Tag Archives: disability

Learning the hard way, or at least, the cold squelchy way…

Not that I’m melodramatic or anything … mwahahahahargh!

This holidays, McOther, McMini and I joined another family of friends skiing. I have never been skiing before, for the simple reason that from the age of about twelve I’ve been under doctor’s orders not to.

Some of you will know this, some won’t, but basically,  my knees have taken a bit of a pasting over the years; bone disease as a kid, torn ACL after jumping over a wall aged 25, and then twenty years later, a ‘possible’ tear in the other ACL (MRI ‘inconclusive’) after I rode my bicycle blithely across what I thought was an empty street and was surprised to catch a slow moving Ford Fiesta in the back. Not their fault I genuinely hadn’t seen them. I’m just lucky they saw me.

The net result of all this – apart from the fact the knees now match – is arthritis. First knee was knackered pre ligament reconstruction and arthritis is the natural result of soggy knee ligaments. The second knee is so arthritic after 25 years of taking the extra weight that even with an unequivocal MRI result, it’s probably reached a stage when reconstruction would make the arthritis worse. Which is why they can’t do the original, of course. The ACL damage doesn’t hurt but the arthritis in the knees does. Eight years ago they told me that were I sixty, they’d fast track me for a left knee replacement because it was so bad. Alas bionic knees only last 10 years, and you can only have two so no can do until I’m sixty. Oh well. Only another 12 years to wait.

So here I am. Aged 48, with knees that are, frankly, a bit fucked. A lot more fucked than they were when the first doctor ordered me to stay off the ski slopes. But, for the first time, I was in a position to try skiing somewhere that it wouldn’t matter were I unable to go piling up and down the slopes all day, because there’d be other stuff to do. And McOther is an excellent skier and McMini wanted to try it.

So, ever the adventurous one, I bought some huge knee braces like scaffolding, packed a HUGE box of aspirin and off I went. Here are some of the things I learned:

Spring in the mountains is hot.

No shit, Sherlock? I hear you say. But yes. I was thinking snow=cold, mountains=cold.

Schoolboy error.

It is is not true.

Here in Blighty we bought ourselves lovely thick warm coats to keep out all that cold mountain air. It does get cold but only at night. Also, as a novice to skiing I was tense, partly because it all happens a bit fast and partly because the feedback through my knees is less than sharp and I had an uncomfortable feeling, after waiting for 30 years and through a great deal of deterioration to flaunt doctor’s orders, that I was about to die at every turn. Rank fear aside, this is the kind of exercise that pushes your beats per minute up to one seventy something until you learn to do it properly, stop fighting and relax. Now even if it’s minus forty out there, beats per minute of one seventy plus is only going to mean one thing: a flop sweat.

But it wasn’t minus forty. Spring in the mountains is gorgeous; clear blue skies, lovely sunny days and temperatures of eighty degrees Fahrenheit (twenty something centigrade). Now if you’re going to do high intensity aerobic exercise in those kind of temperatures, take it from me, you’re going to get hot in a t-shirt and running tights. Thick gloves, huge woolly socks and clothing that is, essentially, a duvet, waterproofed and crafted into Michelin Man style duds is … less than comfortable in beachwear temperatures. To be frank after about ten minutes, it was not so much a coat I was wearing as a portable, always-on sauna. I didn’t know it was possible for a human being to sweat that much or for a t-shirt to become sweat sodden enough to wring out in ten minutes. So here’s an interesting discovery. It is and it can.

Nice.

You will discover new things.

Let’s talk about gloves. At these temperatures, your ski gloves will become very hot inside. So hot that you will discover the new and unnerving phenomenon of hand odour. Yes, put your hands in warm gloves and let them sweat profusely for three days straight and your gloves will come off soaking wet at the end of each day – sod days, in my case it was an hour and a half, tops. Even so, after 3 days they will smell like the rankest socks imaginable … until you smell your ski socks after a day in those hired boots and realise your imagination hadn’t even scratched the surface of the concept that is, ‘rank’.

These boots are made for walking.

