Well, we “wandered around” for over 4 hours. And then later on, when I saw it was going to be a beautiful sunset, I walked down there again to take some more photos. All in all, I walked over 10km by the end of the day (that’s 6.2 miles for you Americans.)

Needless to say, yesterday I was mind numbingly exhausted. I could barely move by 2pm and slept for 2 hours that afternoon. The evening wasn’t much better. About all I managed to do was improve my high score on solitaire.

Days like yesterday are hard. They set off so many panic buttons, and because I’m already so exhausted, I struggle to keep myself calm. Some moments I just want to run around the house screaming my head off, except I’m too tired to get off the couch.

Here’s how my thoughts tend to go:

“Oh my god, we’re so tired. Why are we so tired? We shouldn’t be this tired. What if we’re this tired forever?!“

“We’ve been staring into space for hours. We’ve done no work at all. This is stupid. We should be working.”

“We bought lots of groceries today. I should cook a nice meal. I shouldn’t waste the nice food we got. But all I want to do is make  mac ‘n’ cheese. I’m too tired to cook anything else. My mother is going to have a conniption if she finds out I made Kraft Dinner and not a full meal with meat, carbs and 3 servings of vegetables. How could I be so irresponsible as to make Kraft Dinner?“

“Why haven’t I cleaned the entire house instead of just sitting here?!“

“What is wrong with me? Why can’t I just snap out of this?”

“I am so irresponsible. I shouldn’t have gone out yesterday. This is all my own fault. I’m stupid stupid stupid. I should have been responsible and stayed at home. It doesn’t matter that it was a nice day and you wanted to take photos and get out of the house. You are supposed to pace yourself and be smart and be responsible and not have any fun because fun is dangerous.“

This litany usually means that by the end of the day, I’m so frustrated and miserable, I only want to punch things. Which doesn’t exactly help me to feel any better.

Practicing gentleness

It’s so easy to get stuck in these thoughts. It’s so easy to tangle yourself up in the guilt and the blame. I’ve done it a million times. Every time it happens, I have to relearn patience all over again.

What I do try to do in these situations is remind myself that my life isn’t “normal”. I find myself trying to play by the rules of someone with higher energy levels and then I berate myself when I can’t do that.

Sometimes… it’s okay that I have to cook Kraft Dinner and not a proper meal with meat and veggies (sorry, Mum.)

Sometimes… it’s okay that I didn’t clean the entire house instead of sitting on the couch (again, sorry Mum.)

But most of all, I have to remind myself that it’s okay that I overdid it. That I’m allowed to have fun and that I can’t actually make myself more sick. Sure, if I walk 10 kms, I’m going to certainly feel shitty the next day. But I can’t make myself relapse. Only my body and the disease itself will dictate true relapses. (No, I’m not pulling facts out of my ass – my specialist and I had a talk about this when I was 16 and I asked if it was my fault that I kept getting worse.)

I blamed myself so long for being sick – I didn’t take enough vitamins, I didn’t try every single miracle cure under the sun, and when I did try those miracle cures, they didn’t work because I wasn’t being “positive enough”. Everywhere I turned, someone else was explaining how it was my fault I didn’t miraculously recover. And god forbid, I go out and do anything fun, because then I’m just being horribly irresponsible, and am I trying to make myself worse?

So I have to spend a lot of time reassuring myself that it’s okay for me to have fun. It’s okay that I went out and did this thing that cost me lots of spoons. I’ve got more spoons than I used to, and I’m grateful for that. (If you have no idea what I’m talking about, click that link & read that article. It’s beautiful and moving and will help you to understand what it’s like to live with a chronic illness.)

It’s on days like yesterday where I really practice meeting myself wherever I am – in pain, exhausted, miserable, and afraid. It’s where I learn to hug myself, and reassure myself that yeah, it’s okay that I’m upset and it’s okay that I’m scared and it’s okay that I’m mad at myself and it’s okay that I had fun yesterday.

That really, everything I’m feeling is okay. And more importantly, that underneath all those thoughts and the guilt and the blame…

I’m okay.