- Be self-aware but not self-obsessed. Know your warning signs.
- Don’t panic – they’re an opportunity not a sentence
- Do something. Other than ignoring them.
I have found that before I suffer a full-blown ME/CFS episode, there are certain warning signs. You want to learn what these are if you can. Because once you can recognise your warning signs it offers a measure of control: you have the knowledge that you’re heading toward an episode, you can make an effort to ease the severity of it, or if you spot the signs early enough, possibly prevent it altogether.
This is (I think) part of a coping technique called pacing.
Although I now know my main warning signs, (gradual withdrawal into myself, start doing less, posture and way of moving alters) I don’t always spot them, or at least, I don’t spot them as quickly as other people do! And those other people can help you (again) in finding out what your warning signs are – you can ask them if they’ve noticed any changes right before you feel worse, or if they’ve ever suspected you’re getting ill before you actually do. They might not even realise they’re noticing these things until you mention it.
The difficulty is, if you’re anything like me you don’t want to be constantly thinking about how you’re feeling when you’re well. You want to forget about all that as much as possible and just get on with things. Tough tootsies. With this condition you have to become more aware of your body and what messages it’s sending, or you’re only going to run yourself into the ground over and over again.
I’m not saying record every change or evaluate how you’re feeling as soon as you wake up every day, just every once in a while (the timing depending on your own condition) take a moment to check for those warning signs, and if you notice them don’t freak out! Don’t stop everything and take to your bed. Just maybe take things a little easier for a couple of days.
Think of this a chance to change the future, not a set-in-stone prophecy of what’s coming.
So what do you need look out for? How do you work out what your own warning signs are? Here’s a few ideas:
- Physical activity – how much are you doing, do activities tire you more, has the speed of your movements slowed at all, have you done something recently that might trigger an episode, are you moving as smoothly as usual
- Sociability – are you joining in as much as is usual for you, talking, going out
- Sleep – has it changed, are you sleeping more, less, feeling tired earlier in the evening
- Attitude and emotions – do you suddenly not feel like doing things, are your emotions veering toward the negative
- Posture – are you tending to slump in a chair when normally you sit more upright
- Eating – how much are you eating, are you craving certain foods more, have you stopped snacking between meals (if you usually do)
- Mental activity – have your thoughts slowed, how’s your concentration, has your speech changed
- Pain – are you getting aches, an uncomfortable feeling in the joints, headaches
Likely your warning signs will be as individual and unique as your condition, so you’ll have to work that part out for yourself. Maybe with some help from your friends! As previously mentioned, spotting these things in yourself doesn’t guarantee you’re going into an ME/CFS episode. If you do something about you might avoid it or – look on the bright side – you might be adapting to the changing season or be coming down with a mere cold! (Not that colds are anything to joke about when you have ME/CFS, but they don’t always turn into more)
So that’s warning signs. The idea isn’t to bury yourself with them or to fixate all your attention on yourself, but to use the technique as a tool to monitor your condition and maybe give you back a bit of control. And if it doesn’t work for you, don’t use it. Keep looking until you find something that does.