was cheerfully able to tell him that it didn’t hurt a bit!

My walking is fine by my standards. I still only have 2 speeds, dead slow and full stop, but I am able to get into Tesco’s and buy milk and suchlike. For all longer distances I have my wheelchair and that gives me an incredible amount of freedom and independence. I can whizz round places, taking unnecessary detours all I like...its brilliant!

So, there you go, I guess it’s not so different from 6 months or even a year ago. Now I am eating from my achalasia surgery and feel so much healthier generally I feel pretty great. I know that I will always have limitations in my life, but so much of that is due to my spina bifida and I was an incredibly lucky spina bifida baby with the way I learned to walk and all. I just think that I am a very lucky person generally – isn’t my body an amazing machine? – and not just because it’s stuffed full of metal either!

No cats were harmed in the production of the last blog entry....

Ooops....

What do you get when your cat knocks your glasses off the bedside table in the middle of the night and your husband steps on them in the morning? This, that's what....

I don't think he could have broken them any more comprehensibly if he'd tried!

The good news is that I have spares and he had shoes on...so at least no one was hurt...!

Bravery and burglary!

Whilst I was off enjoying my stay in hospital (joking!) hubby called me up on my mobile:

“Now, I don’t want you to worry about a thing, there’s nothing to panic about”...
...of course, this immediately starts alarm bells ringing and I immediately want to panic...

He goes on to tell me that while he was visiting me in hospital the night before, someone had tried to break into the house and he came home to find the kitchen window wide open (having been forced from the outside) and Clumsy was at that point missing. Now Clumsy and Grace are both house cats, so it has been assumed that the burglars tried to get in and Clumsy went into guard dog(cat) mode and was at them teeth and nails and they ran away. He is getting all the credit for this even though the security light on the landing inside may have also had a part to play. Anyway, the good news is that they didn’t actually get in, nothing was taken and all we are left with is damage. Clumsy came home looking very smug and has said nothing about where he buried the bodies....

It seems that they first got into the shed...now there’s another tale, as we had a garage broken into in our last house and they simply levered the padlock hasp off the door. Oh yes, the police told us, very common, those locks give easy, now what you do, is drill holes in the door and put washers on the inside so they can’t easily lever the lock. (And then he said Evening all and disappeared!) Well, it’s true, it works, the lock didn’t give so they just smashed the door down instead!

They took nothing from the shed apart from two left handed gardening gloves – (presumably to match the two right handed ones that they nicked from down the road??) and I fell to wondering about this area and gloves. What is it? Do all the burglars around here have cold fingers? When my car was broken into they stole some purple fluffy gloves and I have really little hands too. So they now have a pair of tiny purple fluffy gloves and one tiny left handed gardening glove (mine) and one large left handed gents gardening glove (hubby’s)...so I’m starting to wonder if we have a band of kleptomaniac amputees around here...?

Private versus NHS

I don’t think I mentioned before, that through some quirk of fate, I currently have BUPA cover and so was able to get my operation done privately (and therefore faster). I can now confidently report that in private hospital you get your own room (very nice) and an en suite bathroom (also very nice). The downside is that the loo paper was very cheap and in an effort to look as much like a hotel and as little like a hospital as possible; there were no handrails in the bathroom. Interesting, given that people are having surgery there...

On the subject of the staff, I don’t know what to say. In the NHS, in my experience, you have an incredibly dedicated nursing staff who are, more often than not, rushed off their feet. In amongst all of this, most of them try and make you as comfortable as possible and do the best they can (especially given how many people they usually have to cope with at once). Of course, access to them is often fairly quick too, as you are in a ward with other people, if the nurses don’t answer your buzzer, 3 other people will press theirs too and there’s usually someone fit enough to toddle out of bed and get help in an emergency. Private’s not like that - you’re in your own room and there are more staff. It means they have more time to spend with patients and so they do. This means they’re not out there in the corridor spotting who’s little red light is on and needing help. Friendliness and helpfulness first class...access to them? A bit hit and miss, it seems...

I guess when it all comes down to it, apart from the single room thing, the main difference is the food and I missed out on most of that. Having been checked in at 9.30 and on my way to theatre at 11am (out about 3pm if you’re interested in such things) and then nil by mouth or water only for the next 36 hours I only got one day of the food and then it was the famous ‘sloopy’ stuff. It was beautifully presented though on lovely china and with plate covers to keep it warm and all. Very nice food too...

