I said I’d go into this, and what better time than now? Plus, if I leave it until later I’m probably going to forget so. . .
First off, I’m not talking about the Japanese Manga series. Nor the support for new parents group. This is something my mother came up with when I was younger to help me cope with my PV and, surprise surprise, it’s sort of stuck with me.
As a child – no matter how academically clever or streetwise or grown-up seeming – you don’t respond or deal with things in the same way that an adult does. (That sounds obvious, but I think sometimes it’s easy to forget) And although children can understand very complicated issues, they need them explained and presented in a suitable way.
When I was diagnosed with ME/CFS, I don’t know if children-aimed services existed at the time, but I didn’t have any contact with my consultant or GP about my condition after a follow-up appointment about a year after my diagnosis – my mother and I basically figured out how to deal with it on our own. ‘Baby steps’ became shorthand, something we said to ourselves and each other that means a whole lot more than those two words. Things like:
- Small improvements are better than none (have hope)
- Do what you can when you feel able (have patience)
- Even if the small step you take turns out to be too much, you’ll hopefully only have a small step back rather than a big one (try not to restrict yourself because of fear)
- You don’t have to do ___/learn ___/get ___ right straight off (be realistic)
- If you fall down take a moment: have a rest, have a cry, try again when you feel ready (persevere, feeling worse isn’t always the end of the world and it’s important to keep trying)
- Small steps each day will probably get you further than one ambitious one (don’t demand too much of yourself)
- You will get there in the end (chin up)
I say we said this to ourselves and each other because ME/CFS is not a condition that affects only the person diagnosed. It affects pretty much everyone and everything in your life, and sometimes my mother needs reminding of these things as much as I do.
For me, hearing those words, saying them, thinking them even, is also like. . . Knowing there’s at least one person who’s always going to be there for me, ready with support, encouragement, understanding. . . a hug. . . just as she has been my whole life. And I know I’m infinitely lucky to have that.
So, that’s baby steps. My secret to surviving ME/CFS. Something which I’ve realised while writing this is probably similar to or the same as parts of various coping strategies offered by professionals: pacing, positive thinking and affirmations, moving away from perfectionism. . . But done in a way that’s right for me.
Is there someone you speak in code with? Can you tell that person how you’re feeling, remind you both of something more than anyone else could guess, warn them when you’re going to do something ambitious or if you think you might be getting ill without admitting as much aloud? Give a shout-out to those wonderful people who support you here.