Meeting myself where I am

Mon­day was a long week­end here in Canada, and it was a beau­ti­ful one – warm, sunny, and smelling of spring. A friend called me up and armed with cam­era and sketch­book, we walked down to Vic­to­ria Park, a pub­lic park that runs along the edge of the har­bour. It’s pretty big, so you can wan­der around for quite a while.

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.