People always ask me how I am. Usually I say “I’m fine,” or I might just say “pretty tired” because anything more is probably more than they need. But it’s not true. I am rarely fine. I am sore. And I am so. fucking. tired.

“Sore” and “tired” are such small words. Overrused. Weak. Almost meaningless, for me.

I guess this comes back to what I’ve written before, about the book How Does It Hurt? which explores the difficulty of communicating pain. It’s actually close to impossible.

The two major symptoms of my illness are pain and fatigue. They never go away. They are my constant. Sometimes, they are a little bit less, and I am able to push through them to do things. Sometimes, they are Fear Factor Ten and those times are not good.

“I’m sore” is complex because honestly it can mean anything from just my general everyday pain, which sucks but I can, as I said, sometimes push through it, to utterly excruciating. I mean, I haven’t given birth or anything so obviously it’s not anywhere that but it’s certainly not a fucking candy store.

Here’s an attempt at a Sarah Pain Scale:

1. This is just everyday pain that I can almost ignore
2. Everyday pain with occasional twinges
3. Everyday pain with ribs tightening
4. Everyday pain with ribs tightening and hips tightening
5. Everyday pain with ribs and hips and neck tightening
6. Above everyday pain. Ribs, hips, neck, shoulderblades on fire
7. As above, with the middle of my back starting to spasm
8. As 7, and by now my entire spine fucking hates me
9. Nope. Not doing it. Moving is not A Thing.
10. I’d probs be at ED.

Tired can also go upwards from from Everyday Tired, which used to be the sort of tired that I would feel after a full day of work. Now it’s just how I wake up.

Usually by the time you have to ask me how I’m doing, I’m going to be up around the 4-5 mark. I haven’t been at ten for a while. Ten is when I literally cannot hold my head up and I wonder how breathing can take so much energy. I remember being like this a lot when I got out of hospital. Truly, actually frightened that I would stop breathing because I didn’t have the capacity to move my lungs.

Fatigue is actually almost as difficult to describe as pain. This may be really shitty of me, but I just feel like when I say I’m tired, some people might compare it to when they’ve had like a super long day and little sleep, and I remember that feeling, and this is not like that. This is like your entire body has been reduced to a noodle. Lifting your hands takes work. Speaking takes work. Forming thoughts takes work, let alone communicating them to anyone. I can’t make decisions. I can’t deal with emotion, so I just blank out. It’s really hard for the people around me. I don’t want to be like this for them. I can feel myself retreating, going into survival mode, and they don’t know what to do. But I literally cannot. There is a wall. It’s really scary, and really sad. I wish so much that I were a better friend, the vivacious person I used to be, someone who could promise to be there for others whenever they needed me. But I can’t promise that.

So what I really need to say now (and I will make a separate post to say it again, a million times) is the hugest fucking thank you in the world to the people who donated towards my new mattress. If you don’t know what I’m talking about, here’s what happened.

I came back from Wellington and decided it was time to get a new mattress. My old one was cheap when I got it and had been uncomfortable for a long time, and someone else had been sleeping on it while I was gone, which triggered my OCD about germs etcetera (no immune system!) The funny thing about being so fricken tired is you’d think it means I sleep well. Hahahano. I have chronic insomnia driven by pain and anxiety.

So, being ridic broke, I got a mattress on special from the Warehouse. And – yeah, you guessed it – it was awful. Stupid move on my part, really (not The Warehouse’s fault, I get great stuff from there all the time. I should have tested it). Feeling pissed and upset at myself and my brokeness, both in the wallet and the spine department, I tweeted about wishing I had the money for a mattress topper.

Some amazing, incredible, wonderful people got together and fundraised for me. And overnight, I not only could get a topper – I could get a whole new mattress. I couldn’t even CRY because I was so overwhelmed. I just sat there looking at my phone like WHAT. BRAIN DOES NOT COMPUTE.

So, long story short, I have ordered a new mattress. I went to Brownies Mattress Direct and the people there were so, so lovely. I have absolutely no problem giving them a plug here. I explained my issues and they helped me try out a big range of options. They also helped me choose an amazing pillow – I have never had a pillow that cost more than $5! And they made it all affordable for me.

Like I said, I’ll write about this again, probably when the mattress arrives and I can take a picture of myself blissfully buried in it. It’s like a fucking CLOUD.

Thank you, everyone, for helping a tired girl out. You restore my faith, and, hopefully, my dreams.