I left home thinking that everything would change. That the demons from my past would be lost and I would be free, to be the girl I wanted to be. I thought I would be able to do anything, go anywhere. I thought I was going to travel the world. I had so many plans and dreams.
I started off by moving to the Highlands. I had got a job in a small hotel in Glencoe village and was to live with my cousin and her family. It was to be a gentle introduction to the real world.
Not everything went to plan. I found approaching customers terrifying to begin with and had to practice how to take orders with my cousins four year old son. For the first few weeks I would get overwhelmed by everything and at the end of service need to go and set up the down stairs restaurant for breakfast as quiet time . I got upset when customers where rude and at times ran away crying.
But I was happy. I felt free to be myself. I found friends and saw them almost everyday, something I wasn’t used to being able to do. And I learnt about myself. I learnt ways of dealing with the things I found difficult. I started to understand myself better and feel more confident in telling people I was Autistic. By the time the summer season had ended I didn’t really want to leave.
In November I went to Canada, a trip I had been planning for over a year. I trained to be a ski instructor. I got used to a new country and a new way of living. I passed my exam, moved flats and got ready to start work. But the stress of not getting on with one of the other people in the flat and the pressure of the exam meant I contracted shingles. I spend Christmas cooped up indoors, exhausted and frustrated.
I finally start work, later than most of the people I arrived with. It takes me awhile to settle down and gain confidence. A new routine, no break from other people and a silent war over the thermostat with my room mate, meant by the time I heard there were single rooms available I was at breaking point.
I move again, this time to somewhere I can have my own space and settle down. Things get better. I start to feel happier and even start to walk to work each morning instead of taking the bus with the others. But then my depression returns. I try to fight it. I try to carry on and push through like I always have before but it doesn’t work. In the end I reluctantly agree to start taking anti-depressant medication.
By mid February I start to feel happy and settled. I enjoy work. I get to know the kids that come often and love the way they greet me in the morning, when they visit. Time moves fast, before I know it the season is wrapping up and I am looking for work for the summer.
Suddenly I get ill. Within three weeks of my first symptoms I am back in the UK and in hospital. I’m diagnosed as type 1 diabetic and started on insulin.
I get the hang of diabetes quickly and move back to the Highlands, this time a hotel in the small village of Ardgour, across the Corran ferry. I work all summer in the little hotel, spending my free time walking and visiting my friends from the summer before.
The season ends, I leave the hotel, move up the road to Fort William, buy and bike and get to work exploring the area I have been living in. I spend my days cycling through the glens and falling, even more, in love with the mountains and lochs that surround me.
I get a bad cold and spend a week hardly able to get out of bed. It seems to linger, not wanting to let me get back to normal. The small tasks, like cooking, start feeling harder than they have any right to be. I need more sleep and find concentrating increasingly difficult.
It doesn’t get better, by the time I go to Austria, on holiday with my family, I am needing 12 hours sleep a night and feel tired all the time. I hardly ski that week at all.
I go home and on the advice of my parents see a doctor. I spend the next two weeks in and out the doctors office, as they try to figure out what’s wrong. I get tense and stressed. My body doesn’t feel like my own any more.
In the end I agree to move back in with my parents. It’s one of the hardest things I’ve ever done. For the second time my mum has to pick me up and bring me to London. The city feels overly big and uninviting after months living rurally.
I find the move tough. I develop a twitch and random pains all over my body. I see more Doctors and get passed around the health service as people try to work out what is wrong with me.
I see a neurologist. They reassure me there is nothing wrong with my brain and suggest that the twitch and pains might be caused by depression and stress. I agree that’s possible and on their suggestion increase my dose of anti-depressant. They also suggest that I have Chronic fatigue syndrome. I look it up online. It seems the most likely cause of my problems.
It takes almost 8 months to get an appointment with the chronic fatigue service. 6 more for a diagnoses. By the time I am formally diagnosed I have been in London almost a year and a half, got into music and written most of a first draft of a novel!
Knowing what I have, doesn’t really make it easier. The internet isn’t overly encouraging It feels like my future is resting on guess work, contradictory theories and reports. The world feels very small.
I settle into a routine. I get up late, my days are short. Some days I don’t leave the house at all. I feel trapped. A prisoner to my body. I see pictures of my friends out in the world and am overcome with jealousy. My life no longer feels like my own.
I try to focus on the good things. The novel I am writing, the friends I have made from my Sunday afternoons on the river. I try to stay busy with knitting and other things I can manage from the comfort of my bed.
Sometimes my cheerful manner fades. Frustration bursts out of me. I want my life back! I want to be able to do what any other 21 year old can do! I push too hard on the good days and leave myself exhausted and needing to recover for days after. I try to fight it, but I can’t.
It takes two years and a tearful visit to the service for me to finally accept my reality. I am young,I have a good chance of getting better and getting back to the life I have left behind but only if I help myself. There is no magic pill, no insulin to keep things stable. I have to be disciplined. I have to do as much on the good days as I do on the bad. I can’t push too hard and then leave myself too tired to do anything the next day. I have to be sensible. Take things slowly. Baby steps. It’s not the way I like to do things, but if I am to recover, it’s what I must do.
So I’m going to pull on my smile. I’m going to be kind to myself and I’m going to invite you, to take this journey with me.