A walk in the park!

Today I went to the park with my brother and we went to the cafe. This was a big deal to me, since I had set it as one of my targets to achieve before Christmas but didn't really think it would be possible. On Tuesday it will be 8 weeks since I had my surgery (and Christmas eve too....which is rather more exciting!). My brother rather gently reminded me that I hadn't actually posted any updates for a while and so I took the gentle rebuke and here I am, blogging again.

So...where am I? Well, you're wrong, regarding the cafe, I got there and back again (rather like Bilbo Baggins) and I'm now in my comfy chair, which is pretty much where I've been for the last 3 hours. Going out is tough on a girl you know. Actually, I don't think it would be quite as bad if I didn't use sticks ironically, as its my thoracic fusion which is protesting the most - probably due to the 10 extra screws that are in there ...and yes, no typo, I said 10 and I meant it!

I saw my surgeon for a check up recently and he told me that my bottom joint was completely degenerated - apparently something of a shock to him as he hadn't realised how bad it was before! There were 2 reasons to this:
1. The scan didn't look quite that bad ...and
2. I wasn't complaining enough about the pain..

So, that was the bottom, and then there was the top. Again, he encountered a bit more than he expected since my 'failed bone graft' that was spotted about 2 years ago, apparently was a graft that had never taken in the first place. I have been wandering around quite happily since 2006 with the only thing connecting the top and bottom of my back being the end of a rod and a single screw. I think it was for this reason he whacked in another 2 rods at the top, to be as sturdy as possible. He put 2 more in at the bottom as well to give as much stability to the joint as possible. He reminded me that I have had 2 lots of major spinal surgery rolled into one, since normally he would not do this as a single operation and I really should take it easy for another 6 weeks. I reminded him that I was impatient and wanted to do stuff...we reached a compromise and I can do some stuff but not much. Limits include lifting stuff but no more that 20lb (by the time I next see him at the end of January) and not twisting under any circumstances. Ever since I had my op in 2006 twisting has involved turning my head and reaching backwards with my arms, but I didn't realise that I did have a little twist left.....but I don't now!

Some good news was that because my bone graft hadn't taken, he used the opportunity to straighten out a little of my curve at the top and try and get good saggital balance at the bottom. Amazingly, he succeeded so well, that for the first time since I was about 14 years old, my weight distribution is roughly equal through both legs...53%/47% according to the Wii fit!

Little bits of other news...I'm off all the high powered pain meds and managing pain with small amounts of codeine and paracetamol (Tylenol for those across the pond!) - probably (definitely) smaller amounts than pre operation - I know I'm not very active at the moment, so maybe that's why, but its rather encouraging. Day by day I do a bit more and today I had my walk in the park...how great is that?!

Five years fixed...

An anniversary just passed me by...it swam by me while I was getting on with life and even when PTV wished me a happy anniversary, it didn't quite impact on me. It's only now, 20 days later that it somehow hit me.


I think today had something to do with it. Today, I went to give a talk to the Women's Guild - a talk entitled "Nothing is Impossible". Now many of the ladies there were elderly, several of them were, apparently, deaf and some of them looked like they'd be unlikely to last the hour. In fact, the lady who booked me was so vague about the location of the hall (it was, she said, at the bottom of the hill...you know the one, well, it's there) that I was concerned about the possibility of her being senile. Considering that the talk was in a town I rarely visit, telling me that it was at the bottom of a hill that she didn't know the name of, in the church hall, she didn't know the name of, was not exactly, well ... precise and when I spoke to her husband (yes really!) he wasn't a lot better! Anyway, I digress (as per usual) - I was really going to mention the talk...and the anniversary...and why they are linked.