The question is, given that there are pluses and minuses to the NHS and private, would you pay out all that money, just for good food? I don’t know that I would – the thing to my mind that you pay for is no waiting list and quick treatment at a time convenient to you. At the end of the day, if you are having surgery it’s all the same, they chop you open, you wish for pain relief and then you start to get better and get home as fast as you can!

Fun, fun, fun–doplication.

I have had a fundoplication as well as a heller myotomy and find it hard to believe how many new long words this has made me learn in the past few weeks! Anyway, the idea of this fun-thingie is to stop reflux. Now, as I am sure you are all aware by now, my achalasia has meant that my stomach valve was shut so I guess you want to know why I need reflux preventing surgery – no, you don’t want to know? Tough, I’m gonna tell you anyway!

You see, the heller myotomy splits the outer wall of the oesophagus to open up the valve. The oesophagus is something like a bicycle wheel (but without being circular obviously) – in that it is made of something like an inner tube and outer tyre - and in the myotomy, the outer tyre is split lengthways to allow the inner tube to relax outwards. The only problem with this is that once healed in this relaxed state, the valve never shuts again and so food goes in easily, but acid can come out just as easily. Result – swap achalasia for GERD in one easy session.

In order to prevent this they do the ‘fun’ thing which basically involves taking part of your stomach and wrapping it around the bottom of your oesophagus in a sort of knot and stitching it there. When your stomach contracts to throw acid up your gullet, it contacts the knot and effectively tightens it, (hopefully) preventing acid reflux. Isn’t that clever? Well, I thought so, so that’s why I’m telling you...

Of course, if they stitch the knot too tight, then you may as well continue to have achalasia, too loose and it won’t work, so here’s where I hope that my surgeon is really good and has it just right. So far, I can’t tell for sure, I have had heartburn like pains some nights since I had the surgery (but not all by any means) and of course, I’m not fully healed yet so that’s to be expected. I guess I’ll just report back in a couple of months and let you know just how clever my surgeon really is....

Gastric gurgling and gnomes

My stomach has been making odd noises since I started eating again and it made me realise just how quiet it’s been over the past year. I guess that with my LES closed, all the food in my oesophagus was just dripping into it slowly over a period of hours after I ate and so it simply never filled up and never had too much to work on or to make a noise about. On a similar note, I also find it virtually impossible to remember when I last that full feeling in my stomach after eating a meal before my surgery – although just the smallest bowl of soup when I first started eating and I felt incredibly bloated. One of the nurses told me that it was almost as if I had had a self imposed gastric band in place and after so long, my stomach had probably shrunk. I guess such things will all take time ...

I mentioned to my surgeon how odd my stomach felt and he looked very concerned. Maybe odd was the wrong word to use...as I just meant different to what I have been used to more recently..not odd as in bad!

Odd may be a bit of a good description for my surgeon too. I mean, he is very sweet and (I hope) good at his job, but he is just so gnome-like to look at.^*1
Give him a long beard and a little fishing rod and he would look right at home on the edge of any garden pond. He would be a natural extra for LOTR^*2 or any other great fantasy film and I can’t help feeling that he would be perfect in any live role playing situation with just a minimum of make up!

^*1 This is about 10 minutes long...but worth sticking at....?
^*2 Yes...I know there are no gnomes in LOTR, but I couldn’t think of any other amazing epic fantasy film ...suggestions on a postcard please...

Who ya gonna call?

In hospital I had a little issue with my blood pressure. Now this shouldn’t be exactly unexpected, as my blood pressure is quite low to start with, but it did concern the nursing staff and they didn’t seem to understand why I could be laughing and joking when my BP was 58 over 40, instead of just being unconscious....

Their response to me being under-pressured, was to attach me to bags of fluid and start pumping them into my arm as fast as they could and gradually my blood pressure went up to what I considered to be normal. Nurse and doctor came round and checked the chart and tut-tutted a bit –“ let’s give her one more bag of fluid overnight”, said the doctor, “and see if we can’t get it right”.

Morning follows night and the nurse comes round. My blood pressure is 122 over 70! “Ah, perfect” says the nurse, “that’s exactly what it should be”

“That’s all very well”, says I, “but why does my arm now look like it belongs to the Stay Puft Marshmallow man?”



