Foggy and Patch are in Patch’s bed snoozing so while I have some peace and quiet I am commandeering Foggy’s blog.

Today I am going explain how important having a routine is to a M.E. sufferer. I can’t remember if I was taught this as part of PACING therapy or Cognitive Behavioural Therapy, but it was a tip given to me by a counsellor at the start of my life as a M.E. sufferer.

This subject is particularly appropriate at the moment because, since I left my old job to become self-employed my routine has gone out of the window! 3 days after I left my job, building work started in our house. Furniture is out of place, there is constant noise and time schedules are run by builders instead of us. All of these factors have left me feeling extremely tired and disconnected with everything.

My counsellor told me that I needed routine so that my body ‘learns’ when energy is needed. So, since 2008 my sleep routine is as follows: I go to sleep between 10-10.30 pm and set my alarm for 6.45 am. It has to be the same every day, even during weekends or holidays. Otherwise, my body doesn’t know whether it is coming or going. Even if I don’t feel sleepy I force myself to go to bed. Otherwise, I will have repercussions to deal with the following day. Symptoms will worsen and I will feel exceptionally tired and unwell. Usually, my eyelids are well on their way to be closed by 10.15 pm anyway! It is not easy for me to explain how it feels when your body is shutting down. As bedtime gets closer, I am unable to hold my head up and my insides feel like they are non-existent.

As part of my daily routine, I usually try to avoid napping in the afternoon no matter how tired I am. However, there are days when napping is unavoidable. Getting horizontal and sleeping is sometimes the only way to feel human – although it doesn’t make me feel ‘well’. If sufferers nap regularly the body gets used to napping in the afternoon and starts to tune into ‘rest/nap’ mode, whether your body needs to recharge or not. Since becoming self-employed, my body has felt like shutting down by 2 pm every day. I know this is because of the noisy and disruptive building works. I can’t wait for life to get back into a routine!


Sally x