I don’t have 24-hour care, so my alarm is set to coincide with my carer, Karen, arriving at 7am. Karen’s been with me for a few years now and we’ve got a good system going. She always makes me a cup of tea and she’ll have the shower chair waiting at the side of the bed. She lifts me into the shower chair and then I go to the toilet. I have to be lifted on to the toilet but, apart from that, it’s just the same as anyone else — pop my knickers off and I’m rocking.

I get showered, dried and dressed in the shower chair, then a hoist lifts me into my motorised wheelchair. Dressing me can be a bit of a problem. Jeans are tricky — someone has to spend ages rolling me round on the bed like a Barbie doll. So I tend to stick with long skirts.

Spinal muscular atrophy, SMA, is a neuromuscular disorder. Basically, the movers and shakers in my spinal cord don’t chuck out the right signals to make my muscles move and shake. I’ve got full feeling in my limbs; I just can’t do much with ’em. I can just about manage my hair and make-up, and I can wiggle my legs, but there’s no strength there. I can’t even hold a book to read in bed. It’s a genetic disease. About 1 in 40 people carry the gene, but it’s only a problem if two people with the gene have kids. Even then, there’s only a one-in-four chance a kid will have SMA. My parents chucked out two: me and my brother Johnny. They had another kid too, Martin. He’s able-bodied, as are my mum and dad.

Karen leaves at about 9, but I’m in my wheelchair then, so I’m fine as long as there’s a glass of orange and cranberry juice and a yoghurt in the fridge. Up until last year I worked for the BBC, but I took a break to concentrate on the show I’m taking to Edinburgh. Acting is something I’ve always wanted to do. I wasn’t sure what I wanted to do a show about, so I decided to write about my life. All the stuff that’s happened to me. Most mornings I spend writing on the computer. Only two fingers on each hand have any movement, but my typing is pretty good.

I have to be careful about what I drink, because my next toilet break isn’t till 12.30, when Karen comes back. It’s bloody frustrating. When I was younger, I could hold it for about 12 hours. I’ve been caught short a couple of times. All I can do is get on the phone to somebody: “Get out here! I’m in trouble!”

After Karen’s gone, I’ll have something to eat. I’m all right doing my own lunch, because I had an oven fitted at the right height, but I’m not good with cutting things up. That’s why I stick to things like fish and pasta. Sometimes I fall back on Marks & Sparks lazy-bastard meals. In the afternoon, I’ll pop out to see friends or do a bit of shopping — I spend half my life in Jigsaw. I like Sainsbury’s too. I can zip round with a basket on my knee. I’m very fortunate to have a car that’s been adapted for me. I roll into it from the back and control everything from a little computerised steering wheel. I just have to be careful about parking. If anyone’s parked behind me, I’m screwed.

I’ve always been pretty good at doing stuff for myself, even when I was married. I met this guy when I was 20 — he was 18 — and we were together for 14 years. We split up three years ago because, well, I suppose we wanted different things. It was nothing to do with the disability. I just felt there was more to life than sitting in the middle of England.

Obviously, life was a lot easier when I was in a relationship. I didn’t have to rely on the carers as much. Dealing with the split was almost harder than being born with the illness. I didn’t even tell my dad for three months. I didn’t want people to feel sorry for me.

I like to have friends round for dinner and I still sometimes go to a club. I’ve never been much of a drinker, as I’ve got to be with someone who can take me to the toilet. Actually, clubs can be a bit frightening — being in such a crowded place. Sometimes you get blokes who crack the old jokes: “Just the right height for a blow job, love.” I just smile and say: “Not in your wildest dreams, mate.”

Being in a smoky room used to be awful — I don’t have the muscle power to cough properly. Chest infections kill a lot of people with SMA. That’s what finally got Johnny: viral pneumonia. He died a couple of years ago. He was 36, younger than I am now. I didn’t know much about SMA till Johnny died — he went to all the conferences. Now I’m finding out a lot more, because I’m doing a fundraising show for the Jennifer Trust next year — they support parents of kids with SMA.

It’s a cliché, but you just have to get on with it. I’ve never been what you’d call depressed, just the odd off-day, that’s all. I think I’ve been dead lucky. I had 14 great years with a brilliant bloke, I’ve lived in New York. I’ve met Leonardo DiCaprio and Will Smith. It’s all in the show: you meet everybody — all played by me.Unless friends are helping to put me to bed, I have to be back for Karen at night. We have to do a few checks before I go to sleep — go to the loo, wheelchair on charge, lights off, phone by the bed. I sleep on my back with a pillow under my legs, otherwise they flop to one side. I do dream but, bizarrely, I’m never in a wheelchair. I’m always dancing or having sex. And not just wham-bam-thank-you-ma’am. Let me tell you, what I lack in movement I make up for in vocal ability.

Rolling with Laughter is at the Edinburgh fringe festival until August 27 (www.rollingwithlaughter.com )

Interview by Danny Scott. Portrait by Gary Calton

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