Once I made the decision to stop working, everything happened rather quickly. Six weeks later and I’m officially unemployed, with not a client to speak of. Everyone was lovely and accommodating and I’m feeling good that I was able to organise transitions for my clients with minimal fuss. I can hardly believe it was such a difficult and agonising decision. It’s such a relief to be free of it all; and now here I am. I’ve spent a couple of weeks taking it easy and trying to read my body. One thing became blindingly obvious almost immediately. I need rest. Oh my god I need rest.
I stumbled across a brochure about ME/CFS (chronic fatigue) and was pretty surprised to see I have many of the diagnostic symptoms. It’s not a condition that’s easy to test for, but if my amateur reading of the criteria is anything to go by, there’s a good chance I’m a candidate. I’m not sure if I’ll chase up a diagnosis given the main treatment is rest, which I’m already doing. Still, it might be nice to give this thing a name…
If you have ME/CFS there’s a technique called pacing that you can use to manage symptoms and work towards recovery. Pacing requires you to understand the scope of your energy envelope and then stay just within it. This means you need to identify the level of activity you can do before you notice pain, fatigue or other symptoms. For some people with ME/CFS, just getting up and dressed is beyond the limits of their energy envelope. I’m not so bad. Since reading about this I’ve noticed that my energy envelope is one to two hours of moderate activity. For me that’s anything from grocery shopping to a pilates class. Just getting the kids to school in the morning threatens to exceed my energy envelope. After that time I become physically exhausted, my back, neck and shoulders ache and I just desperately want to lie down. I feel anxious, overwhelmed and emotional. Of course, up until recently I didn’t lie down, I just got on with the day. Yes I always felt like resting, but who needs a rest at 9.30 in the morning? And who can rest when there’s so much to do?? On a daily basis I would exceed my energy envelope many times over, and eventually I’d crash. Lately the crashes have been more frequent and have hit harder. This is called the boom bust cycle. You can’t break out when you’re locked into boom and bust.
If you stay safely within your energy envelope, you can rest enough to restore it, then jump back into the game again. That’s what pacing is about. Last week I tried it out and – unbelievably – it worked! I broke my day into 2 hour slots and scheduled a rest after every activity period. Every 2 hours of activity is followed by 2 hours of rest. For me, rest means being horizontal or propped up on the couch. I can watch TV, listen to a podcast, read a book, meditate or sleep. Cooking, working, eating out, catching up with friends, sitting at my laptop, walking, shopping and tidying the house are all activities that need to be followed by rest. Twice last week I did more than 2 hours of activity, and subsequently crashed. On the other days I managed far better. If I rest long enough and well enough, I can do several two hour stints in a day without falling apart.
Breaking your day up into 2 hour slots may seem incredibly inconvenient, but knowing that I now have some control over my symptoms is actually an enormous relief. Reading about pacing and seeing it work has given me the permission I need to properly stop. It’s not something I’ve ever been good at, but now the switch has been flicked and I’m ready and willing to lie down two or three times a day and do nothing. I’m actually enjoying the mental and physical downtime, and love having time to read and listen to some great podcasts. I’m definitely after more ideas though – I’ll need plenty of good material to keep me entertained several hours a day for the indefinite future. Inspire me!