As you would have gathered from Twitter if you follow me – or if you were there! – yesterday was the Nelson Tweetup.
It was also a pretty bad day for me. Not the worst, obviously, because I managed to leave the house, but not the best. I didn’t manage to get out of bed til round 12.30, and even then I just moved to the couch.
I was really glad to see my friend Sarah blog about acknowledging bad days. I put a lot of energy into being strong and positive. It’s important, because if I’m not positive, it’s a slippery slope. I don’t want to wallow in what’s happened to me. I don’t want to feel sorry for myself, and I definitely don’t want anyone else to.
But some days, I can’t help it. Yesterday was one of those days. I stood in the shower, shaking from exhaustion, trying to get ready to go to the Tweetup. Some days, I feel like I don’t recognise my own body. It’s like looking at a stranger.
And yeah, I cried. I cried because it shouldn’t be so fucking difficult just to go for a drink with some friends. I cried because I was meeting a lot of these people for the first time, and this was not how I wanted them to see me. I’m embarrassed about how I look. I wanted them to see the old me, full of energy. I feel like a shadow of my former self, like a ghost who’s just going through the motions.
Yesterday I got a job offer. I’ve had several since I got sick, and saying no never gets any easier. There’s so much work I could be doing, so many awesome projects. I’m missing out on so much, and I absolutely hate saying no to people. But the alternative is doing a half-assed job because I’m too unwell to do it properly, and I would never let someone down like that. I would never let myself down like that.
The Tweetup was amazing. It was the first time I’ve felt like myself in months. It was so lovely to meet all these people that I’ve been talking to for forever, and who have been so supportive of me. It took a lot of energy to have lots of conversations with everyone. I had such a wonderful time, and I didn’t want to leave, but I had already stayed too long and my hands were starting to shake, which is a really bad sign.
I fucking hate that. I hate that I can’t even go two hours having fun, without my body betraying me. Once I got home, I had to go immediately to bed. Everything ached, I had a migraine, I wanted to be sick, and I was so tired my eyes were crossing.
And part of me just wanted to howl, like a three year old, ‘It’s not fair!!!’ It’s not fair that everything I loved about my life has been taken away from me. It’s not fair that I can’t even go for a fucking drink. It’s not fair that I have to sit down in the shower because my legs won’t hold me up. It’s not fair that everything I eat hurts me, that I spend most of every day fighting down nausea. It’s hard right now. It’s hard just to write this post, and afterwards, I will have to lay down again.
I’m 20 fucking 6. And I have to have a nap just from using the computer. My life feels utterly unreal.
But I will keep fighting. If I don’t – well, the other option doesn’t bear thinking about. And I will remember how lucky I am. Yesterday I re-met, and got to meet, some really really wonderful people. Being ill has, amazingly, brought so many awesome new friends into my life, and reminded me of the ones I already had. I’m so grateful. I’m so utterly grateful.
Thank you to everyone who came last night. You made a big difference for me, and I really, really appreciate it.