I think I was about 15 when I started to come to terms with how the way I react to something, directly impacts the way I feel about it. I know this is all rather obvious but I had always been the type of person who just let things happen. While I was good at getting on with things, I was really quite terrible at finding ways to improve or change the situation.
Previously, when things weren’t going my way, I would bottle up all my frustrations and negative emotions and hold them, until I was with a friend who I could dump them on. Not really the way to do things but I was new to the whole talking about your feelings thing. And talking about things helped, for a about a day. Then I would go back to feeling shitty.
I would then repeat the whole thing again, achieving the same result. This didn’t really do much in terms of helping me and it also drove my friends insane. While they were patient with me to begin with, they soon got board hearing the same complaints and problems over and over. Something had to give.
It took a very frank conversation and a fair bit of crying, for me to accept that I couldn’t expect someone to listen to the same thing over and over and be supportive, if I wasn’t acting on their advice or doing anything to change the situation I was in. I had to act in some way. Sure things might not work and that was fine, but I had to try. I had to take control, I could no longer just sit back and let life happen to me.
But first you have to recognise the problem. That is often the hard part.
It had taken me a year and a half to get diagnosed with CFS. A year and a half of redefining my bodies limits and coming to understand my default setting of just pushing through wasn’t going to help. In fact it would make things worse. Up till this point I had always believed that things could be sorted but pushing through regardless of how hard that felt. But you can’t fight CFS and that took a lot of getting used too..
Sure, I could cope with the condition. I had learn how to make the best of each day, how to find away of doing those things I enjoyed, got used to spending days after days in only my own company. But after spending almost two years of my life in a suspended animation, I was getting fed up.
When people asked me if I would have it forever I would shrug. The internet is full of people who have had CFS for decades. The future wasn’t even uncertain, it seemed non existent. My life, at the age of 21, felt like it was hanging the in balance of yet to be proved theories of my barely understood condition.
I told myself I wanted to get better but every time I thought about trying something like Graded exercise therapy, which is one of the recommended treatments, I felt unsure, after all, it makes almost half the people who try it worse. It was hard to think positively. After two years my not too much, not too little approach felt safe, what if I got worse? What if I became unable to write? Or get out of the house at all?
I tried to keep these feelings away from people. I was ashamed of them, ashamed that I had failed in my resolve, that I was choosing safety over progress. I was in a rut and part of me was choosing to stay there.
6 months after being diagnosed and a really terrible bus journey, I was sitting in a room with a member of the CFS service, crying. All my frustrations where pouring out of me. My anger, fear and disappointment, came out in never ending tears. I wanted a quick fix. I wanted my life back. I wanted to be like any other 21 year old.
That meeting, while unpleasant, was the one that finally got me to understand that I was the only person who could get me better. Yes, this is a physical and not really understood illness but the only people who recover are those open to trying. All those feelings I had been trying not to let out, all those days feeling scared that this was it, all the time I had spent feeling ashamed, it all came washing over me.
Sitting on the bus on the way home I felt my strength returning to me. I wasn’t going to let this shitty illness stop me. I wasn’t going to waste my life feeling sorry for myself or fearing the possibility of failure. I was going to beat this. I didn’t really know how, but my mind was made up and things were going to change!
I started the way you would expect any data loving autistic to start, by making a spread sheet on which I could map out my life and look for trends and patterns and keep track of my activity levels. This seemed like a good idea, after all information is power.
For my initial stage of getting to grips with the process of recovery it worked, a bit. But after a month of meticulously putting information into excel and not really seeing anything, I hit gold.
My social life by this point and shrunk to visits to the pharmacy (The’re all really nice there and I enjoy going in to collect my meds and have a chat) and my once a week outing to kayak on the river Thames.
As we paddled back from Putney everyone was chatting and someone asked me what I do, by this point I had started to tell people that I was working on a novel as that sounds much better then saying I don’t work because I’m ill. Sometimes people take that answer and don’t ask more but often people then ask if I’m working as well. I hate trying to explain CFS to people and tell them that I don’t work because of it. But when I told her I had CFS she told me she had had it too.
This was the first person I had met who had been through it and had come out the other side. We chatted all the way back and she gave me loads of advice and told me how she had recovered. We talked about how I could change my routines to help me get better but also the importance of baby steps in everything. I could feel plans forming in my head and I just wanted to do it all at once. But she told me to hold back.
The next week I started change things in line with her advice. Instead of going on an exercise bike I starting to go for a walk everyday with the aim of increasing the distance gradually. I began meditating after launch each day as mindfulness and relaxation have been proved to help people with CFS. I also started to inch my wake up time earlier, 10 mins every 2 weeks or so.
It may seem like a small thing but for me its huge. I know the process is a long one. I know it won’t go 100% to plan. But after two years of only just managing to keep my head above the water, I’m finally starting to swim.
If you like my work and want other people to see it too please like and share on FB and Twitter.
The girl with the braid in her hair x