You will be pleased to note that after visiting the toilet every two hours for the next few days, I returned to normal size and presumably ‘normal’ blood pressure!

Trapped wind...no not that kind!

My Heller Myotomy was done with keyhole surgery – 5 incisions as I mentioned earlier and the anaesthetist explained to me that they would inflate my abdomen with gas (he didn’t say what kind but I didn’t wake up laughing so I’m guessing it wasn’t Nitrous oxide). Anyway, he told me that after the op some of it would remain inside me and would dissipate over the next few days but that it might get very painful in my shoulders once I started moving around as apparently it percolates upwards through the body until the muscles absorb it, process it and get rid of it. If you are flabby and have little muscles, this is a quick process, however, if you are like me and work out with JTG (Joe the Gym) and have dense muscles it takes longer. I dunno, I thought all this trying to keep fit lark was supposed to be good for you!

Anyway, just be warned, if you are faced with this aspect of keyhole surgery...it hurts...yes, worse than someone poking 5 holes in you!...

...and that’s another thing...after the op I asked the surgeon how it had gone:
“Ah,” he said, “Things weren’t quite where we expected them to be – because of the shape of your back” (no sh*t Sherlock!), “and we found that you were very muscular when trying to make the incisions”

Ooh, I thought, that’s good, my physio will be pleased, she’s had me doing core strength exercises for a long time, as soon as I was allowed after my scoliosis surgery (which believe it or not wasn’t until 12 months after!)...and then I thought – Drat! All that work and now he’s poked holes in it, I’ll have to start all over again!

I was a bit proud though...an old bird like me having a muscular stomach....you don’t get told that every day!

I’m home!

So, I’m home! I’ve had my heller myotomy and early results look encouraging – certainly I have burped for the first time in months (because my stomach valve was shut too tight to allow wind to come up before the op) and nothing I have eaten so far has hurt. It’s true though that I am on a sloppy diet still (or sloopy^*1 as it was written in my notes) and I don’t expect to know for sure how good my outcome will be for around 6 weeks when I expect to have healed properly and tried eating most things....toast...I dream of toast.....!

I have been pretty good in myself apart from the usual post-op stuff of soreness and the like but pain is well under control and the swelling is already starting to go down. Of course, with 5 incisions for this op, my stomach now looks like I have had a run in with a knife wielding maniac but there you go. At least I will be able to spin some wonderful yarns when I am old and in my nursing home ....my scoliosis scar can be shark bite, these can be knife attack, the appendix can be surgery with a spoon...oooh, I shall have such fun! I have been wondering though, if you look at my tummy from the right angle, will it look like a smilie?

More on all the wonders of life the universe and hospital soon!

^*1 ...and I thought this was something you could only get on the John B

More Achalasia advice that I stole from someone else

I admit it, I am a thief...I stole this advice from someone else’s site...I just thought it was good and decided that if I added it to my site it might reach a few more people....OK I know that there aren’t that many people out there to whom it will be appropriate, but hey, does that make it any less relevant? My own feelings on the suggestions are in brackets and italics

Outlined below are support suggestions from sufferers of Achalasia. Those quoted are from all stages of the disease and have had a variety of treatment options. Please read the information below and even print it out to discuss with your friend or family member who is suffering with this disease. A frank discussion can help both of you manage the illness more effectively.

While reading the information below, please keep in mind that Achalasia will affect the patient for the rest of their life. It is not only chronic, but it is a degenerative illness. Therefore, surgery and other treatments are not cures, but rather “stop-gap measures” to help the patient have a better quality of life.

Things to do or say

• Listen to the A. patient's explanation & believe it & try to understand it (they find it unbelievable that they cannot drink, too!). (Oh yes, I do...!)
• Supply cookies/biscuits without saying how bad it is for your diet, it is often the only food that goes down. Find out what foods work. (Biscuits = good, apples = bad and no, it makes no difference if you chew them well)
• Be patient – eating is a slow process. (very slow...)
• If sharing a meal, make sure that there’s extra water on the table in case the patient forgets. (In my experience, this is a huge help)
• If you want to (or have to) dine out suggest a place to dine that has a big variety of foods not just a fast food place where you may be limited. (Another helpful thing) Remember it is easy to start to withdraw when you can’t go out and share meals with your friends.
• Do listen when we need to talk about our concerns, and be compassionate when we're not feeling good. We know you don’t have the answers. We may just need to vent. (Oh yes!)
• Laugh together, but not at our predicament. We already feel a bit freakish.
• Remember, this is not a problem with the throat – getting food past the throat is the easy bit...

