All the answers to questions you know you shouldn't ask, but really want to anyway...

This is a bit like the 'is it ok' thing on The Last Leg...

Yeah, it is, only I can say cunt and they can't say that on TV.

So - fire away then, this is your one shot to ask alllll this stuff you want to, because I won't be answering it again!

How come sometimes you are in a wheelchair, and sometimes you use a stick, and sometimes you use a mobility chair and sometimes... you use none of those things! I think maybe you are just weird, or faking!

Not all disabilities are 'static' (in fact, most aren't) - that means lots of us, well, certainly me and people I have spoken to, experience varying levels of disabledness (I made that up. Go me) on a weekly/daily/hourly basis.

Sometimes I can walk a short distance - sometimes I probably shouldn't, but my stick is somewhere else, I can't be bothered to go find it and I think wellllllll I probably wooooon't fall down in the 15 ft from door to car... probably. Sometimes I've been wrong about that.

Sometimes I can barely put one foot in front of the other, carrying my own upper body is hard and I struggle to breathe as well as struggle to stand up and move. Falling is therefore much more likely, so I'd like to avoid that if possible, I'll use my stick, or chair, whichever is most appropriate.

So - whats wrong with you then?

You want the full list? Can I have a full list of what's wrong with YOU? Because hey, no one's perfect!

On the other hand in the spirit of having people understand that disability is NOT just about spinal injuries or missing limbs (sorry guys, you seem to be the poster-folk of disablity, you probably get a prize for that.) I will elaborate.

1/ I have a connective tissue disorder - it is most probably Ehlers Danlos Type 3, but thus far my Rheumatologist doesn't see the point in giving me a 'label'. Gee thanks.

This condition means my joints bend past the point they are supposed to, in my case it means my spine bends more, my hips, knees and ankles all have a far far greater range of movement than they should. My fingers and shoulders do too.
This in turn means that standing and walking and balancing requires a lot more effort to do, which is really tiring.. and now I move you to point 2...

2/ I have left side heart failure. The blood does not all go to my lungs, pick up oxygen and whizz round my body. Some of it goes back into my heart which is inefficient to say the least. My lungs fill with fluid too, which doesn't help.
The overall effects are somewhat like having altitude sickness... permanently.

Now refer back to point one - everything I do is that much harder to do because of the bendybendy.. and my heart struggles to cope with normal shit. So that extra work, on top of 'normal shit' makes life even harder.

3/ Getting to the more minor things now - I am hypothyroid, which I wouldn't normally mention because hey, a lot of folk are. But hypothyroid means you don't have a lot of energy, and normally thats treated by thyroid replacements...

But wait, I have a heart condition, and I particularly have to avoid upsetting my ticker. The thyroid replacements can unfortunately, upset the ticker (cause tachycardia), so I don't take enough thyroid replacement to actually fix the thyroid problem, in case that happens. I just take enough to 'take the edge off it'.

In summary - all these things mean - I am bloody knackered, most of the time. The knock on effect of these things is I suffer a lot of joint and muscular pain, spasms, cramps and falling down. Sometimes it also affects my ability to think clearly and make decisions (and I don't mean life changing decisions, I mean 'what colour loo roll shall we get this week' type decisions!).


I need on average around 14 hours a day sleep, plus naps - but I can't sleep that long because I get serious cramps and spasms and pain if I lie down that long.

I could take lots of heavy duty painkillers - sometimes for a treat, I do - but they render me how shall we say.. off my freaking tits. Which is not conducive to doing anything Useful.

So, if I am a little crabby or short, or snarky - now you have an idea why!

So, well, um. You don't look disabled!

You didn't look like a total cock at the start of this conversation, but appearances can be decieving!

Ouch! So, going back to the painkillers, does it matter, you are a cripple after all, what do you need to do!

Well, I  need to work for one thing - in fact, I have three jobs. Yep, three. I am self employed because I can work, and I want to work... but I can't work long enough or reliably enough for someone else to employ me. Which sucks, but I can understand their position!

Being self employed means that to a certain extent I pick my hours, I can take a break, or a nap, no one gets freaked out if I vomit in the workplace without warning or suddenly wobble off shouting CODE BROWNNNN...

Being self employed also means that even when I am not at work.. I am at work. It also means I don't earn very much at all, and if I am too knackered to work,  I earn nothing.

Doesn't the government pay you to stay home - I read in the Daily Mail that they give you people £30K cars and hundreds of quid a week if you are disabled.

Wellll. No. The government, well the Department of Work and Pensions give's me around £500 a month. Half of that goes on my lease hire car, through the motability scheme. It is not my car, if my benefits stop, the car goes away. Byebye car.

I currently get Disability Living Allowance, which is to help me pay for all the things I need due to being disabled. For example, I need a car big enough to put scooter, wheelchair etc in, and I need that car to go to work, to the shops etc, because I cannot use public transport.

DLA (and PIP which will replace it, eventually) is not an 'out of work' benefit - it is not means tested, it is paid according to how much a disability or illness affects you and what your needs are according to that. Allegedly.

If I don't earn enough money being self employed, that is all I have to live off each month. I currently survive being helped by my family - I am incredibly lucky that they can afford to do that.

What does 'widdling diddling' mean?

You need to listen to some Ian Dury!