[Journal] On the sidelines

At the moment I’m going on two and a half weeks of the worst pain flare I’ve ever had. I’ve needed help dressing almost every day, I’m having issues with basic movements and leaving the house is only for short trips. I haven’t been feeling the best emotionally,  as one would imagine.

To try and combat the bad moods, I’ve tried to make it along two sword fighting classes each week. Tonight I realised that I only had about a 30% chance that I could get up and fight, despite buying my gear (part of which doesn’t actually fit me. Yay for being a human chode) and I was already feeling shitty about it but I was dealing. I think I really cracked up a bit when we all filed into the hall and the teacher saw me sitting on the walls. The two mothers that were here for their kids pulled the chairs to sit away from me which was fantastic, but then the teacher asked if I was going to join in. I politely shook my head. He doesn’t know the details of my condition so I can’t blame him. He said I could follow along with my arms. I shook my head again. Because otherwise you can bet your arse I would already be up there doing it.

It’s about half an hour through the class and I’ve retreated to sitting in the car. I can’t quite explain how much it hurts to be at something I love so much but to not be able to participate because my body has decided for the third week now that we’ve lost most of our independence in favour of pain and misery. I know Manthing loves it as much as I do, so I’ve declined his offer to take me home early. Realistically I’ve already taken my painkillers. Being home won’t help. It’s just one of those nights where I’m having a hard time coming to terms with my illness and how far it has taken over my life.

I mean, how the hell is any normal person supposed to react to this? “Yeah, look. You get to live with chronic pain for your entire life, but once you hut your 20s, it’s going to go hell for leather for everything you’ve grown to love and found strength in. And it’s going to be entirely unpredictable so don’t set your heart on anything.”

I could start the whine of “I never agreed to this” but it won’t fix anything. I’m accepting this as one of my downer nights and hoping that things will have improved some next week. But I also realised that I actually know nobody else with fibro. Not on a personal level. Not in a way where I would feel comfortable in talking to them about tonight and knowing that they probably  understand exactly what I’m talking about. Tonight is a bit rough. Tomorrow will be better. But sometimes you just want it today.

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10 thoughts on “[Journal] On the sidelines

    • If someone had told me that you could go through the stages of grief because of an illness before I got sick, I’m not entirely certain I would have believed them.

      You DO go through the whole stages of grief, and it happens multiple times in your life (I think I’m up to two?) but you learn to find the little things that help you get through each day. A lot of the time, they’re things we would have taken for granted beforehand. Like cat pictures and fart noises. Or a really good piece of brownie.

      • I guess im just new to this. I only received a diagnosis a few months ago. I had been unwell for years, struggling. The diagnosis was both a comfort and a nightmare at once. I jut feel like my life has fallen into fragments. My bf just left me. I feel like ive lost everything.

      • My advice is to check out some of the other fibro blogs on here as well as the fibro reddit board. I also ended up seeing a counselor just to help me try and wrap my head around it all. Trust me, so much or this is trial by fire. I can’t say it gets easier, but it will become familiar and you’ll learn tricks to cope. There’s also a massive community of support out there for you so you’ll never really be alone through any of this.

      • Thank you for your advice! I guess its all just learning and adapting, and that takes time and patience. Im definitely finding there are a lot of fellow sufferers who are amazing and inspiring!

      • Yeah, the patience has been the hardest lesson for me. You sometimes feel like you’re moving at a snail’s pace but you soon learn how to work around your body and what your limits are. There are some utterly incredible people out there and the collective communities have an absolute wealth of knowledge that took me to school about my own conditions. Just remember that we are well and truly all cheering for you 🙂

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