What NOT to do or say

• Please don’t say "I thought you couldn't eat that" when the person with A is having a "good" day (why are there good days and bad days? Doesn’t make sense, but it seems to be true).
• Please don’t offer unsolicited advice (for example, insisting there is a problem as a result of drinking soda, etc…).
• Please do NOT tell them about Slim-Fast, Ensure, any diet drink and ask if blending food works. Achalasia affects swallowing both liquids and solids. They have probably tried everything.
• Don’t pretend you know what it’s like to have the stuck feeling, and how to get rid of it. This is different. (Sorry, but this really is true!!!)
• Don’t pat them on the back while they are having trouble swallowing– it’s not choking. Talking is a problem (or may not be possible) when they are having trouble….it’s all about concentrating on getting it down. (Oh yes, and it hurts so that’s why I go red in the face and look like I am going to cry)
• Don't let the first thing out of your mouth be “Aunt Susie didn't swallow well and she had this terrible heartburn. But she got better with the right medication and I am sure yours will be fine too.” Sorry Achalasia is not GERD.
• Don’t be upset when they can’t tell you what they can and cannot eat at times. It’s down to not even knowing. Believe it - this is a weird disease with apparently no rhyme or reason.
• Finally, sorry, but however long you wait, it isn’t getting better and isn't going to get better without treatment... .

Here are some suggestions for words to type into Google so that you know the basics.

Achalasia, Heller Myotomy, Manometry, Dysphagia

I’m going on a date...Surgery date that is...!

I have been given a date for surgery^*1...it’s soon...in fact, it’s next Monday and so I feel an urgent need to get some stuff down on paper in the hope that it might be helpful to anyone else out there who is feeling just as freakish as me. Yep, you heard right – freakish!

Not being able to eat or drink without at least some discomfort makes you feel really weird. Mostly you can’t be bothered with food, as eating becomes a chore – something that you know you need to do, but holds absolutely no pleasure. Hubby is always asking me what I fancy for dinner... "Um, nothing" is usually the response. How can you fancy anything at all, when you don’t know what you can get down you? Trying to eat with friends or family seems (to me) to often result in pitying glances...Actually, that pity is appreciated, as at least it shows that they know you’re having a hard time and they are sympathetic to it. Strangers on the other hand see you going red in the face at the table, they see you leave your food and who knows what judgements they make? Somehow you feel a little ashamed for the waste of it all too – you want to explain there’s a problem, but it’s not really a dinner table kind of conversation, is it?

The fact of it all is that to eat a normal diet just hurts too much. I haven’t eaten bread easily for almost a year and my diet has become increasingly liquid - more and more soups and porridge etc. Less and less meat and vegetables and anything good for me; more yogurt, more custard (there’s some compensations then!) but less fruit. Do you know how boring it all gets after a while? I want toast and MacDonald’s and Subway and pizza and roly poly pudding (but not all at the same time) – but to try them at the moment would simply result in tears at the dinner table (if you eat things like MacDonald’s at the table which seems unlikely ....!). Anyway, if you have some issues like these, you know where I’m coming from – right?

The not eating is pretty awful, but supremely more gross than that is the following (now I’ve warned you so don’t blame me if you get all grossed out!). OK, the scenario is this – your stomach valve doesn’t open so food takes hours and hours to drip from your oesophagus through into your stomach (assuming you are upright and gravity is working fine today). Imagine if you will that you drink a cup of hot chocolate just before you go to bed. You lie down (gravity is effectively switched off) and the liquid goes nowhere. At 2am you slide down the bed a little and off the pillow and suddenly wake drowning in (no longer hot) chocolate. Yep, you breathe in your yummy drink (see I told you it was gross) and wake up violently coughing and spluttering. Frightening or what? It’s called aspiration, and it’s not very good for you (no? – you don’t say!!). If you have achalasia and you leave it untreated, this can lead to infection and you can get aspiration pneumonia....there – lesson to you – if you think you have achalasia – GET IT CHECKED OUT!

Anyway, I am getting fixed and although surgery doesn’t cure the condition it’s supposed to alleviate the symptoms and that’ll be good enough for me. I can’t wait to get back to seeing food on my plate without viewing it with suspicion!