I got to the hall (still don't know the name of it) and by dint of trying every door on the street that looked like they might go into a church hall (the first two were locked!) I found it with (almost) no trouble and with ten minutes to spare. I did the talk, none of the ladies fell asleep (amazing - maybe I did something right?) and they laughed in all the right places. At the end, I was surrounded by a little gaggle of women, all wanting to say something or to pat me on the arm and one of them even pinched my cheek in a grandmotherly way (or possibly a great-grandmotherly way). I was a hit!


The thing is (and this is where the anniversary comes in), in my talk, I spoke about my scoliosis surgery. I also spoke about my spina bifida and a whole heap of other stuff, but it suddenly hit me what PTV was saying...good golly gosh and all that, but it's 5 years since my back was stuffed full of metal - that's FIVE YEARS!!! Blimey...


After five years, I have a failed bone graft at the top of my fusion and I have days (like last weekend) where I get seriously grumpy with the amount of pain I still get. On the other hand, as I told the ladies today, I am so straight compared to the way I was, I can breathe evenly and strongly and my stomach is no longer squashed up under my diaphragm. Yes, I'm awaiting more surgery and yes, I use my wheelchair more these days, but all in all I don't regret having my surgery for an instant. There I was today, showing those little old ladies my x-rays and how my curve was progressing over those last two years before my surgery and I realised just how lucky I have been in my life. I've been lucky to have a great surgeon and supportive friends and family and a (more or less) straight body.


Happy 5 year anniversary me...I think I'll go and buy myself a tree...

It's my blogiversary!

I was just trying to find an early entry on my blog and I realised that it's my blogiversary!!

It's 5 years since I started my blog in a life where I was facing major surgery and an uncertain future. Many things have changed since then (including much of the content of my blog!) but despite the prospect of more surgery, I don't feel that same uncertainty about the years to come. We can none of us know what is going to happen to us in our lives, but I just look forward in the most positive way I can. For me it's not so hard, as I'm naturally a glass half full kind of person, but to be honest, life is actually pretty good at the moment. Hubby is well, my mother's arm is out of plaster and mending; the MIL, FIL & BIL are all ticking along in their normal way and my brother's life seems to be moving forward positively. We're getting to see the BUF & VNSO soon, as well as PTV & HLW and Christmas is coming -yay! (I am still a big kid when it comes to Christmas!) - after Christmas we have an exciting trip planned too...

Of course, somewhere in this I also have to fit in a teeny bit of work on my back, which is almost, but not quite where I came in 5 years ago. More meccano in my back will wait for a bit, but I will be getting a bit of maintenance by my surgeon next week. It will at least give me something else to blog about!

I do wonder sometimes - 5 years eh? Will I still be doing this in another 5 years? More to the point, will you still be reading it?

Of backs and bones

Time has come to update all your scoliosis people who have been following me from the beginning ... what do you mean you only ever read my blog when your search engine throws up the word scoliosis - you naughty person! Anyway, this post is for you...

I am now heading towards 5 years post op (yes really!), and some things have stayed the same, some have got worse and some things have improved so I thought I'd try and put some stuff down about it all. I have to say that it's been prompted by recent hospital visits, but I will get to that in time...

First of all, if you are reading this in the pre-op stage and are wondering what your future holds, please don't expect to be pain free. Your back is a finely interwoven mesh of nerves, muscle and bone and screwing metalwork into it is never going to make it 'normal' - you may be lucky and your pain may improve, but the surgery is to straighten you up and hold you that way so that you don't end up your ear pressed against the window when you drive your car! Anyway, my experience has been just that, I am straight but not pain free and this is what I told my surgeon when I saw him earlier this summer.

He ordered a CT scan (I blogged about it a while back) and I duly had that done. The whammy came when I went back into see him for the results. I warn you right now, I am going to get a bit technical, so stick with me! He discovered that although it is normal to still have back pain after scoliosis surgery, my pain is not exactly normal when considered in relation to that. To start with, my fusion has failed at the top - between T9 & T10 there is no bone graft - on the CT, there's just a black space - "You see that?", said my surgeon, pointing with his pen, "Thats air that is."

