So where exactly is Munster?

We have just had a really nice weekend when the BUF and the VNSO came to stay. In fact, the only thing that might have improved it would have been Friday night (as they came on Saturday) and the chance to make a dent in my Merlot mountain – oh yes, and possibly a little more time to peruse Tesco’s finest^*1!

Anyway, on Sunday, we were at the dining room table, having just played a board game and I got up to make a visit to the ‘little girl’s room’. Well, I wasn’t up for long, as my body and head were quite keen to get where they were going but my legs just stayed where they were and I went thump down on to the floor.

“Are you OK?” asked hubby.

I thought for a second...

“Um”, I said (rather experimentally) “Ow?”

“So”, came back his voice from the table, “Where is Munster?”

The fact that hubby just blithely carried on (well, his excuse is that I do fall over a lot!) resulted in much amusement...

So, I guess I know where I fit in the grand scheme of things....and that's somewhere behind scoring to find out who won the game I guess. But, do you know, it’s not that that worries me, it’s the fact that I fear that now whenever I chuck myself on the floor, some bright spark is going to pipe up “Where’s Munster” instead of “Are you OK?”!

Oh yes....and ...... if you want to know!

^*1 ‘In’ joke - sorry!

New poll...

I have added a new poll that will run for the next 2 weeks.

The last one showed that 66% of my readership have a disability and 33% are close to someone with a disability which kind of surprised me. I don't know about the last 1%....

Anyway, I kinda think the polls are fun so I think I will do a new one every 2 weeks - you never know, I may even do one asking if you eat the stalks of broccoli.

Anyway, if you have any ideas of what I should ask, then leave me some suggestions via comment. Keep them clean though please...

The Link magazine

Just as a curious kind of aside, I get a magazine form the Spina Bifida Association, and just after I wrote this entry, the latest edition popped onto my doormat. You’ll never believe, but there was an article on...yes, you’ve guessed it...the aging Spina Bifida population. How wild is that?

Added a poll

Just out of interest I've added a poll on the right hand side. I'm simply curious why people read the drivel that I type!

I may try another question next week so keep a look out...

...and by the way, I can't tell who you are from clicking on the box!

A carrot or a hammer??

Today hubby and I went out for a day trip to a local county show and we were lucky when the sun shone all day and it was really warm. Now struggling around a lumpy bumpy field in a wheelchair was almost bound to result in:

1. a face forward tumble out of the chair and
2. a cut hand /skinned knuckles on the portaloo door (ew!)

but nothing like that was really going to dent my mood, as to get such lovely weather so early in the year was just great. We even ran into the BIL and his partner so that was nice too.

On the way home, hubby suggested that we stop off in a little hostelry that he knew. “You know the one” he said, “It’s the one across the other side of the river that you have to go across the footbridge to get to”.

Well, you can be sure that I remembered it then but only because of a story that a friend of hubby’s told me from when a group of them went there. On that occasion they took someone with them who was a bit older than the rest of them – someone who actually had pretty advanced Parkinson’s disease and who couldn’t walk very far at all. He told me that he took one look at the footbridge and just decided that it was too far to walk and so hubby’s mates cooked up a scheme to get him across to the pub. Now this scheme involved a sack truck and some elastic bungee cords. Now when I first heard this, I think I assumed that they must have been to at least 3 pubs already(!), but in the end, they did get him across the bridge in exactly that way. They stood him on the trolley, strapped him on tight with the elastic cords and wheeled him across to the pub where, no doubt, he had to sit in the garden because the trolley wouldn’t go up the steps to the front door. I guess it was the thought that counted though...

Anyway, I asked hubby why he thought that the chap had refused to use a wheelchair and hubby couldn’t come up with anything apart from ‘the kind of prejudice that is typical of people who are determined not to give in’! Now most of my friends might think well, heck, she can’t talk, she’s as stubborn as they come and half the time doesn’t use her chair when she needs it...and yes, I admit it, there are times when that really is true. But equally there are times (like today) when I see my chair as a tool and something to make my life easier (despite the faceful of grass and the skinned knuckles!).

“Why wouldn’t he use the right tool for the job?” I queried. “After all, you wouldn’t try to knock a nail in with a carrot would you?”

Death by diarrhoea

So, MIB^*1 has joined our group and we were sat at the dinner table when the subject of drugs came up. Now, I know what you are thinking and you’re wrong...you see, if you put a group of disabled people around a table sooner or later the conversation will turn to drugs or surgery (LB bless her taught us all liver transplantation over the dinner table!) and in this instance it was the merits of one kind of painkiller over another.

We had mentioned aspirin and paracetamol and were then moving on to ‘harder’ drugs when MIB decided to tell us about the time she was put on oxycontin when she came home after surgery. She also mentioned the rather alarming side effect of ‘bunging you up’ that various opioids are famous for and so decided whilst in the chemist getting her controlled substance prescription filled, that she would pick up some syrup of figs. She picked up 2 bottles and put them on the counter and the 16 year old part time assistant turned to her and said:

“I don’t think that we can sell you more than one bottle of that, I’ll have to check” – and disappeared out the back. Time passed and eventually she came back - “Thought so, we definitely can’t sell you more than one bottle at a time...we can’t risk you harming yourself...”

At hearing this, in pain and after having to wait for so long, MIB retorted “Here are my 50 morphine tablets, and here’s the syrup of figs. Now, if I wanted to commit suicide, which do you think would be my weapon of choice? Do you really think I’d drink 2 bottles of syrup of figs and then sit on the toilet until my insides dribbled out?!?”

Her daughter waiting by her side slunk quietly away ...




^*1Mad Irish bird

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?