I have many pairs of in line and roller skates and the boots are similar to ski boots. The rationale is that if you fall awkwardly you will break your legs, mid shin, rather than doing potentially crippling Potts fracture style damage to your ankles. The same rationale is behind ski boots. Only not. Ski boots were invented by the Spanish Inquisition in the eleventh century but shelved after they were deemed too inhuman a torture to inflict on mere heretics. A few hundred years later and here we are resurrecting them to protect ourselves from breaking our ankles. They are very good for this. And for skiing. But when the snow is melting, you also have to do a lot of actual walking in them. They are less good for that.

Walking in ski boots is clearly an acquired art. As far as my efforts went … hmm … well … let’s be generous and call them, ‘a work in progress’. People who have mastered the art have a kind of slowed down gait that’s a cross between a 1970’s disco swagger and someone walking on the moon. It involves putting all the weight on the most painfully arthritic bits of my knees and every walk was unspeakable.

There are many different types of snow.

Yes. This is so. And ALL are scary. I confess on the first day we thought we’d ski down the small looking hill to where our lessons were. So off we went. I snow ploughed as I’d been taught to do, a sure way to slow me to a stop and … ah … hang on … not stopping … at all. So I bailed and yes then I walked down the slope in those infernal boots. I was sweat soaked and knackered before I even got to the ski school. Because it was ice. And very slippery.

Skiing is fun … sort of.

Like that Scandinavian thing, is it Stockhausen syndrome? No, I don’t think so? Stockholm Syndrome? Possibly, that thing where you grow to love your kidnapper/abuser. Yeh, well, it was a bit like that. I didn’t like it to start with because, to use a technical term, I was shitting bricks. I was in a complete funk, most of the time, and when I say funk, I mean in the fear sense of the word as well as the smell. Then on the third day, suddenly, I relaxed. Not much, but enough to realise how people did it all day. They were not super-fit, just super-relaxed. My fear levels reduced a tiny bit as I began to feel more in control, beats per minute dropped to about one fifty and recovery time shortened to the point where I could do a run without stopping. Suddenly I got what the fuss was about and why people do it, which, I confess, I expected to do much earlier.

The great thing about it was that the actual skiing bit doesn’t hurt. Not at all. The time it hurts is when you stop. So that Wednesday, I even tried to go skiing with the others but realised, as soon as I got to the top of the mountain and put my skis on again, that the dicky knees were not up to more than an hour yet. So we had lunch up there and I crept home to the chalet and made full use of the spa, oh yes I did.

Will I be going again?

Amazingly, yes. Although I will try to manage my knees better this time.

What did I learn?

I learned that I am disabled. Genuinely, physically handicapped in a way I hadn’t actually grasped until I tried to do this. I have not been able to run for some years. There’s a reason for that. Days one and two I cried a lot. I cried because I was stiff and I cried because I knew, from the pain in my knees, that they were far, far more comprehensively fucked than I have ever given them credit for. The pain levels were about commensurate with the second week after I cracked my collar bone. So I had to take a long hard look at myself and accept some very unpleasant truths, one being that I may well end up in a wheelchair for a year or two before I reach the magic age of sixty and access to a NHS knee replacement comes. Because they seem intent on my having quality of life while I’m old, rather than now, while my boy is small. Me, I’d rather do the wheelchair later on but the NHS demurs. Another thing I learned then. If I carry on the way I am, I will be even more disabled. Soon. I will never play football with my boy, or any of the other things I still hope to do.

That was sobering and pretty grim.

IF I carry on the way I am. But there might be a get out.

So, before I ski a second time, several things have to give. I read somewhere about a thing called spoons. Run with me, I’m not talking sub duvet snuggling. It’s a way of explaining a disability. So the idea is that you have say, ten spoons each day and they represent your physical capabilities. Every time you do something that takes you over a certain level of pain/exertion/your disability you count it as using up a spoon. So you can do, pretty well what you like, but you have to ration your spoons so you can get through the day. If I have ten spoons in a day, an hour’s skiing is about seven. So I need to do two things. I need to balance it against the other things I do in a day and I need to find a way to extend the range of each spoon.

Next time I go I will be a better more confident skiier so a skiing lesson will use up less of my energy. That will help. However, because of the pain that comes after I’ve been skiing, I will have less spoons free each day, as the consequences of skiing build. I will also have to keep my eye on what happens afterwards, which I didn’t this time, which is how I ended up with a fair amount of pain and walking difficulties, which aren’t going to go away anytime soon – about three weeks, I reckon. In short, I need to make everything last longer, so I can ski more with less pain.

