“How to Cope with CFS Relapse” – this have to be the number 1 topic I’m asked about by my mentoring clients and via email.
Ooooh wow. Relapses, ey?! Don’t you just love ‘em. Just when you think you’re on the right track, you wake up one morning and you’re right back where you started…and you feel hurt, ashamed, disappointed and terrified.
My Experience of Relapses
I’ve had a number of relapses during my time. Many of them were during times when I was actually managing to work full-time, but I definitely still wasn’t well. I ignored my body completely and ended up taking not just one day off with a cold, like most people, but at least a week. I knew if I woke up on a Monday morning, felt disgusting and phoned in sick, I knew without a doubt that I’d probably be off for a week. With hindsight, once I told myself this a few times, it was almost like I was setting myself up to take the week off, but I knew my body was weak and a relapse was what I needed for my body to tell me to slow down. I felt incredibly guilty about letting my colleagues and students down. I think this guilt most definitely prolonged my illness- I used to think so negatively and badly about myself.
Whether you’re working or not, you know what it feels like when it seems as though everyone in the world is fit and well and can hold down a 9-5, 5 days a week job without batting an eyelid. When I was at work, I pushed myself to be as good as, if not better than my colleagues, and never gave myself any slack or down time. I didn’t eat properly, didn’t exercise and self-care most definitely came last, so in a way, with all the stress and pressure I was putting on myself, it’s no wonder I relapsed.
Tips for CFS/M.E. Relapses
If you’re like me, relapses came to be unwelcome, but unfortunately very familiar friends. Here are some tips to carry you through these time when it feels like you’re back to square one again:
- Know that this relapse is just a small set back on your road to healing and it does not mean that will never recover or are incapable of recovery. Brush it off and focus on the journey ahead.
- Each relapse in the greater scheme of things is there to teach you something. Think back- how did you feel just before your relapse? (My throat and throat were incredibly painful just before mine, and I used to slur my words) Where you really looking after yourself? Did you find yourself getting stressed? How could you change this for next time?
- If you can, write down how you’re feeling just before relapses and your symptoms in a journal. You can then refer back to it if it happens again, so you know what your triggers are. Try and find ways to reduce or stop these triggers altogether- then you’ll really be able to get a handle on what’s going on and be able to prevent or reduce possible relapses in the future.
- As tempting as it is, do not wallow and give yourself a hard time. This is the worst thing you can do. Pretty soon, you’re swimming in negativity and wake up the next morning feeling worse (it took me ages to really realise that the more negative and ‘in my head’ I was, the worse my symptoms were, the more ‘brain-foggy’ I was and the longer my relapse lasted for – coincidence?!)
- As soon as you’ve realised you’ve relapsed, do something lovely just for you- be incredibly kind to yourself, just as you would a family member or a friend. Negativity and anger at yourself is just wasted energy which can be much better spent on relaxing into recovery and for a better tomorrow.
If you’re going through a relapse just now, please know that you are not alone. We are here with you and we know what you’re going through. Think about the big picture and your journey as a whole- of course there will be set backs, but it makes the journey all the more interesting and enriching.
Love and the big picture,