^*1Heller myotomy

A very moggy Christmas

So, we gave the cats presents for Christmas (I know, I know, you may think this odd, but we do!). A few cat treats (yum yum) and a small sheep attached to a rod with a length of string. Clumsy loves the sheep – in fact so much so, that he has taken to trailing it around the house with the string (and stick) being dragged behind him, only dropping it when he trips himself up. Hubby was amused to find it halfway up the stairs and coined this little ditty:

Our cat had a little sheep
It’s fleece was kind of soggy...
...and everywhere the sheep was found
It was dragged there by a moggy!

Happy New Year!

Just that.....



...I hope that it is truly happy, healthy and wealthy for you all.....

Merry Crimbo....!

Hi everyone

Just wanted to say thanks to you all for reading my blog and your comments and support.
Nothing else except....

Merry Christmas to you all!

...the goose is getting fat...

I love Christmas, always have – it’s not just the presents and the decorations, but for me it’s all about being able to show people how much you care for them, in a world where we don’t often take the time to say it. Somehow I always seem to be too busy to meet up for lunch and while away the hours just chilling out with the people I love best. I admit it too, I am a busy type of person who finds it hard to just ‘be’ – I always seem to have the next thing to be done on my mind and it’s hard to find the things that entice my nose away from its grindstone. Friday nights with the BUF make me do that ...and so does Christmas. As a family we usually don’t turn on the telly on all day, we just spend our time, playing games and spending (what I see as) special time with each other.

This year though, I know will be different from normal and I don’t know how everyone else is going to feel. To start with, mother has gone away for Christmas to friends in Canada so that will be the first time ever that we won’t see her over the Christmas period. Then of course, there’s the big spectre – my achalasia. I don’t want to sound depressing but I just have no idea how it will affect other people over the dinner table (let alone how I feel about it). I was recently asked what I would eat for Christmas dinner and I flippantly said pureed carrots and bread sauce. Flip it may have been, but its not that far from the truth and the whole idea is odd – I am not looking forward to the food aspects of Christmas but isn’t that often a strong focus of the season? I am going to MBP and the SIL’s as well and feel bad already as I know I won’t be able to eat what she has made. I feel guilty about my medical condition which is nuts...I guess you just don’t realise what a focus food is in people’s lives and how much we all take it for granted until it becomes a problem. What’s worse is I know how much it upsets hubby as he is reminded every day, every meal, that I have a problem and one that really upsets him whenever he tries to imagine what it would be like to live with it.

For me, I just think this year will be odd and different but that doesn’t mean that I won’t still enjoy spending that special time with my family.

EEEEking Ebay....

I am currently waiting from a response from an EBay seller after asking them if I can cancel my bid. I just bid for an item but forgot to insert the decimal point at the appropriate place in the amount I wanted to bid and find myself with a possible £582.00 to pay for a £5.00 item.

I think my senior moments may be starting....

Fishing for cats

Well, Christmas is nearly on us again and hubby got the trusty tree down from the attic. For days Grace was eyeing the box, trying to get in and today we opened it up – cue one excited Grace and one rather bemused looking Clumsy (eh?? what’s this and what’s it doing in my house??) – Clumsy looks slightly bemused much of the time so I wasn’t too worried there – and Grace obviously clearly remembered her very own climbing frame that was stashed away in the attic after too few weeks of play time..

That was it; we plugged in the branches and waited for ...ooh....about 25 seconds. She was up the tree, down the tree, jumping in, jumping out (whilst Clumsy looked on in bemusement (predictably) being much too clumsy to even think of trying such antics)...well, plug in wire branches are not made to take the weight of 4 year old cats, however graceful and light-footed they are and before long the tree of 36 branches only had 34, then 32, then 28 and so on....

We muttered and huffed a bit and came up with a solution – a real tree with nasty spiky branches and dense growth close to the trunk to deter her and so toddled off out to buy one (real tree being much nicer anyway and keeps the poor Forestry Commission guys in work in these times of credit crunching!).

Having found a fine specimen, Hubby duly lugged it home and we set it up in its bucket of water in the lounge. “Top up daily” said the instructions “and it may be helpful to float some pieces of polystyrene in the water to easily see when the water level drops”. That seemed sensible, so we did. That was it, Grace comes in, investigates (Ow! Spikey!) tree and then spies the polystyrene beans and starts fishing in the water for them...

