Is this because of snapchat? I barely use it, because the idea of messages that disappear is contrary to my needs after I talk to people. I want to be able to see what was said later, thanks. Those interactions matter to me and I want to be able to remember them.
A bunch of my joints feel like they have been dislocated. Damn lupus. Still no gp, and no-one is treating me. Days like today it just hurts to breathe, move. So while I wrote a lot and I am in process with more, and ran errands and did many things I should probably write about, my body is pretty slow. Trying to take it easy. This may be a shorter post, or maybe not, since I’m doing this instead of other work because I’m feeling off kilter and don’t really feel up to doing much.
Why is this happening to me? Well, I did protect myself when I went out yesterday, but it’s possible I crossed paths with someone who has a flu virus/cold and that triggered my immune system. Or maybe just too much out. Or just for random unknown reasons.
Sometimes people wonder where I am when I am obviously writing or working, but unable to hang out. Mostly it’s being a night owl, and knowing that if I leave the house to hang out I am setting myself up for a couple of days in bed. People think I’m exaggerating or that I can just suck it up. I’ve heard people say to me “well everyone has stuff going on”, or “we’re all busy”, or even “but it’s only for dinner”. And honestly I wish that was true.
I’ve tried to slowly increase my tolerance, and I do at times push my body beyond where it’s comfortable being or go out to events. And the final result is always the same. So I’m learning how to take care of myself, but I often feel that people who see me once in a while when I look fine assume that I’m just “malingering” or using my illness as an excuse.
Truly every outing/interaction with people has an energy cost for me that is higher than most, and losing a few days of work when you work for yourself is crippling and has high costs. It’s not a sustainable model. I can work at events, and I’m fine, and that’s part of how I make my living. But after the event, I know I will have to go into my cave and recharge/medicate/heal and that I will feel the effects.
When I was younger I was super outgoing and social, and I miss that sometimes, and I miss my community/circle of friends who I spent all my time with, but I still have to get things done. And that can be hard for people to understand. Everyone wants to be the most important thing in my world, to know that they matter more than work, or whatever else is going on. I get that – but please remember our hang out time costs not just the hour or evening, like it does for you, but also the next few days, or depending on what we do, the next week of my life.
So I’m not asking myself “can I afford to take a few hours off”, I’m asking myself, “can I afford to take the night/day off, plus schedule two days of recovery time?” And when weighed against the demands of work, often the answer is “no.” And that’s not personal. That’s me feeling pressure to get things done and keep moving forward slowly with my life, and harnessing the moments when I do feel great, to get further ahead. It’s a challenge for me – because I don’t like making people unhappy, and I get lonely, but I have much less energy. I love keeping in regular contact via text/phone/email tho – and facebook messenger has been a godsend. So if you miss me and want to chat – try texting me or sending me a quick email and I’ll try to get back and connect.
I am pretty happy with my life. I don’t love how sick I am, but I try to have cool adventures anyway. But I feel torn – I know that life is good, but there is some deep concern about wasted time, which I know wasn’t really wasted. But I am also slowly pulling myself forward. 🙂
Things I’m thinking about today:
Anthropomorphism: I am always trying to figure out what is the best way to refer to our non-human companions – they are people too – as wise, as brilliant and human persons have funny beliefs about how we are somehow better. Mark and I have been struggling with the scientific concept of anthropomorphism, and it’s good to see that some scientists are fighting back and are beginning to discuss the concept of anthropodenial. Animals include humans, and other animals/creatures here do exhibit “human” like qualities because they have those aspects inside of them.
I don’t have kids, but both of our kittens are amazing people in their own right. And they are not like us, but that’s part of the intrigue. It doesn’t make them any less persons deserving of rights.
Things you can do to help the planet in general today:
- Bell internet takeover: Donate to support SumOFUS if you want fight to protect net neutrality in Canada.
- Petitions/Lyme at border: Holy hell this is going to kill someone – canada customs have implemented a policy about prescription drugs crossing the border into Canada that has crippling implications for anyone who is being treated abroad and has lifesaving drugs they need to bring to Canada. Our system isn’t great, and I know many people who are travelling for this particular reason. The new policy allows border guards to take away drugs prescribed in other countries legally, if they were not previously prescribed in canada. Yes, we’re talking about legal, prescribed drugs that you paid for, regardless of their necessity to your life. I have a rant about this in process – but saw another email about it today – please please sign the petition and call your MP, this is going to kill someone – who needs their insulin or other meds and has them taken away at the border. Because getting to see a doctor somewhere like BC for example isn’t as easy as making an appointment and getting treatment can be even harder.
Ironically in the email below the Lyme update, was one for Westjet’s birthday sale – get flight discounts and go somewhere cool?! Just don’t bring drugs back :(.