As part of my recovery it really helped me to see the amount of energy I had in terms of deposits in a bank. When you become ill with CFS/ME it is like you are in energy overdraft, and right at your overdraft limit. As you begin to heal you may occasionally go out of overdraft, but overspending energy quickly puts you back into the red again, and it can take time to get back in the black. It's as though there is nothing to spare and you have to continuously cultivate what you need to spend. But the trouble is, because of the nature of the illness, there is a tendency to spend everything we have and more, and be right back at square one again. I feel that we have to learn to cultivate energy and to spend it wisely, in the same way that it helps to manage finances rather than just spending when we like and hoping for the best. There are many things that we can do to cultivate energy such as structured rests, sleep, gentle breathing exercises, shiatsu, acupuncture, energy medicine exercises, healthy eating, laughter, the right company, inspiring literature, positive music, uplifting theatre and films, etc. But the key is that once you have cultivated your energy you need to learn to spend it in a way that does not drain your resources.
There are a number of ways to manage energy. Pacing is a great tool for recovery from illness but for many, the concept is very frustrating or alien. I feel that this is fundamentally because ME/CFS often affects those who have traditionally lived their life at a very fast pace, and in an unbalanced manner, and the concept of pacing leaves them feeling shackled. Despite pacing being one of the key mainstream approaches to managing ME/CFS, it is the one I found most difficult to grasp. This was largely due to me having no concept of what it meant! On numerous occasions I was told "make sure you pace," without an explanation of how to pace. Furthermore, because I had lived my life at 100 miles an hour (in many ways largely avoiding myself or, more specifically, avoiding what was going on in my head), the concept of pacing was as foreign to me as another language. Without guidance, early attempts at pacing included imposing rigid structures on myself with little consideration for how I might be feeling. I made plans, timetables almost, of how I would spend my day, and invariably included too much on the plan!! I felt frustrated trying to live by a rigid structure and would subsequently give up and feel doubly frustrated.
Next I turned to Reverse Therapy for the answer. (It is worth noting here that I only had 2 sessions due to budget). I got lots from Reverse Therapy in terms of understanding ME/CFS, and also the idea that in our day we must have balance, variety and fun. However, the main advise which it gives which is "listen to bodymind" (rather than headmind), I found very difficult to access. This is chiefly because I feel that ME/CFS plays havoc with your circadian rhythms, and creates a disconnection between mind and body. Reverse Therapy helped me reconnect body and mind but I still felt that I needed some structure that it didn't offer me, especially in that it advises to scrap pacing altogether and just tune in to the signals of my body. This is all very well, but having abused my body for so long by not listening to it, and also feeling that I needed some kind of structure, this approach lacked something for me on a personal level. Had budget allowed me to continue I assume that my very skilled and competent practitioner would have helped me work through these issues. However, everything happens for a reason and I believe that the way I manage my energy now is right for me.
So what am I doing differently? Well, the main change in how I manage my energy came about after I visited the Frenchay Centre for Chronic Fatigue. It's funny because a yoga teacher, meditator and fairly spiritual being, in my mind I have a perception of myself which would rather have just been able to access the "listen to bodymind" message from Reverse Therapy. However, rather than reject my underlying tendencies to need order and structure, I have come to celebrate them. I have tried living in chaos and living without structure many times in an effort to try and overcome these tendencies. Yet I became much happier when I learned to love these things in myself! So what did I gain from Frenchay? Well, first of all I was given a sheet to colour in to get an idea of my activity, sleep and rest. This sheet was divided into 24 hours per day so that I could chart my energy expenditure through out the week. What I liked about this approach was the key that gave the activities the grade of rest/low demand/medium demand/high demand/sleep. After the first week I couldn't believe how unstructured my life had become. I was getting up at different times per day, sleeping in the day, and doing things when I felt like it rather than having any structure.
The first thing I did was to start getting up at the same time every day and to stop sleeping in the day. I had to go cold turkey on this for a while and it was a little tough, but pretty soon my sleeping pattern started to normalise.
Next I started to work out a rough structure for the day. This included things like doing the cleaning in the morning, sending emails and going on the net in the afternoon, and having some fun in the evening. I ensured that I had 3 structured rests per day of around 30 mins each (laying flat, eyes covered, relaxing music, and some focus such as a breathing exercise). I also made sure that if I did a high demand task (such as cleaning) I would only do a short burst and follow with a low demand task or a rest. The other thing that I regulated was my meals, aiming to eat 3 regular meals per day (with snacks in between), and eating them at roughly the same time each day. Thus I began to reset my body clock and my circadian rhythms.
As time goes on my structure is becoming more defined and my routine more developed. What's more, if I do have a bad nights sleep I am now able to continue with my structure rather than staying in bed all day. This is real progress for me. I have also continued with the colouring in. This is chiefly because it is a great way to chart my progress and help me see that I am moving forward. Slowly and over time the amount of high demand tasks have increased and this makes me feel confident that I am progressing. This may not be my ideal way to live and I do not see it as a long-term plan, but at the moment making this kind of investment in how I spend my energy makes me feel like I am taking it seriously. It is like re-training myself to be responsible for my energy incomings and outgoings - a rehabilitation programme for the adrenaline junkie that I was - a fireball of energy who ultimately burned herself into the ground!
If this kind of structure doesn't appeal to you it may help to think of it as a short-term solution. I had heard about this kind of management when I first got ill and it was totally unappealing to me. It took me a whole year (when I had tried everything else), to re-assess what I needed to do and admit that I was still like a child in terms of my energy expenditure - spending every jot I had and then becoming cranky and tearful when I had burned myself out. However, I turned a real corner when I admitted to myself that without some kind of structure I would continue making the same mistakes. I actually feel a lot safer now I am monitoring my energy output. It also means that I am less likely to spontaneously spring clean a whole room in an hour just because I feel good for 5 minutes! And it takes the pressure off my lovely partner who used to have to constantly remind me of the pitfalls of the way I was spending my energy (or pick up the pieces afterwards). And since I have become more responsible for my energy expenditure I don't have to rely on my partner so much, which gives me more self-respect (and him more time to run his business). So in all, I feel like I'm on to a winner. I've often heard people with CFS/ME say that if you're that spontaneous and driven type of personality it's impossible to change. Well, I say anything is possible. If you give yourself the message that you are never going to change then of course, it is very unlikely that you will. But if you admit to yourself in a non-blaming way that the way you manage your energy will have a huge impact on your health, and if you decide to choose health over sickness, then invariably this will mean taking very good care of the way you manage your energy. It's a choice, and one that you have the power to make for yourself. If you are still in a continuous boom and bust cycles I hope that you are able to resolve the issues within yourself that are keeping you there and begin to treat yourself with the respect that you deserve, because ultimately, you are worth it.