Had a languorous afternoon tea in medieval tea rooms, then fish and chips and a pint in the park. Only minus was never got round to having a birthday Pimms by the river, but that's because I was having such a lovely time anyway. Took some (hopefully) wonderful photos, but as I'm not digital it'll have to wait until I've bought some more developing chemicals until I can show them to you.

I had tried to get help from social services several times over the past few years with no success, but thanks to advice from my disability rights advocate, this time I knew that I was entitled to a care assessment. (Everyone is entitled to this, so don't be fobbed off by social service people who tell you, as they had several times with me, that they can provide meals on wheels or tell you what benefits you're entitled to, but nothing else.)

After my assessment they decided that I need someone to come three times a week for one hour per time, and this is what I've received for the four weeks since then. (I've just had a review meeting at which they've agreed to continue this level of support.) I have to say that this support has been immensely helpful, although it has taken some adjustment on my part, and it has allowed me to sustain quite a high level of wellness during this period and enabled me to focus my energies on more constructive, creative and enjoyable tasks.

I was pretty stressed the first time the carer came, as I was expecting him to be sizing me up and making a judgement on whether or not I looked ill enough to need his help, but he very tangibly didn't do this, instead he cheerfully got on with whatever tasks I asked him to do. Because of my stress levels, I felt dreadful the first time he was here, and had to lay in a comfy chair and rest as best  I could, but shortly after he left I got up, and saw all the veg I had asked him to chop in preparation for me making some fresh soup. Seeing the veg chopped gave me a wonderful burst of creative energy, and I got cooking and made myself some lovely leek and potato soup – the first time I'd been able to do that in some months. That night I slipped between fresh sheets as well, which was a lovely feeling. And so on.

Since then I've relaxed a lot about having someone come in to 'care' for me, but it's still taking some getting used to as I don't naturally like asking people to do things for me. There's also an issue with having expectations being met: for example on that first occasion, he wielded the kitchen knife like a bush hunter rather than a chef, and I ended up with some rather comically chopped leeks. (Bless him, I'd imagine he's not seen a chopping board before.) But chopped they were, even if they weren't chopped in the way I would have chopped them, and I was able to make my soup.

Chores are now getting done more regularly than I was ever able to do them, and the pressure on me to put regular effort into maintaining my home has been largely removed. (And it has enabled me on occasion to put major effort into a housework task, for example I've hoovered two rooms in stages over the past couple of weeks, as my energy hasn't been sapped by trying to keep on top of washing the dishes and doing the laundry, for example.)

One thing which I started practising later on, and which really helped me to  experience the changes CBT suggested, was meditation. Specifically, what is called mindfulness meditation. This was initially suggested by my CBT therapist, who was very flexible in her approach and very enlightened,  and had also been suggested by my shiatsu practitioner. There is a large Buddhist centre near where I live, and they run various courses in meditation. Once I had got over my initial uneasiness about the religious aspect, I signed up.

The main focus in CBT, as I experienced it, was on identifying ‘unhelpful’ beliefs, isolating them and analysing them, with a view to formulating a strategy to alter that belief and the accompanying behaviour. I found this an extremely wearing process and also one which could be very harsh (having to confront difficult issues face-on). When I started meditating, I found myself becoming aware of some of these issues and beliefs, and others, but in a way in which I was asked not to change them but simply to notice them and allow them to be there, to tolerate the experience of whatever I was feeling.

The focus of the meditation, or at least what I took from it, was an increase in awareness of the quality of my experience in the moment of experience. In time, I found that on a few occasions, I reacted strongly to someone’s behaviour in a way that I have a tendency to do, but was able to gain an awareness that I was reacting according to a pattern, and that this was a reaction rather than necessarily the reality (i.e., the way I perceived this person’s actions was coloured by internal things and the reaction I was undergoing), and this allowed me the opportunity to choose to react in a different way.

The above example is not related directly to CFS and my health, but was an insight I found tremendously helpful and encouraging (and, of course, we are such intricately interconnected beings that it is impossible to say that one area is entirely unrelated to any other). But there were other results I was finding from the meditation which did seem to offer a means to improve my health: I started to become calmer, for one thing, and this allowed me to feel more energetic, but in a less frenetic way.

I was getting quite in to this meditation, and even went on a ten-day retreat on winter (primarily as a way to escape the rituals of Christmas). Unfortunately I feel out of practising when I had my last severe relapse, last autumn, and have yet to star again. It’s a practice which I find requires dedication, and especially so at the outset before it becomes habitual. I’m going to make a concerted effort to start the practice again this week.

There’s plenty more to say on this topic, as it’s something which I think touches on some key issues in CFS, certainly in my experience of living with the condition, and I will come back to it in future postings.