Saturday, April 30, 2011

BADD2011 Blogging Against Disablism Day

So, BADD has been going for long enough now that I feel vaguely guilty that I have never contributed and this is for 2 reasons:
A) I have a disability and
B) I have a blog

The thing is, do either of these things actually qualify me to speak 'for the disabled' - in fact, on that subject, who are 'the disabled'? Are these disabled people we are talking about, individuals, with hopes and dreams and likes and dislikes, or are the disabled some kind of sub-group of society who are all somehow rather alike - joined at the hip by a shared set of values and needs? Well, let me give you a couple of examples from my day today....

First thing that happened was that I saw a friend. He has spina bifida but you might not realise it to look at him - sure he has a bit of a limp, but it's so mild that you might out it down to poor posture. He is a great guy, loves Iron Maiden and has the maddest hair I know. Despite his disability, he helped me unload my car, which was very sweet and earned him a cwtch. Within a few minutes I was grabbed by a lovely lady I know who is deaf - she is mad keen on cars and has just had her (long) hair cut short - we spoke about her new hair and new job - her hair isn't mad in the slightest and I don't think she goes for Iron Maiden at all. After talking to a few able bodied people, I talked to someone temporarily disabled by a torn leg muscle - she was using a stick and was having to sit down a lot - we compared notes on painkillers and talked about dogs (which neither of us own) before I started chatting at lunchtime, about gardening, with a full time wheelchair user. I saw a lady I know a little and said hi - she has tunnel vision and is registered blind - I don't know a lot about her, but I am guessing she's not an Iron Maiden fan either!

So, we have different likes and dislikes and are affected by different disabilities too, disabilities which make us full time chair users, stick users, hearing aid users and guide dog owners. Its true that our common thread is that we all have a disability - we are all people with disabilities. The only thing I know that links us apart from that blanket description is that we all have good and bad days. Now I can hear you all saying that everyone has good and bad days and of course, that's true, but imagine that being completely able bodied and fit and beautiful, sexy and intelligent is 100% (nope I don't know anyone like that either!) - anyway, try and imagine it...So, if you are fit and able bodied you operate at 100% - maybe if you have a bad day, you're suddenly operating at just 80% - so not great. OK - let's take my disabled friend with the spina bifida - he's probably only 80% to start with - if he has a bad day, he drops down to 60%, which is only a bit more than halfway to great - and that doesn't sound great at all. The thing is, he's a top bloke - he helped me unload my car after all - and he doesn't complain, so he's suddenly down to 60% and he hasn't said a word about how tough that can be. So, that's what I think 'the disabled' have in common, they start on the running track with their blocks set behind everyone else's, to start the race of life. It's what is often missed by people who assume that a hearing aid or a wheelchair levels the playing field when in fact it doesn't - it doesn't make up for the 20% (or more) that you're missing - it just makes it a bit easier to catch up than it would be without it.

I hope all of this makes sense and doesn't just sound like mad ramblings. It's late after all, and I hit my 60% some hours ago...

Tuesday, April 19, 2011

Spiny Norman

We have a hedgehog! Actually, I don't know if that's true as I am not sure if having a hedgehog visit your garden actually counts towards your ownership of it. A while back we had two hedgehogs who came in and shuffled around the base of the pond, where it's damp and full of slugs, and then disappeared again. At the time I couldn't figure out where they came from as we have quite an enclosed garden...that was until the day I came home to find one of them run over in the road outside. I guessed then that they had come from the park opposite and were just nocturnal visitors, out on a bit of a jolly - until the sad day when it all went horribly wrong for them and a tragic accident (leading to the running over of hedgehog number 1) ended their nighttime frolics. That was the end of the hedgehog visitors...or so we thought...

A week or so ago we were out in the kitchen and the security light went on out the back of the house - we looked out and there was a hedgehog, running round and round in circles, on our lawn. Why the running round in circles I don't know, it may be a hunting thing I guess, but I wondered if it was hedgehog Number 2, still distraught at the loss of hedgehog 1, still running round frantically, either trying to find it's mate, or just squeaking and wailing in grief.

That hedgehog came back the next night, and the next, and the next. He came back so frequently, running round in circles and setting off the security light every 5 minutes (and I'd like to take this opportunity to apologise to my neighbours on the hedgehog's behalf) that hubby started calling him Norman - after Spiny Norman don't you know! Anyway, it's funny the way your brain works sometimes (it's even funnier the way my brain works!) and somehow, I started wondering about Norman...