I have to say, that this wasn't really what I wanted to hear, and thinking that in the very middle of my back, the only thing holding the bones together was 2 screws and a bit of metal (that I stressed to bits in Disney last year) didn't actually make my tummy feel any less wobbly... He then moved on...

"You see that...?" - he indicates another black space between L5 & S1^*1 "You're supposed to have a disc in there^*2 and it really looks very unstable. In a nutshell, your fusion needs extending - top and bottom - say 2 or 3 levels (vertebrae) at the top and we should really screw the bottom bit in to your pelvis."

Oh great, thinks I - that's an interesting start to a Thursday (at least I think it was a Thursday!) but at least it might go some way to explaining why my neurological symptoms have been a bit variable. Unstable joints, changeable neuro stuff - it all seemed to fit together. Ah...dear reader (I've always wanted to say that!), I hear you poor scoliosis people getting stressed at the nerve stuff...don't be, this is particular to me....! Anyway, he suggested going in to hospital and they would inject some kind of false joint jelly stuff in the gap at the bottom to see if it would help delay the bigger surgery for a bit. I saw him on the Thursday (I remember now, it was definitely a Thursday) and I was in the following Tuesday - not the treatment I am used to on the NHS I can tell you. He told me to go away and keep a pain diary and then see him again in a month - which is kind of where I am right now...

I go back and see him in a week or so. The big question is, is my back any better for it? Well, yes and no. Yes, I think it's better, but no I don't think what he did had much effect - I think that holiday in Turkey helped more. Do you think I could get him to prescribe regular sunshine all inclusive holidays on the NHS?

^*1Technical speak for the very bottom of your back
^*2 In fact, the only disc I have, below T8!

A Scoliosis surprise...

I suddenly realised that I have been a little remiss in keeping you all up to date with news - instead favouring men in tutus and disability wonderings and so, I thought, since this blog started its life as some extension of the Scoliosis support forums, that I really ought to mention bendy backs from time to time. In fact, I really ought to talk about my bendy back, since this blog was supposed to be about my experiences, wasn't it?

My bendy back, despite its 30-odd degree curves, (well hidden inside my straight exterior) and held together with scaffolding and screws, serves me well. There are some who would say that I don't treat it too kindly, especially when they see how I wince when I drive over speed bumps, but there you go. Actually, I don't wince that much when I drive over speed bumps, despite the fact that I possibly drive everywhere faster than just about anyone else I know, but at least when I drive I have the steering wheel to hang on to. It's an odd thing being a passenger in a car - you have nothing to hang on to, every bump and you are tossed around like a little rag doll - to be fair, its not the getting thrown in the air I care about, it’s the coming down on the end of the rod that does the damage... in fact, several of my friends are now saying "well, you try doing that with a rod up your ar*e", before I manage to do so. Cars are kind of OK, at least my feet normally touch the floor, which helps and being able to see out the front (thus getting some advance warning) also helps, as you can boost yourself up from the seat so that the springs don't hit you in the rear end quite so hard when you land! Nope, cars are alright, its coaches and busses that are the killers. You have no idea what is coming, my little legs have no way of reaching the floor and just dangle in space until I am hurled upwards at maximum velocity, only to experience a tiny 'oh no!' moment (just like Wile.E Coyote) just before I come down to earth with a, very much unwanted, bang. This is usually followed by a string of expletives (mostly expressing the term 'ow!') and then a chorus of voices saying …"you try doing that…"!

Anyway, I digress a bit, except that speed bumps are some of the more uncomfortable (nay painful) things that go on with my back. Those of you who follow my back know that I am not pain free, but I am in a so much better place than I was when my head was increasingly moving sideways as if planning on driving with my head permanently stuck out the window ^*1. I feel that I cope with my back pretty fine, I am happy with my results and well, that's about it really. My only concern really has been that I am supposed to get an annual checkup with my consultant and I have been waiting for my latest follow up since 2007. Yes, you heard me right, 2007. To be truthful, I have actually seen my consultant once since then, but only because I paid to see him privately over a concern that my physio had! I have not seen him at his NHS clinic, even though he told me that he 'wanted to keep a close eye on me'. If this is a close eye, I hate to think what happens when you slip below his radar!