Back to the get out.

Over the past three years, I have been doing physio and going to the gym to try and keep myself physically fit and able and to prop up my knees. That’s good and it’s worked but, of course, I am also menopausal, which makes for a hard time losing weight. I’m also busy, which makes for a hard time losing weight – nothing causes a person to eat crap more effectively than their not planning their meals. And I have IBS, and nothing causes an IBS attack more effectively than changing your diet … except the 5:2 which is OK but gives me a mega headache.

Never mind. I’ve put on a stone of muscle under the same amount of flab as I had before. It should raise my metabolic rate but pre-menopause that’s less likely and I have to accept that it isn’t happening to the extent I’d like, or possibly at all.

So what I realised, through the medium of skiing, was that this extra stone could well be what has tipped my knees over the edge this last year.

Menopause, schmenopause, IBS, IB bollocks, this is not a drill. My back is against the wall. I have to lose weight or lose my ability to walk. I know this sounds melodramatic but that, in a nutshell, is it.

Not just a bit of weight either, a lot.

A whole effing stone. And to be honest, a second wouldn’t go amiss.

That’s going to be hard but the alternative: registering disabled, enduring a genuine physical disability, some impressive levels of physical pain and gradually losing my ability to walk without a rollator or sticks and while there is hope that I can avoid that before I hit 70, by any means possible, I’ll do whatever it takes.

So hurling myself down a mountain was a bit freaky but it wasn’t the daunting bit, not really. The daunting bit was the cold hard truths I have learned about myself.

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Underground, Overground, Wombling Free…!

It’s a long time since I wrote anything on my blog. There is a reason. It’s because Real Life has been quite hectic. Worse, it’s been hectic in a way that has meant that I need to write to stay sane. That’s where I’ve been. Writing, and driving 130 miles to Sussex in the middle of the night to accompany one parent to hospital while a carer stays over and looks after the other, then doing the full care package for a day and dealing with all their heating and the cooker being turned off due to a gas leak on one and a half hours’ sleep… that kind of thing.

But now I’ve just finished half term week during which I was compelled to leave my characters to their own devices and interact with Real Life. So here I am, sorting some bits of real life out before I go back to my routine of not very much time, but a bit more than before, and a lot more of it spent writing. Also, my parents are on a more even keel now, so the desperation with which I escaped into my made up world is not quite so marked.

As you probably know, both my parents are in their 80s and they need a bit of help. To that end, I’ve been trying to get some disability aids out of Social Services for them. It’s not that social services won’t give them, just that it takes ages. There’s one particular thing called a ‘perching stool’ which Mum could really use in the kitchen, right now. But there’s a 20 working day waiting time before they can even call you back and start the process. I have been wondering if I should buy one – if Social came up trumps with a second I could always put the bought one in the greenhouse for her. But I was havering, because they cost a sod of a lot of money, these things.

So imagine how insanely chipper I was to discover this bizarrely obscure item in a skip this morning, just outside my gym! It was brand new and it wasn’t alone. It was in there with three other disability aids: a riser loo seat for people with dodgy hips which was still wrapped in its plastic and a really handy trolly-cum-walker with two shelves for trays. All had labels on with a number to call for collection after use, so at the least, I thought, if Mum and Dad have no use for them, I can ring the number and get them back to people who need them. Anyway, I had to take the trolley because it was the only way I was going to get the stuff, plus my bicycle, home. So, with the help of three of the ladies who also attend my gym, who praised me for my Womble* like tendences, I climbed into the skip and relieved it of its disability enhancing contents.

SkipScore

If anyone had ever told me I would get excited about finding items like these in a skip I’d have told them to piss off. Luckily, no-one did. Unlike the time I said I’d never marry a lawyer and then…

It will be even more of a challenge to get the things – which are square and firm and most non-folding – from Bury St Edmunds to Sussex in a Lotus. I might have to borrow McOther’s car.

Even so it’s a bit of a result. I am, naturally, hugely chuffed to have these difficult-to-get things fall into my lap, instantly, when I never expected them to, and for free.

Mwah hahahahrgh! Sometimes the stars just align.

 

*If you don’t know what a womble is, click here the song explains it. Obviously, they are a lot more interesting when you are 7.

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