I was already wondering about the running around (and possible squeaking) but then I got to thinking about where Norman lives. I mean, back when they were hedgehog 1 & 2, they lived in the park, so I'm guessing Norman doesn't actually live with us, he just visits. But, and here's the mystery, how does he get into our garden at all? We have gated side access, so no entry there and we live on a hill, with walls either side of the garden. Unless Norman is about to win prizes for high jumping (can hedgehogs jump?) he's not getting over next door's fence (it's 6ft high!) or over the wall on the downhill side as the height of the wall + the change in level is definitely too much. Hubby suggested the only way he could do it, would be to jump down from the uphill side as the wall is at ground level for them and about a 3ft drop into our garden - that's definitely do-able. The thing is, he then needs to get into next door's garden so that he can do the drop down thing - and they have gated side access too. They are the end of a terrace so next door to them has no side access at all - and of course they are still on the hill, with the uphill/downhill problem thing and the same wall issue....

We thought this through....for some time. The conclusion is this - Norman is plainly very energetic. He leaves his home in the park, heads uphill for the end house, goes around the side of their house, under the gate with the convenient gap under the bottom, runs round in circles on the lawn (squeaking?), jumps down from the wall into the next garden, runs round in circles on the lawn (squeaking?), jumps down from the wall into the next garden, runs round in circles on the lawn (squeaking?), does this for 6 houses until he reaches our house where he does the same, with the added excitement of setting off the security light, then carries on down the hill, alternately jumping running and squeaking through another 10 gardens until he gets to the bottom of the hill, where he heads out of their rear access, into the lane, pops round the corner, up the pavement, across the road and back to bed for the day, too exhausted for anything else!

Of course, all this could be idle speculation and maybe Norman isn't energetic at all and just lives in the bushes at the side of our garden...what do you think?

Friday, April 08, 2011

On pain...

Every so often I write a blog entry on pain or at least I think about doing so. I guess it's not surprising, since pain is a part of my life, not a pleasant part, not a good part *1, just a part and it's a part that I just have to get on with. Ironically, it's the 'just getting on with it' that makes it difficult for others to really see or appreciate. My normal response to "How are you?" is (as cheerily as I can manage) is "I'm fine!" Probably not the most helpful answer for hubby who is trying to judge how up for anything I am, but it's really the only answer I know how to give. I see the alternative as providing the listener with a list of my woes, which bits hurt worse today over what and just how many drugs have you taken today?!

That's one of the things that people don't see - the drugs...those wonderful little pills that keep me going day after day after day. There are the orange ones that keep the nerve pain*2 in my leg under control and then there's the codeine based stuff without which I don't know what I would do to manage. On top of that there's all the other stuff, the heat packs, the special comfy chair and, of course, the regular physiotherapy and treatment. People don't see this behind the veneer of 'I'm fine!', but nor do I really want them to. I want them to see me as a strong capable and independent person and I don't want the almost inevitable sympathy that comes with 'Oh, it really hurts...'

Anyway, I am sure you are all wondering why I decided to write this today if I've been 'meaning to do it for ages'. Well, as in all things, something triggers you to do so and in my case it was a conversation with someone recently who was telling me what a high pain threshold they had, but a recent condition had left them in agony. They had never had a painful condition before and I couldn't understand how they could determine their level of 'pain threshold' without having a standard of comparison. I also felt that they were trying to compare our levels of pain, like schoolchildren saying that 'my dad's bigger than yours!'...'my pain's worse than yours'...By contrast, I was talking to MIB who I know struggles silently in much the way I do - both of us straying away from 'Fine' occasionally to say 'I'm just a bit sore today', or 'little bit achy, you know...'

There ought to be a universal scale of pain, didn't there, like the Beaufort Scale for wind. The only problem there is that the Beaufort Scale was designed to be used without any instrument recordings, so I guess it's all a matter of opinion then...which is all that pain is. It's a strange thing really - I can't tell you if I hurt more than you, because I can only feel my pain, I can't feel yours and, funnily enough, you can't feel mine*3! The idea that there is a 'threshold' at all, seems an odd thing to say in circumstances where there is no way of directly comparing anything. Anyway, as I said before, it's all very strange, but I do think something needs to be done. I remember when I was in hospital, the nurses kept coming round and asking me how my pain was on a scale of 1 to 3 - with 1 being no pain, and 3 being agony - I kept saying things like, "Um, 2 and a quarter?", which was really not much help to them. I just don't think 3 levels is enough somehow grin

I think this should be left with me...I'll give it some thought and come up with my very own USOPA...*4...just watch this space...

*1 I don't have those kinds of tendencies!
*2 So much for being airily reassured after my surgery that that would disappear after 6 months, oops sorry we meant a year, ah, it could be two nauseum...
*3 Ooops, that came out bitchier than intended... wink

*4 - Universal Scale of Pain & Agony