It's not like I haven't been chasing for an appointment either - oh no, every 6 months or so, I phone up and speak to the Bureaucratic monster lady and she fobs me off for a bit and so on and so on. This year I decided to create just a teeny bit more and told her that I would phone her every week until I had some news and lo and behold, she discovered, while I was on the phone(!) that she did have an appointment after all. Well, fancy that….! Hmm, if anyone else ever tells me what a wonderful healthcare system we have in this country, I shall, I shall….well, do I shall something…!

Anyway, back to the beginning, having rambled off topic for much too long. I did actually get to the clinic and after an hour and 20 minutes wait (good old NHS again!) I got to see my consultant. To be fair, he is a really nice guy and probably majorly overworked, but all the same it's still not a great system. Anyway, he had a little look at me and a chat and then gave me some news I really wasn't expecting. He said, you know how you only have one joint that moves at the bottom of your back (L5), well, I fear that it is unstable …and by the way, where do you get your pain? I pointed to there (there and there) and he went Oh. Mmm. Ah. All fairly closely followed by 'we may have to look at extending your fusion - top and bottom'. I think my eyes opened wide, and my mouth went into a little tiny O shape, and it was my time to say Oh. Mmm. Ah. It was all rather unexpected really…

Next he decided to check when I last had a full scoliogram and CT scan and discovered it was in 2006. Yes, really in 2006, the year that I had the surgery done - that 2006! That really is a 'close eye' isn't it? Anyway, that's where we are now, my appointment came through yesterday for the CT and he gave me the number of his private secretary instead of me having to contact that BML again. This is so that once the scan is done, I might hope to see him before the end of the year - maybe even before the end of the summer. I actually find all the waiting quite frightening really - what if I had had to wait for my achalasia operation (which I had done privately) - there I was diagnosis to surgery in 3 months (and would have been quicker if it was easier to diagnose) - if I had had to wait 3 year, and on a good week only lost a 1lb in weight throughout that time, well, it doesn't really bear thinking about. Anyway, watch this space for more news - I promise to be a good blog mama and write often ;-)

^*1 For you all across the pond, please remember the driver sits in the right hand side of the car …and yes I know that seems odd!

BTW, I know there are a ton of broken smiley links in the BML post, but hey, I only have so many hours today, so please ignore the pictures. Would you have time to examine all your oldest blog entries to make sure that they are all 100% intact? No? So - please give me a break!

4 years just slipped by...

I just realised that I have missed a very important anniversary - that of my metalwork. Yes, that's right, my surgery was over 4 years ago and in fact, exactly 4 years ago today I was struggling to even breathe without huge doses of morphine and could hardly lift a thing. I distinctly remember that I couldn't figure out the controls on my Mp3 player, my brain was that addled by large doses of narcotics and the BMB was trying to encourage me to get enough brain cells all firing in the same direction to try and read a book. It all seems so long ago and so much like it's just a story that probably happened to someone else. Funnily enough, I actually do some public speaking these days and the more of it I do, the more like a 'story' it all seems.

There is no doubt that my scoliosis surgery changed a lot for me - some things have had their down sides, but other things are nothing more than amazingly good. You know, I recently found some photos taken over the 2 years before my surgery and it was noticeable how much my curve had progressed in that short a time. In fact, when I look back (with a seasoned eye) I realise how awful my life would have been if I didn't get the surgery done. I know that this isn't true for a lot of people with scoliosis - those with stable conditions, whose curves are not progressing, have no fears for their future and even those who do have progressive curves may not to need to worry too much. It all depends on the speed of progression, the location of your curves and whether you have any other complications with your spine. My major curve was in the lumbar area with a corresponding thoracic curve in the opposite direction - and both were rotating to the right. My lumbar curve was progressing at around 6 degrees a year and had reached 75 degrees and if that wasn't enough, my spinal cord was split lengthwise (still is) and was attached (tethered) at the top and bottom of my lumbar curve. It meant that my spinal cord was getting more and more stretched, the further my curve progressed - this wasn't really too good a good plan I don't think....

