I’m so lucky to have a fiancé who has infinite patience, understanding and kindness, but even with those closest to me it can sometimes be hard to explain what ME is like.
It was my lovely friend Jess, seen here on a windswept beach with me this autumn, who inspired me to write this post.
ME = tired = lazy = excuses. Or at least that’s how it goes for some people.
Then there are those who really want to understand and do the right thing by you. Jess is one such person.
If I knew earlier this year what I knew now, I could have saved myself a bucketful of guilt, oodles of anxiety and a rather pointless amount of worry. Why? Because I hadn’t been honest with those nearest and dearest to me.
If you are somebody with a friend or family member who has ME, ask them about it. And if they gloss over it or say they don’t want to bore you with it, persist. But by the same token, check that it’s a good time for them to talk about it as if they’re running low on energy it’s a conversation worth having another day.
Here are some of the basics I tell others when they ask me:
- Fatigue is not just tiredness – it’s an all encompassing sensation like your bones have been hollowed out and your skeleton doesn’t have the strength to hold your body up.
- It’s hidden so though you may be about to tell me I look fine, I may be in pain, I may be exhausted, my legs may have given up on me, my brain might be foggy making concentration or even finding the right words difficult, and my eyesight may be fading a little. All symptoms of the fatigue I was talking about.
- If I say I’m fine but you’re not convinced, persist a little. I may feel like I am burdening you with it, but I really do feel unburdened when I share.
- I may have to cancel on you, and sometimes at short notice. Though I’ve learned to pace myself, there are times when I get it wrong or when something used up more of my energy than I anticipated. It’s never personal!
- If I start yawning or my eye contact starts drifting, or if I suddenly get fidgety and have to move my body around when seated, these are all signs my battery is draining. It’s always helpful to just check in and give me permission to head home if I wish.
This list could go on and on. But I hope that gives you a little flavour.
Having ME doesn’t mean I can’t do things, but it does mean I shouldn’t over do things. It also means some days I just need peace and quiet.
Friends and loved ones who understand this are the very best. Indeed some of my own friendships have grown deeper.
If you have any advice for friends and family, or if you have a friend or family member with ME who you’ve learned to assist, get in touch and share your tips with other Zonked Club members.