Dear X: A Letter to Chronic Fatigue

Today’s blog post comes from Louise Kenward. Her background is as an artist, currently writing, with a career in the NHS as a psychologist and psychotherapist specialising in Cognitive Analytic Therapy (as a therapist and a supervisor) in East Sussex. She is seeking to find ways of drawing on all of these aspects of her experience and letter writing has become a growing part of her work. Here, she addresses a letter to her illness, Chronic Fatigue Syndrome. Louise can be found on Twitter, @bexhill2bexhill.

Dear X,

We have been together for six years now. On some days this feels like it has been much longer, as if you have always been with me, and I don’t remember a me without you. On other days, it seems only yesterday that we first met and you swept me off my feet. There are still times now when I can be quickly taken back to the intense feelings of those early months, as if they were happening all over again.

I did not believe in you at first. It couldn’t happen to me surely? A myth or fairytale, stories of you from others were terrifying. It was just a passing fling I thought. I waited patiently for you to go. When this didn’t happen I started to ask for help from others. They did not believe in you either. It was fine, you weren’t really there, I would realise soon enough and all would be well. They couldn’t see you or hear you, couldn’t touch you or taste you. Only I had those powers it seemed. I tried to ignore you. I hid and hoped that you would go, retreating to my bed for days and weeks at a time. But you’d already moved in. I don’t remember opening the door to you. I didn’t see it happen until you’d unpacked, put on your slippers, and joined me on the sofa day after day. You would not let me out of the house once you were in, not for weeks and months at a time. My sense of time drifted from stretching out forever to pinging through many months with little to show. Day after day after day. It is disorientating spending time with you. I lose words, thoughts, concentration, me. It is hard to think about anything else but to exist at these times. This occupied my entire being for a very long time. Sleep, eat, repeat.

What are you?

After several months I started to wonder if perhaps you were real. You stole my words and my balance. I became clumsy and heavy. Sometimes it was hard to move at all, at others I would bump into things and trip up. Forgetting I was making porridge, I’d return to the cooker to find another burned, dry, blackening substance at the bottom of the pan. Washing was restricted, a bath was easier to manage than standing up to shower, but it meant I had to remember I was running a bath and not leave it to overflow.

As I thought you were starting to loosen your grip and I could begin to do new things, I could concentrate on a film or reading a book, you would return without warning and knock me back into bed. People would continue to tell me that you did not exist. Others told me I should accept you unconditionally and let you do as you pleased, to have faith, that all things happen for a reason. Both of these places seemed impossible to be in, neither of them gave me any control or understanding. I began to learn that getting angry and upset only rendered you stronger than before. I learned to moderate everything, shutting down almost entirely. I was almost paralysed in body and mind. I could not think and I could not bear to hear of others who know you. It seemed unrelentingly terrible. People were bed bound, housebound around the world. All were very angry. I could not bear such intensity of feelings, I was so porous it was felt acutely within me. I was a sponge, soaking up noises that were too loud, smells that were too strong, light that was too bright. It all made you stronger. I had lost any filters or capacity to tolerate the outside world. It intruded violently and without apology. Each time leaving me even more exhausted. I concentrated on opening and closing my rib cage to fill my lungs as full as I could. I felt the need to pay attention to my breathing as if my body could forget to do that too.

My world had shrunk to my flat. You drove away friends and family. You lost me my job. I became reliant on other people at a time when I had fewer people than ever to be reliant on. I had to rely on myself when there was less of me than there had ever been.

You confront my greatest fears and vulnerabilities. Psychological sore spots are emphasised and can become tender beyond any kind of touch. Feelings of uselessness, fears of abandonment, having to rely on others who are not always there, being cut off, are all felt more acutely than they may have been felt in years. I have become a helpless dependent human, without the charm or the expectations of a small child. I am tedious and boring, and alarmingly self aware that I have very little to offer anyone in return for comfort or support. I need someone to buy milk and bread, not once, but all the fucking time. To continue to be so needy and unable to look after myself is not just tiresome, it erodes the confidence and esteem of a functioning and able adult. And, even worse, in trying to do something, something I know I can do, and may be capable of, can set me back days, weeks or months of recovery. One walk to the beach, a trip to the supermarket, just so that I can choose my own bread. The tiniest of decisions that give the tiniest of control can mean the world. For that to be undermined renders the reality of my helplessness and uselessness in technicolour.

There was a brief time when I thought you’d gone. It seems though, despite my best efforts, you are here to stay, for a while longer at least. Is there a way we can perhaps live alongside each other? Maybe there are things you can teach me, new things to learn. I realise I am not helpless or useless, but my functioning levels have changed. In many ways I am lucky, but my abilities have shifted. You have given me more time, as much as you have stolen it. If it weren’t for you I wouldn’t have left my career to travel. All the things I was waiting for when I retired, you forced my hand. My life may be richer for that and in time I may thank you. I cannot yet be appreciative but I can see the value that you bring, the space I have to dwell in and consider, to see things differently. I am not caught in spirals of demands in the outside world. You bring a strange cloak. With energy I cannot rely on I am joyful at moments unexpected, of noticing seasons shifting and rain at the window. I am jubilant at much smaller achievements, I notice the little things. There are still times when this frustrates me, I can undermine myself and be critical of accomplishments, but only when I compare myself to others. I cannot say that you have given more than you have taken, but perhaps that is because I see you through just one lens. If I were not to have met you when I did I wonder where I would now be. I suspect I would be inclined to take fewer risks than I have. I suspect I could have passed through months and years without questioning where I was and what I was doing. Perhaps that is wrong, but you forced me to make difficult decisions. In good health they could have been delayed and deferred. You have made me choose and think very carefully and consciously.

The effect of the kryptonite I seem to be carrying in my body eases.

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