Anyway, all of that background (which I know all you long term readers of my blog already know) meant that the surgery was really a no-brainer, despite how much I tried to kid myself that I didn't really need it! These days, I guess I am as recovered as I ever will be and I have the chance to look back and see what it has meant to me and the impact that such surgery has had on my life .Now, those of you who know me, know that I am a pretty positive person, so you may be surprised that I am about to give you some of the negative things^*1, but hey, you can't list all the good things honestly, without some honesty on the bad stuff too. Bear with me on this though - there isn't much bad stuff at all, anyway - here goes:

Bad stuff Number 1 - I still have back pain. I wish I didn't, but I do. Some days its not too bad and some days its horrid, but then lots of people have back pain, so that keeps me within the bounds of normality, doesn't it?
Bad stuff Number 2 - My metalwork is weird in extreme temperature. I found out that it contracts in the cold at a different rate to your interior tissues and it is just not a nice feeling at all. Last summer, in 44 degrees, I also discovered that it expands at a different rate too and so that is especially odd. When it gets cold, it also takes an age to warm up - this winter has been way too long for me but I have become an expert in vests and thermal undergarments! I now have lots of new vests (sexy!) and even a battery powered heated waistcoat - I am now an expert in a subject I previously knew nothing about! LOL!
Bad stuff Number 3 - My left leg really doesn't work in the way I'd like it to, but I have learned some control of it. I no longer move my hip and thigh forward to walk but throw my left foot forward from my calf (which sound odd but believe me it works!) and in doing so I get by just fine. It's also enabled me to get an amazing collection of very funky walking sticks (mostly bought from SwitchSticks.com) which I wouldn't have previously done. It has also meant that I make much more use of my wheelchair which has given me so much independence its not true. I find it truly liberating to be able to go into town and spend all day shopping, never worrying about how far away from the shops I have to park. Compare that to the way I used to be - parking close to where I needed to go - going to just one or two places and then having to go home, too tired or in too much pain to continue...you see, even the bad stuff really has its compensations!

Of course, in the good tradition of this blog, I'm sure a list is coming on for the good stuff...forgive me if I don't bleat on for ever though - I don't want to type my fingers down to stumps! Anyway, here goes:

• I am alive !
• I am straight! (well I look it anyway even if I do still have 35/30 degree curves inside me still!)
• I can go to the cinema without leaning over so far that the seat arm digs in my side.
• I can walk (no sniggering now...)
• None of my internal organs is squashed any longer
• My muscle spasms are so reduced its not true
• I can breathe with both lungs!
• I can wear stripy jumpers without making onlookers tip their heads on one side.
• If I am on a boat the ocean no longer looks like it will all run off the right hand edge of the world.
  
• I have no fears for my future and what will happen to me

In fact, I feel that I have the kind of future that I never thought I would and that really is amazing but as in all the great Oscar traditions, I have to acknowledge that this really has very little to do with me. I have to thank my surgeon for doing a great job and have to thank hubby for being my greatest support. There are also so many other people who helped me through, from the scoliosis forums, to friends like PTV and the BMB. Sometimes I say I cannot imagine what my future would be like if I hadn't had this surgery, but in fact I can imagine that very well and I am exceedingly grateful for all those people who helped get me through it. 4 years is quite a long time, but even though it seems more like a story sometimes, I know it happened to me and I am so happy to have my metal rod, despite its little idiosyncrasies!

