One of the things I have found most frustrating since living with fibromyalgia, is the sometimes uphill battle with daily life. Somedays feel great and it can be easy to feel obliged to pack as much as I can into these days, and other days are really not good at all, and fibromyalgia can rob me of joy and opportunity. Finding the right balance can often be tricky. However, there is a simple way of managing your life on a daily basis, while living with fibromyalgia, and I would like to share this with you today.
I was taught about this technique in a recent Cognitive Behavioural Therapy (CBT) session. It was my second session and we were reviewing my previous sessions ‘homework’. I had been asked to keep a daily activity diary, which looked a little bit like this.
I had filled this in for 9 days straight, just as I went along, or at the end of the day as I was reflecting back on what I had achieved. When I went along for my CBT session I felt embarrassed that my life looked boring, too routine, but at the same time knew that building a routine was helping me to feel better, helping my overall wellbeing, and my ability to sleep. Yet I still found myself saying, as I handed my diary over ‘I haven’t done very much’. Heres a sneak peak into what my diary looked like (excuse the messy writing!).
My very lovely and patient therapist took a few moments to look at it. Then she said “Actually, it looks quite busy to me…..”
She asked me why I felt I hadn’t done very much and we spoke about how sometimes it can be easy to compare your current fibromyalgia self to your past self. You find yourself thinking “am I lazy?” because you feel that you should have perhaps done more or that what you have done has left you feeling tired and no longer productive. We spoke about how you can often find yourself thinking that you haven’t done much because compared to your own extraordinarily high standards you haven’t and yet you are still tired at the end of the day. However, in reality, you have actually done quite a lot of activities, just not necessarily in the right order or with the right approach.
Prior to having Fibromyalgia, I could pretty much go out on a whim, childcare permitting. I could have late nights, sleep like a log, with alcohol in my system, and even with only a few hours sleep still function like a relatively normal human being, knowing that I would catch up the next night. I could squeeze in running without much thought, be out all day with the kids and still cook dinner, and whip round the house in a flash tidying up.
There are no more late nights, no more evenings out, and if I do go out it has to be planned so I know that the next day I can recover. Alcohol? Pah. My sleep is all over the place, and I never catch up. If sleep is worse than just ok, I just well write the next day off. If I mess up my sleep routine, well, I can forget sleep. I don’t run anymore, but haven’t given up all hope of this, and I have to make a choice between going out for an entire day or cooking dinner, I can’t do both without consequences. For every activity I have to sacrifice something else, I simply cannot do it all, and thats ok. I’m at peace with it. What I had never considered however, before this session, is how I plan my activities and my days so that every day can potentially be a good day. I’m already quite good at scheduling “me time” in, but further consideration needs to go into when that time is.
This is where my therapist introduced me to the theory of graded activities into RED, AMBER, and GREEN activities, or as I know them, RAG ratings (we use RAG ratings a lot at work so I’m stick with what I know).
Red activities are those that require a lot of either physical or mental energy. Amber requires a moderate amount and can be sustained for longer. Green are those that don’t require much effort at all, and should be considered as restful activities. These ratings will of course be different for everybody, but I have since re-written the diary shared above with my own personal ratings of the activities to see how it looks, and this is a snippet of the results.
You can probably see that I have a good mix of RAG in there, but the problem is that they aren’t exactly in the right order….. I’m tending to book end my days with green activities, with the occasional one thrown in during the day, and then the rest of my day I am filling with ambers and reds. Also, on some day’s I appear to to have taken the “all or nothing” approach (especially weekends) and this leaves me in danger of having a flare day.
Moving forward what I am now doing is planning my week by pre filling some of these activities into my calendar, the ones I already know are going to be happening, and then building and planning my days around them. An example of this may be that I plan my acupuncture sessions to be at a time where I can place a green activity either side, I may decide to read or listen to a podcast on my train journey there and back and make the journey itself more green than amber, or arrange for the girls to be picked up from school by someone else to allow me to rest with a green activity when I get home. I may ask my husband to cook if I am doing the after school clubs or vice versa, to lessen the impact of too many red and ambers in a row. I may simply ask for a break for 30 minutes to go and read a book in a quiet space if I have been at home with the girls all day (this is probably going to be the hardest thing to do, mum guilt). This planning ahead is going to be especially important as I have now returned to work and gradually building up to full time hours again..
It doesn’t matter what you do with your day, just so long as you bookend red activities with green ones and you don’t do your red activities for too long. Schedule in breaks from these tasks, and make sure these breaks are green. Don’t forget those pesky amber chores which don’t feel like much in themselves, but stuck together can easily turn into an amber marathon.
We are all individuals and will have our own RAG ratings, and just because a task is red doesn’t mean it can’t be enjoyable. One of my favourite things to do since having fibromyalgia is to cook, and I enjoy it immensely, but it is still a red task and drains me of energy. However, just because it is red, doesn’t mean I’m not going to do it, or enjoy it. By scheduling your days, putting a little more thought into the order of your tasks, and letting go of some things, you should be able to reach an equilibrium and manage the symptoms of fibromyalgia that are a direct result of simply doing too much.
Since implementing this approach for the last few weeks, I already feel more in control of my day and my symptoms. I am listening to my body and mind more closely and paying attention to how important each task is (do I really need to hoover if no-one is coming over?). I’m working hard on not cramming too much into my good days, and taking a little bit more time to fill the gaps with green tasks, not amber ones. I have also adjusted the way I do some of my previously amber tasks so that they have now become green tasks.
The last thing to consider, which I haven’t had to deal with yet is simply the chance that life is going to get in the way of this well thought out plan. There will occasionally be days when the children are sick, the cat needs to go to the vet in an emergency, or your kitchen floods. On these days you just need to do the best you can in dealing with the issue first and then re planning your day – do you need to do the shopping tomorrow instead and rustle up a quick microwave meal, just this once? Many tasks we do are as a result of a choice we have made, and for some of them there may be an alternative, such as getting someone else to do the washing up or getting the kids ready for bed.
I would encourage you to experiment with RAG ratings by first keeping a diary for a week and not doing anything different at all. After a week sit down with your support, this may be a partner, a room mate or a parent, rate your activities and see what changes you can make. What they can help you with? Have a go at re-writing your diary using colours, are all of your colours clumped together or are they interspersed throughout the day? Are you compensating on your good days and doing too much? If so, have a practise at drafting a new diary, by first filling in the non negotiable tasks like employment, and switching around the optional tasks. You’ll probably find you can still get the same stuff done with your day but just slightly differently, conserving physical and mental energy and controlling your fibromyalgia symptoms better.
For more information on fibromyalgia and CBT please visit here
I’ve said it before and I’ll say it again, in the words of Albert Einstien “Insanity is doing the same thing over and over and expecting different results”, so try something new and RAG rate your lifestyle today!