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....

Is it really 2 ½ years?

I can’t believe that its 2 ½ years ago today that I was being wheeled down for my surgery and wondering what the future would hold for me. Indeed, what I was really hoping for was that someone would stabilise my spine as a very minimum to stop it hurtling off to my right hand side at an alarming rate. I find myself sometimes idly speculating about what would have happened if I hadn’t had it done. Having reached a point where my head was then outside of my hip line, let alone my body line, gravity was really taking its toll and my 1-2 degree a year shift (which is typical for a progressive scoliosis) turned into a 6 degree shift per year in the last 2 years before surgery. OK, let’s do the maths...I was about 75 degrees before surgery in my lumbar curve; add 15 degrees for 2 ½ years – that would put me at a 90 degree lumbar curve right now. In another 2 ½ years that would be over 100 degrees...so, if I hadn’t had the surgery that would have been the situation in 5 years and I would have been looking at 130 degrees in 10 years. I now see why they told me that I was looking at major organ failure and paralysis in 10 years if I didn’t get it done....whoa.....scary....!

It seems to make it all the more amazing then that I now find myself sitting here at the desk in the middle of my office chair. By in the middle I mean that my body is pretty much equidistant from each chair arm...I don’t lean to the right, or the left. I, to all intents and purposes look completely straight. I’m not perfectly straight externally but only me and hubby can see it (and he only spots it occasionally). Internally I look pretty twisted and stuffed full of metal but hey, who can tell?

Of course, the surgery hasn’t been without its drawbacks, but the last time I saw my surgeon he was pleased – and as to the minor remaining niggles? Well his words were “you can’t make an omelette without breaking eggs!” I figure I’m lucky, I had a spina bifida repair at T12/L1^*1 and all the associated scar tissue and spinal cord compromise that goes with it, a broken vertebrae at T10, my spinal cord was split lengthways (this is not normal) from T11 all the way down to L4 (that’s at the top of your bottom/pelvis). To add insult to injury, my spinal cord was (and still is) tethered at T12 and L5 (the one below L4) and L4 and L5 were fused together. That’s without the scoliosis which was what the surgery was for! I figure that my poor old surgeon had a difficult task in front of him and to achieve a 50% correction and a near upright posture was close to a miracle. So what if I have a chunk of my belly and my leg where all feeling has deserted me...I have a life and that’s all that matters. Anything more, like the greater use of the wheelchair or getting my purple leg is pretty minor in comparison to what I would have had to go through if I hadn’t had it done.

I sometimes think actually that all the people out there on the scoliosis forums (and I include myself) stick so much to the ‘better the devil you know’ part of your scoliosis that you don’t really appreciate what the future might be without the surgery. Sobering sometimes, innit?

^*1 That’s about ½ way between your belly button and your bra strap line - assuming of course that you either wear one, or if not, have some vague idea of where it is....

Legs and more legs.

I know quite a few disabled people and when I go away there tends to be quite a lot of us in wheelchairs and the like, causing mayhem everywhere we go^*1.

Last entry, I mentioned my ‘leg’. But what I didn’t say is that EO now also has a new leg of the same kind as mine (but black not purple). Talk about coincidence though – I turned up at a weekend away to tell her about my purple leg and she tells me she had a ‘leg’ made too and we got them within days of each other. Well, it turned out, that we ended up sharing a room at this trip away and at bedtime we compared our AFO’s. Her’s is a left leg and mine is a right so we had a tremendous amount of fun with a completely non matching pair – and added to the laughter factor is the fact that she is way taller than me and so too is her leg. I’m afraid to say we had some very silly moments with a pair of legs and wondering what we could do to frighten the chambermaid by dressing them up in shoes and socks and leaving them in the bed....

^*1 Believe me, with 12-15 people in wheelchairs all at the same time and the same place, mayhem happens...we don’t work at it, it just is!

Did I ever say purple was my favourite colour?

I have had to have a lower leg brace (or AFO as it is officially called) to stop my right foot from turning in and under. It seems nerves in your back can do funny things and too much tugging on them can cause all sorts of unwanted side effects in your extremities. Anyway, I went for my plaster cast and first fitting and was asked “what colour would you like this in?”. “What colour can I have?” asks I. “Anything you like“, the guy says.....umm, that’s how come I ended up with a purple leg brace then!

So my leg (as I have come to call it) arrives and it turns out to be very purple indeed. In fact, it even has purple straps and just to be really colour coordinated matches my wheelchair too. Nuts eh?

Anyway, I was away last weekend and saw an old friend who asked me how I was getting on with it and how useful I was finding it. I admitted that driving had been increasingly become a bit of a problem with my foot turning and my ‘leg’ had made life a lot easier.

“D’you know”, I said, “It’s like driving with a foot on the end of your leg instead of a mop...”

...I don’t think she’ll ever accept a lift of me again!