^*2

^*1 Although given my last rant, you may not...!
^*2 BTW, this has nothing to do with anything in this post...I just liked it!

Those "down with disability days"

I recently had to go to the local hospital with the MIL who's been a bit poorly and I said I would meet her over there. Now, as it happens, the hospital really isn't too far from my house, but it's just too far for me to walk and is too hilly to use my chair, so I wanted to drive and park somewhere reasonably close. I allowed half an hour to get there (which is plenty when you can actually see the hospital building from my house if you squint through the trees) and was feeling pretty smug that I was organised and ready to go.

The smugness started to wax a little as soon as I approached the car park and realised that there was a queue to get in - I followed the signs directing me up a side road to the car park, only to discover that it took you round in a big loop and joined the back of the queue which only looked to be around 6 cars long from the entrance. Sneaky blighters - there were around 24 cars in front of me and nothing was moving so I decided to try elsewhere. I headed for the disabled spaces certain in my optimism that I would find something there. In fact there are a total of 8 disabled spaces in the hospital car park^*1 which seems ludicrous since many people attending hospital are likely to have a disability…aren't they? Anyway, my sunny nature started to fail when I saw they were all full and time really started to tick by quickly - my smug half an hour seemed to be fleeing like, well, like a flung thing…!

I headed for the overflow car park - this is a big car park, across the road and runs along what used to be a railway line - it's quite a way from the hospital, but it's flat and I had my chair so didn't have to worry about the distance being too far to walk. I got down there (and of course the traffic was awful everywhere, adding to my time pressures) and discovered that there was no space there either. Of course, sunny disposition or no, by this time I was really getting steamed up…I had been putting up with traffic, insane queuing systems, no spaces, few disabled spaces and just nowhere to park at all! In fact, that isn't strictly true, there was space to park, but it was up the hill - too far for me to walk and too far up a steep hill to use my chair without help. It was at this point I did what any sane person would do and phoned hubby. The conversation went something like this:

"Aaaaarggghhhh!!!! Blurgle, scream, car, aaargh, sniffle, parking, groffle, hill, waaahhhh!!...."

Hubby was at a loss for words in the face of someone plainly displaying all the signs of having a fit of the 'screaming ad-dabs^*2'. He did his best though and tried to remain calm despite not really needing an insane woman calling him up, just to that she could yell down the phone at someone, anyone…please…?

Anyway the upshot of it was that I drove back home and then ordered a taxi to get me to the hospital (how nuts is that?). I got there fine and in time since the MIL's appointment was delayed (aren't they always?) and was there to go in with her through her tests, which she was grateful for. I also discovered that the reason the car park was so full, was not that there had been a major incident in the previous hour, but in fact, parking in the hospital car park has recently become free to all. It's intended to be great if you're a patient, but apparently its also wonderful for all the shoppers and office workers who are now using it because it's close to town…and free...

I was talking to hubby later and apologised for getting in such a strop - which plainly he didn't deserve, but as I put it, it was just a 'down with disability day'. Most of the time I am happy and optimistic and I just get on with life. I don't really think too much about having a disability (even though I do blog about it from time to time) - my life is, well, my life and I live pretty much the way I want to live. Sometimes though, just sometimes, something happens to just remind you how horrid it can be. When you can't walk the distance and you can't use your chair, then you are prevented from doing something that most other people out there just do. Most people would have parked at the top of the hill and walked down - I just couldn't, and so I was reminded of my own restrictions. I didn't like that at all, and so, it became one of my down with disability days….


^*1 That is way less than Tesco!
^*2 My mother used to say this all the time….

What defines me??

I have realised that disability seems to crop up in quite a few of my blog entries and I know from a poll I did a while ago it seems that many of my readers are disabled. It was after the poll that I fell to wondering if that was what defined me as a person. I think in truth, that it isn’t, but whether I like to admit it or not, I do have a disability, and always have.

