I have recently made some big changes to the way I am managing my CFS. This post, I hope, will help show you how I lived and the feelings and emotions I experienced while getting to grips with Chronic Fatigue.
I used to be active. I used to climb for hours, walk for miles, run up hills. I used to think nothing would stop me. I remember, when I was coming to terms with what it meant to be autistic, thinking to myself that the only thing that could hold me back was fear. I was grateful that it was a mental thing I could learn to over come, apposed to a physical barrier. I thought, that as long as I refused to let fear stop me, I could do anything.
It’s hard to describe what it is like to live with CFS. But a simple explanation is that my body doesn’t produce as much energy as it should and is less able to recycle the molecules and stuff that are used in the process, so I run out of energy much quicker and need longer to get it back. It’s a bit like trying to run a car whose fuel tank only fills to 25% as hard and as fast as a car which can fill to 100%. Quite simply, it won’t work.
But I’m a human being, not a car. For years my body seemed to work well. I loved to be in the mountains, on my bike or at a climbing wall. I saw myself as a mountain girl, I was happiest outdoors. I was planning to travel, see the world, but then I got a cold and everything came crashing in.
I went from long days out, to spending most of my time in my room watching TV. I told myself I would get better soon. I would get back to normal, I just needed to be patient.
But I didn’t get better. The tiredness persisted. I was sleeping for over 12 hours and doing nothing in the days. And then on a good day, I would go out and try to do everything I had be wanting to do, only to crash again after. I stopped cooking good food and instead bought cheap stuff, that was easy and required little preparation. Eventually I agreed to move back in with my folks until the Doctors could figure out what was wrong.
Moving from the Highlands to London was hard. I had no friends in the city and hated the thought of being away from the vast outdoors. I spent most of my time alone hardly leaving my room at all. I resented my body for not working as I felt it should. I didn’t sleep well. Taking hours to get to sleep and then staying in bed until early afternoon. I saw Doctor after Doctor, each one not seeming to be able to find out what was wrong with me and passing me on.
Eventually one suggested that I might have chronic fatigue syndrome. I looked it up online and it seemed to fit, but what I read was hardly encouraging, it seemed for most people, it was a lifelong and often debilitating thing. I was 20. I felt like the rest of my life had been robbed.
I started to try to find ways of reducing my levels of exhaustion. I set an alarm to get me up in the mornings, to keep my sleep pattern consistent. I stopped pushing myself and then needing days to recover. I ate better and tried to remain positive. But it was hard.
I would see pictures of my friends out climbing or on holiday and fill with jealousy. I wanted to be doing those things too. I was lonely, most of the time I was alone in my bedroom. I hardly saw or spoke to my friends, they were at uni, busy with their own lives. I often felt a prisoner to my body, trapped with no way out. It became hard to have conversations, I never had anything new to say and I didn’t want everything to be about my health.
I was also conscious to seem positive. I didn’t want to seem like I was complaining. When things got too much, I would hold it in, until safe in my room at night and cry silently. I never told anyone. I didn’t want them to think I couldn’t handle it.
But as time moved on things got better. I woke up one morning in mid December (2015) with an idea for a story. It felt strong so I followed it. It became my main focus. This novel that I was writing, a way of escaping my reality. My characters became my friends. I was happiest when I wrote but I could only concentrate for short periods.
I became project focused. Writing and knitting. I got scared of over doing things as it would mean I would’t be able to write. I final felt like I had a purpose again.
But time kept moving on and I was’t getting any better. I was stuck. I was able to manage my symptoms but nothing seemed to be changing. The future seemed to spread away from me, vast and unattainable. I was stuck in a bubble, it was safe and warm but not where I wanted to be.
I wanted to to move on but I was scared of doing anything that would make me too tired to do the things I enjoyed. What if I tried something and it meant I was too tired to write for days? Or left me unable to do anything but watch box sets on Netflix for a week. I knew my mental health was dependent on being able to do things. Change seemed too much of a risk.
While I kept a smile on my face and told everyone that I was good, it was a lie. The more I said it the more I wanted to believe it. Maybe if I smiled enough and repeatedly told people that I was good thanks, it would become true.
I knew I had to keep the mask of coping on, I had to convince myself I would be okay. I had to tell myself I would get better, even if I had no idea how.
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The girl with the braid in her hair xxx