...ooo, bobby beady thing...

....ooo, wet....! ...(shakes paw)...

...ooo, bobby beady thing...

....ooo, wet....! ...(shakes paw)...

Repeat ad infinitum.

Well, it entertained us....!

Things happen in 3’s

As a quick add on to the last entry we went to the pub quiz again and lo and behold there was nothing special going on. We thought the questions were really hard and thought we hadn’t done very well until we added up at the end – 91 points didn’t sound so bad....especially since he announced that second place had tied at 90 points. We had won!

Now each question is worth 2 points so you have to ask how our score was an odd number and it’s all down to the fact that the SIL remembered something about a serial killer called ‘maybe the panther?’ – Turns out it was the Black Panther, but whoever marked our paper generously gave us 1 point for getting half the answer. Thanks guys....

...so we won the princely sum of £15 which I am going to save for when I can eat again and treat us to a pizza!

Quality Street and quizzes

So, PMB and the SIL go out with us once a fortnight to the pub quiz and we have a lot of fun and suddenly find out just how competitive we all are...!

It always comes to the end of the night, we’ve totted up our scores and we wait with bated breath to see if we’ve made it into the top three. The quizmaster always calls the teams ‘in no particular order’ but leaves the best 3 until last and we are gutted if we don’t get close...it’s a cash prize (a proportion of the takings) but for us it’s not about the money at all...it’s about the winning!

So, the other week we went and when we arrived we found out that it was a pink night in aid of breast cancer. All the people (apart from us, because we didn’t know) were wearing pink and there were special prizes and a raffle etc. We did the quiz as usual and although not especially happy with our score (especially since for some stupid reason we failed to realise that there was a character called Maria in the Sound of Music) we sat waiting for the scores as usual. It was at that point that the phone rang (or at least it buzzed around on the table a bit because it was on silent) and it turns out that it was mother who had arrived at the station early having just come back off holiday and wanted a lift. The original plan was for her to arrive about 30 minutes after we left the pub but there you go, that’s public transport, late if you’re in a hurry, early if you’re busy!

So, we decide to rush out the door to get her and Alan (the quizmaster stops us) – “You can’t go” he says “you’ve tied for first place and there’s a tiebreaker question.” Now bearing in mind this was the first time we have ever got to first place (even if it was a tie), mother or no mother^*1 we were going to stay for the next few minutes....anyway, well, you know that thing where they ask a question and the answer is easy because you know it, well it was like that. As an avid watcher of Top Gear and a bit of a closet petrol head, when they asked how long the new Fiat 500 was, I confidently picked a number and was only a few inches out...so....we won...and because it was a special night, we got a box of Quality Street (what's in your tin?) and no money!

Next time we went to the quiz, it was another special night, this time for Pudsey Bear and Children in Need. People were wearing pyjamas and just like last time, we didn’t know about it so turned up in regular clothes (that’s the problem with going every fortnight, the announcements of what’s happening next week aren’t much use to you!). This time, mother was at home so we had no worries of urgent phone calls and we were all armed with Barclays Bank pens ^*2 and were ready to go. At the end we knew we’d done well too – no silly Maria answers and we only dropped 6 points in the whole evening! Amazingly for the second time we found out that we’d come joint first and had another tie breaker. Eeek! It was a football based question (no help from me here or hubby, we only watch rugby) so it was all down to PMB who doesn’t really watch football either. Anyway, he conjured up a figure out of mid air and won again...another box of Quality Street!

Ah well, I guess that’s Christmas taken care of and besides which with all my not eating proper food (unless its been 'sloppified'), I could do with the extra calories!

^*1Mother had come all the way back from China via Russia on the Trans-Siberian express and now we were going to be late meeting her at the station – that’s pretty poor really, isn’t it. I think we are very bad children...
^*2The SIL takes it very seriously that every time she goes to the bank and reads the sign that says please take one of our pens - she does!

Aaaah bless....

When I saw the manometry doctor we were talking about my condition (funny that, normally I go and see the doctor to talk about sport ) and I mentioned that I had lost a lot of weight and was finding it impossible to gain any.

“We see that a lot with this condition”, he said. “People lose weight and generally just fail to thrive”

I felt like he wanted to pat me on the head and go "there, there"^*1....failure to thrive indeed - sounds so odd, doesn’t it?

^*1I like this version from Jools Holland Show....

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....!