I have Duchenne Muscular Dystrophy, a progressive and life-limiting condition for which there is currently no treatment. Having been diagnosed when I was only a year old, this knowledge has always been part of my life and inevitably it has affected every aspect of my life. Since I was a small boy I have always been fascinated by nature and spent many hours in the garden trying to tempt butterflies from the buddleia into my poised fishing net so that I could examine them in detail and then let them fly free. Increasingly my disability meant that I relied on other small boys. One day when I spotted the perfect shiny prize-winning conker I had to ask one of them to collect it for me. He promptly pocketed it! Young children are not known for their selfless actions and perhaps this explains why they would never tell me where their den was or help me to get to it in my wheelchair; they seemed to be protecting it as if it was Bletchley Park.

Being excluded from normal things that my peers took for granted began to be part of my life - a pattern that got stronger as I got older. For a time, older siblings of my contemporaries filled the gap and helped me to enjoy activities such as fishing. I have always had a particular interest in fishy things, and an uncanny ability to spot an aquarium signpost in whichever town or country we were visiting on holiday. People have often been willing to talk to me and help and I feel that the kindness of strangers is often underestimated. A blond, blue-eyed boy in a wheelchair with a passionate interest in the world around him was lent a fishing fly by a stranger, given a lengthy talk on the lives of otters and allowed to touch an octopus. I have never been afraid to talk to people and ask questions, although on occasion I have felt that there was surprise that a child in a wheelchair could ask intelligent questions. Perhaps there are still too many preconceptions about wheelchair users.

Sometimes, though, I feel that mine is an existence, not a life. There are so many things I would like to be able to do that others take for granted - from the most mundane activity, such as walking to the shop, to discovering the vineyards of France. This does not mean that I am unhappy all the time and there are moments when I forget my physical situation and enjoy life - when I am making people laugh (especially my dad), when I read a good book (although someone has to turn the pages for me, a source of great frustration), or when I am in my garden making sure that my pumpkins are being watered.

Life expectancy for this strain of muscular dystrophy is commonly 20s to 30s, but this is something I prefer not to think about, although it does have an impact on everything I do. As I have become more disabled the big things in life are increasingly beyond my reach and small events assume greater importance: watching a flock of birds preparing to migrate, seeing seeds grow in the garden and experiencing the sun on my face.

The progressive nature of my condition has meant that just when I should be gaining independence and control of my life - I am now 22 - I have become more dependent and reliant on other people, mainly my parents, to do everything for me except think, and sometimes they even try to do that for me! Fortunately I have been able to receive education in mainstream schools and complete a degree in ecology at the local university. But my expectations of enjoying a social life as a student were not realised.

Managing to get to university was relatively simple and the academic work straightforward. Much more testing was interacting with other students and trying to build the social life that I knew my contemporaries were experiencing. University is where many young people make their first serious forays into the world of relationships and sex. For the most part my attempts to form friendships or even to strike up conversation were rebuffed. I felt like a foreigner in a new country, speaking a language no one understood. The idea of meeting girlfriends or even forming friendships with them, which I had hoped would be possible in this new environment, began to seem unachievable. Physical intimacy or, dare I say it, sex seemed completely out of the question. Was there something wrong with me, apart from the obvious? I began to think that I needed to explore these issues in depth with someone else, but it was hard to think of the right person.

The issue of sexuality and disability is in the main brushed under the carpet. Some of my carers have been visibly embarrassed when sex has been mentioned or shown on a TV programme we have watched together. The general public do not view disabled people as sexual beings and many professionals and family members who are too uncomfortable to address this issue openly share this attitude. Strangely, talking to people - especially parents and carers - about death and dying may be easier than talking to them about sex.

Since I was 13 I have spent weekends at Helen House, a children's hospice in Oxford, and more recently Douglas House, a hospice for young adults. In 2004, when I was 20, I decided to broach the subject with one of the doctors whom I had known from the outset and whom I trusted. I was already aware that other people with disabilities used, for want of a better word, prostitutes, or more politely, sex workers. Although I had always hoped that sex would be just one part of a close relationship, I began to accept that this might not happen for me. I wanted to know what sex was like even if this meant that I had to pay someone. I know that this is not how everyone feels. Certainly my parents, while respecting my independence and right to decide for myself, had reservations and concerns. I understood this but was not to be swayed. I began to feel that I had the right to this experience and that, since I had the ability to see it through, I should persist.

After mulling things over, I felt I had already attempted to form relationships without success and firmly decided that I wished to experience sex without fear of rejection or the possibility of spoiling an existing friendship. With the help and friendship of Chris, one of the care team at Douglas House, I knew that the practicalities would be covered. We researched possibilities online so that matters such as cost and the suitability of the person could be ascertained. Although this sounds clinical I felt that I had to ensure I had done everything to achieve my aims.

Just after I had completed my final exams at university last May, the appointment was made with K, as I will call her. Her train was late, which did not help my nerves. She turned out to be an intelligent and pleasant woman, attractive, in her late 20s and unremarkable. She was warm and easy to talk to. She was likeable, and I guess that she was used to relating to nervous people as she put me at ease. I felt that she understood my situation and motivation. The two hours passed quickly and it was, you may say, satisfactory. She left when her taxi arrived and we said, as people do, "See you again".

Looking back, I am pleased I had the tenacity and commitment to see it through. The experience, while not emotionally fulfilling, gave me confidence and a sense that I was not missing out. I did not have unrealistically high expectations and perhaps in this respect I was luckier than some of my friends who found their first experience disappointing. I regret that I couldn't be like everyone else and share a first sexual relationship with someone I knew and loved, and part of me feels that having to resort to paying a woman for sex reflects something lacking in society, not least because I know that some people disapproved of my actions. Although my family have supported my choices, I know they would have preferred me not to do this, or perhaps not to be in a situation where I felt this was my only option. I know many are likely to consider it immoral, believing that sex is only acceptable in a relationship of love and equality.

I do not think I will necessarily choose to repeat the experience, although I have not ruled it out. Sexuality is more than just sex: it is about feeling attractive and attracted to others without feeling guilty or peculiar about something that is intrinsically part of being human. A cliche, I know, but it is about feeling comfortable in your own skin. My experience taught me a lot and gave me a sense of normality to a degree. It also helped me to realise that I could make things happen if I really wanted them enough. But it did not give me what I most want. I continue to hope that I may be able to establish a relationship with the right person. The same as any other "dude", as my older brother Tom would say, I want to be able to hold hands with someone, to love and be loved.

· Nick Wallis appears in The Children of Helen House, Tuesdays at 10pm on BBC2.

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