When you have a chronic illness like ME/CFS you can become a bit of a control freak. You discover that by carefully controlling your activity and your environment you can get a lot more out of life. In order to be in as much control as possible (let’s face it, the illness might let you think you’re in control for a while but every now and again will show you who’s boss!) we plan ahead and predict and calculate, according to what we’ve learned about how the illness affects us. For me, the trouble with this approach comes when evidence from past experience tells us we’re heading for doom. The ‘oh no I’ve overdone it, now I’m in for a crash’ or ‘yikes lilies… here comes the headache’.
As far as I’m concerned, these kinds of thoughts are sending my body’s chemistry a message about how it is expected to behave (crash/headache) and don’t leave any room for the chance that perhaps all that wonderful self-care I’ve been practising has enabled a different (better) response. I can’t avoid these thoughts altogether, but I try really hard to catch myself thinking them, and to replace them with a more positive message to my body. So if I’ve overdone it, I convince myself that with extra rest, relaxation, gentle stretching and all the rest of my self-care, my body will be fine. Even if it’s not going to be, it would require the same plan of action, so I might as well give it the best chance possible with a positive message. If I unavoidably come into contact with lilies or other headache inducing flowers I’ll tell myself that this is a one-off exposure, I’ll get over it quickly as soon as I can get out of that environment, and in the meantime my body is doing its best to deal with it and maybe I’m not so sensitive right now. My aim is to give my body a message of peace instead of threat, because only in a state of peace, can it work on healing.
I’ve been severely put to the test over that last couple of days. When I arrived in Spain the house that I’ve moved into turned out to be very damp and it was too late in the day to give it a proper airing. To make matters worse the store room where I’d been keeping my things wasn’t weather proof and despite all efforts to protect things with plastic sheeting a couple of my boxes got wet, and the contents were very damp and mouldy. As I lay in bed after a 13 hour journey and a little too much exertion moving my belongings, I found myself in a state of extreme worry about my health. How was I going to get over the journey if my environment is full of mould spores? How was I going to deal with a damp house when I’d already overdone it? What if living here makes me sicker? What if I have to move? Then I caught myself, reminded myself that I’m just inviting my body to react badly, and why not give it a little more credit. It’s doing the best that it can, and I’ll do the best that I can to give it the best possible chance of being well. I reminded myself that by worrying I was diminishing my coping resources as I’d be next to useless if I didn’t get some sleep. I also reminded myself that I’d form a larger plan of action in the morning when I’m at my best for problem solving.
I realised that the pillows I was sleeping on were damp, so put them in another room and found a dry cushion to sleep on, and I took a pain killer for my headache. I let go of my worries and slept well. The next day I worked hard to air the house and the bedding and wash and dry all my mouldy clothes, helped by a dry sunny day. I also had to clean everything in the kitchen I needed to use. Again, I knew I was doing too much, as I should have been resting up after the journey, but I also needed a hygienic place to prepare food. I kept thoughts about inviting a crash at bay and just did the best that I could. I paced as well as I possible could, kept reminding myself that I was breathing in healing, breathing out tension and disease, I did my best to believe that my body could cope and that I would give it as much rest as it needed as soon as I got the house healthy enough to rest in.
Today, my body aches all over, but I no longer have a mould headache, and my energy levels are holding up reasonably well. The house now seems habitable and I feel happy now that resting will be recuperative rather than toxic. I’m going to be prepared to rest as much as a crash might warrant, and take it as easy as possible over the next few days but I’m not going to expect the crash. I choose to let my body show me how much better it is doing now, how much more resilient it is. I will give it what it needs and trust it to be OK.
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