As a child, I believed that I could do anything that anyone else did and I also thought I could do it better than them but I still had spina bifida. For all my grand dreams and ambitions, for all the times that I thought that next year I would have learned to run and be able to beat everyone at school sports day, for all of those thoughts, dreams and ideas, there were also the more sobering moments. There were always the times that I realised that there was stuff I just couldn’t do, I couldn’t join ballet classes when every other girl in school did and school rounders and athletics were a no-no. Now, it may be that all you people out there reading this say well, I was useless at ballet or couldn’t hit a ball for toffee, but I think what I am getting at is that at least most people have the opportunity to try.

Now, don’t get me wrong in all this, I’ve done well and never fancied rounders anyway and I know that because I learned to walk, I managed to do all kinds of things that some other people never get chance to do but there were always limitations. In fact, just that expression, “learned to walk” speaks volumes. Why shouldn’t I learn to walk? Most parents don’t proudly state – “Oh, little Johnny is so clever, he learned to walk!” – learned to play the violin, yes, but walk? No, they just don’t expect to have to say it, do they?

So there you go, like it or not, I have a disability. It has stopped me from doing a few things but has prevented me from doing very little that I set my mind to. I believe that what therefore defines me as a person are the things I like to do, the people I like to spend time with and the way that I like to live my life – I just do all these things alongside the way I was born...

Some thoughts on wheelchairs.

I apologise in advance for the length of this post and the philosophical nature of it all, but hey...it's been raining and somehow that gets you thinking about deep and meaningful stuff...

Last weekend, I was at an airport and it got me wondering about wheelchairs. Now, this time, I was with a single friend, but normally I am in my chair with a bunch of other people – themselves largely wheelchair users. There’s a group of us, some full time chair users (like E2O), and some not (like me), but all of us relish the freedom that a wheelchair gives us. In an airport it’s the difference between being able to go to the shops, nip to the loo, head out and look out the window, nip back for coffee and then get to the plane feeling fine. The alternative to all this is – arrive at airport, find somewhere to sit down, struggle to boarding gate picking up coffee if you pass one then sitting down at the gate to wait (probably in pain) having hopefully found somewhere to sit down on the way, if you need to be at Gate 103. Hmmm, which would you do then? Which is better, which gives you more independence – more freedom, less pain?

It sounds an easy answer doesn’t it? So why are people so determined to struggle in these situations? What is it about the human condition that makes us say ‘at least I can still walk’ – ‘I can manage!’ Manage, yes, but at what cost? This has been a really hard lesson for me to learn, but I wish I had learned it years ago and now when I look back I think that I was stupid in some of the ways that I struggled to keep up and made myself stay on my own two feet just for the sake of pride.

Wheelchair dancer wrote some stuff on this and she commented on the way that people seem to regard a wheelchair as robbing people of their independence and I hope she doesn’t mind if I cut and paste....

The saddest thing for me is, however, the bog standard wheelchairs. Have you ever noticed that no one who does not own a wheelchair to begin with ever pushes themselves? The chairs are heavy. Yes. So heavy .... I know they're industrial. They're supposed to be functional for everyone. But they aren't freedom machines. They aren't independence devices. They are transport things, designed for the pusher. Everyone in them has this kind of blanked out look.


This is so true – once in a chair people seem to expect to be pushed. They become one with the chair and not in a good way. They are the chair – the chair is a symbol of being incapable, of being abnormal and yes, that is really sad to be that way.

I find that I say to people that I hate my chair when it sits in the corner of my room and looks at me, telling me that I am disabled but I love it when I am in it. I love that freedom. I too am part of my chair (or it is part of me) but I love it. It gives me ‘legs’ that work properly, it gives me speed and balance. It helps me manage my pain – I can go further, I can go faster, I can carry things – it gives me so much I can’t begin to explain...

The inevitability of change

After a recent conversation with hubby I began to wonder about the way that our lives change over the years.

