It’s hard to think it’s been almost three years since I got the cold that caused the CFS. They have, in many ways been the stranges three years of my life. No one expects to get a chronic illness at 19, it’s the time when people should be out, exploring the world, doing new things, full of energy, but instead, I had to move back in with my parents and try to come to terms with the new limits of my body.
The first year was the hardest by far. No one knew what was wrong with me and it was hard to believe things would get better. At that point, my whole identity was built around the things I did. Climbing, skiing, spending time in the mountains, that was who I was. Losing that and having to move to a large city far away from everything I loved almost broke me.
The second year, I found purpose. I started writing a novel, it was an accident at first. I just woke up one day with an idea in my head and I knew I wouldn’t rest until I followed it. I had the time and even with my problems concentrating I managed to write. Often I would be left exhausted by the effort I made each day working on the novel but it was worth it, it gave me something to focus on and if I didn’t use my energy on writing then all I would be doing was binge-watching TV and knitting.
For a while, I tried to convince myself that this was enough. The internet was full of stories of people who never got better, who had to learn to live within the confinements of CFS and it was hard to believe that I would get better at all. My life, it seemed would be spent inside a house with only my imagination and once weekly kayaking as an escape.
I tried hard to make myself believe that this was enough, that I could live within these parameters. But I knew deep down I was doing that because it felt safe, I was scared of losing the few things I had by trying to get better. While I tried to convince the outside world that things would change and I would get my life back I struggled to believe it. I have written about this in more detail in Stuck in a bubble
Getting better was always the aim, getting to a point where I could live the life I wanted to. I thought as I got better things would just get easier and some things have. (Please note I am not complaining at this point, I am thrilled at my progress but it can still be damn hard) What I didn’t expect was that even as I got better some things would get harder.
As I have said before CFS is a constant balancing act. I’m always having to think about everything I do. Is this worth the recovery time? Am I ready to introduce something new into my week? What might be causing this excess tiredness? On top of this, I have to balance all the considerations for my depression and diabetes. It can feel like I spend half my time trying to balance one aspect of my life against another.
I know this is something I will always have to do to an extent. Carbs will always have to be counted, depression will always need to be kept on top of. It is just a fact of my life. And I don’t mind for the most part but every now and again it gets to me.
Sometimes I want to get away from it all. I want to be able to do things and eat things without needing to think too much. I won’t talk about this readily normally. I don’t want to be seen as complaining after all things have got a lot better. But it doesn’t stop it being hard. Getting better, it seems means more thinking, more balancing and more patience.
It’s also more lonely. Before I didn’t have the energy to go out and too much social interaction would leave me exhausted, I couldn’t cope so I didn’t crave it as much. I was too tired to want to do things, life was boring but I knew I wouldn’t cope with anymore. Now I need more, my week is managed day by day, Sunday is kayaking, Monday is also kayaking (being out two days in a row is a big deal!) Tuesday is recovering from being out two days in a row, Wednesday is normally cooking dinner and lots if knitting, Thursday, and Friday are writing days, either one or the other I will go to a local cafe for a few hours with my laptop and write and Saturday is just dull. I don’t want to tire myself out before my two days kayaking.
For a while, this formula worked but now I’m needing more again. In the new year I know I will need something more, preferably something that pays money. I need to have more interaction with the world. 5 days a week with no one but the cat to talk to all day is too much alone time. But I’m scared that it will be hard to find something that I will manage, after all, it’s been three years since I last had a job and I will only be looking for a few hours a week.
I feel a million miles away from where I was. It’s hard to believe that a year ago I would go days without leaving the house. That I didn’t know if I would ever get better. Now I know I will. I know I will get back to where I want to be it’s just going to take a while. And in the meantime, I will write, kayak and knit my way through each day. Until I run out of words to write, yarn to knit with or the Thames runs dry.
Sorry, it has taken so long to get another post out, I have been a bit preoccupied with my novel and vast amounts of Christmas knitting!
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The girl with the braid in her hair xxx