Nothing ever stays the same, does it? Pets and people grow old (hopefully) and die (sometimes too young). Your health waxes and wanes – even if you just feel run down or pick up a cold in the winter. New technology means that we buy the new TV or camera that has made our old one obsolete and our cars get rusty and prone to breaking down. Actually, that last point isn’t strictly true with my car, it’s old but not too rusty and doesn’t break down – it does however make weird gurgling noises when it rains and the rain gets in thorough the sun roof and gets trapped in the ceiling....but I digress....

Hubby and I were talking about how your relationships change as your time together evolves. When you are young and in love you spend all your time together. For much of the time you are joined (quite literally) at the hip and even outside of that you spend every waking moment together or calling each other. Then life just seems to take over and for many people children happen. Their lives are suddenly transformed into providing a nappy changing, feeding and onwards to taxi service. The couple don’t spend so much time together, they spend it with the children...(we by-passed this and moved onto the next stage (having no kids!)). Then, the kids leave home and the couple want to do all those things that they didn’t have time for when the kids were occupying their time. Much of their time is spent with work and the social life attached to that, some of them join clubs and societies and have ‘a life of their own’ and as a couple they end up spending no more of their time together than they did when the kids were around. Maybe they even spend less as at least they did things as a family when the kids were small...

Time marches on (as it has a habit of doing), something else becomes obsolete and needs replacing and then the mortgage is paid off and it’s time to retire from work. Guess what happens....the couple end up spending every waking moment together again, just like they did in the first flush of love. Isn’t that amazing?

I suppose what I wondered the most about all of this, is that although those changes are bound to happen, sometimes we don’t like the way that time keeps moving on, forcing us to get ever older and making us continually adjust to stuff. But, it’s how we cope with that change that makes us who we are. Should we move forward kicking and screaming, should we be depressed at the passage of time or should we go forward always looking back with regret at what has passed? I don’t think we should do any of those – I think we should look to the future as an undiscovered country – yes it will always change and yes, I will get older, but life is just like that. Since purple is my favourite colour, I guess I won’t have any issues about wearing it when I get old either!

A body full of potential

I recently ran into a friend of mine (while out shopping) and he asked me how my hand was. Now, this was because I recently had an unexpected visit to the accident and emergency department of my local hospital with a hole in my hand and whole bunch of carbon splinters decorating it. As it turns out, my hand really wasn’t so bad, but news spreads pretty quick (especially when folks think it’s gory) and he was worried.

“Look” I said, waving my hand under his nose, “it’s not so bad, I’ve just got a sticking plaster, that’s all.”
“Dur”, he said (please note the local dialect!) “you’re hard you are....but then I guess you’ve got to be, living in your body!”

Now, that got me to wondering about this body of mine and how good or bad it is. Now, I don’t mean how beautiful (or not) that it is – after all, like most women, there’s bits of my body I like (my nose is OK) and bits I don’t (who dished out those knees for goodness sake!) but what I mean is the working-ness of it (if there is even such a word!).

There are some times when I don’t like my body at all – the times when I wake up and it doesn’t work properly, the times when I have to lift my leg into the car rather than merely helping it in because its quicker and the times when it just hurts way too much and I think that it isn’t really fair. It’s those times when I guess you do have to be just a bit ‘hard’ to live inside it and put up with all those things you’d rather not.

But (and here’s the thing) most of the time I actually think my body is rather wonderful. My wiring in my legs is all wonky and when I was born my parents had no way of knowing if I would ever walk. Doctors are still amazed that I ever learned to do so and despite the fact that many things have gone wrong with it over the years, it recovers and mends and gets on with stuff. More than anything else this funny body has helped me reach for the stars and has achieved amazing things. It has allowed me to explore a future I never thought I would have and has allowed me to fulfil my dreams and even has potential to achieve even more in the years to come.

So, am I hard? Or has my body really helped make it rather easy for me?

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?

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!

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!