Something I’ve found hard to come to terms with about this illness is when life goes back to some sort of routine. The rhythm of the week settles. The medication is doing what it does. The acute dramatic awfulness has subsided. The depression is still there, and I’m still impaired, and normal life goes on.
You forget you’re sick. You limit yourself to one or two things a day, and then get perplexed as to why you need to sleep for four hours in the afternoon. Or why you can be staring off into space and suddenly have a crippling thought out of nowhere that is breathtaking in its bleakness. Oh that’s right. Brain not working.
People forget you’re sick. You don’t want to be the poster child for depression, and it’s boring talking about it all the time. But people assume because you show up that you must be okay. And you don’t want to be rude. But you don’t want to pretend that everything is fine. But what do you say when someone asks how are you going? How’s work? What’s happening?
The thing that concerns me about this low level of functioning is that I’m so limited and yet will I be able to get the help I need? If I’m not hospitalised, is it not serious enough? Will someone looking at my case assessing whether I can get financial assistance be able to understand? Or is the fact that I can do the bare minimum considered not impaired enough? Even though I’ve pared my life back so much to this skeleton of what I can cope with, just stopping everything isn’t good – I need things to get up for, I need things to do to keep me going, to look forward to. But…
Normal life keeps chugging along. It feels like everyone else I know is rushing down whitewater rapids and I am on the bank, tentatively dipping my toe in but not wanting to get swept away. The busyness of the world is dizzying.
And in the midst of all this, I hear God telling me to be still. I don’t need to do anything. I just need to be still. The panic rises in me, I clutch at anything else for comfort, security, assurance and he patiently says, just be still and know that I am God. Trust me.
Being still is really hard. Trusting is really hard.
I led church this morning. It was a fight to get there, but I could feel the switch flip as I stepped up to the lectern. I smiled, I was light, I kept things moving. It was a good service. As soon as it was over the switch flipped back and I went and sat in the car until mum was ready to leave. I wasn’t impatient to go or anything, but I just couldn’t handle any more sensory input. I just couldn’t face a single person. I couldn’t smile or answer questions.
But because that’s all most of those people at church see — me for an hour and a half, smiley and chatty, or singing and playing — they are shocked when they learn that I’m not doing well. “But you don’t look sick”, “but you seem so vibrant”, “but…”
I rallied for a relaxed lunch with a couple of friends, those precious types who we can be ourselves around and they can be themselves around us. The type who, as soon as I announced “I have to go now”, understood and didn’t see it as rude. When I start to flag, I have to calculate how much time I have left, like a phone battery. I think I’ve got about half an hour of charge left. It will take 25 minutes to drive home, I’m already tired…we need to go. Now. I guess it’s good that I’m getting better at recognising my limit approaching and can take action?
Mum and I are going to Sydney this weekend. It seems like forever ago that I booked the tickets because I really wanted her to see Come from Away, then it was cancelled last year, and now the rebooking has come round. I’m excited to see the show and the few people who’ll join us, but I haven’t arranged anything else to do. After my last trip where I planned lots of peopley things all over the place and then took a week to recover, I think it’s wiser just to kind of stick to the city and see what happens. Maybe I’ll change my mind. Maybe I’ll just sit in Hyde Park. Or go to the Art Gallery. Or…not.
I just have to be still.
Things I am grateful for in the midst of this fog
- Friends who understand
- The prospect of going to see a wonderful show
- Mt Gnomon pork, fennel and paprika sausages from Harvest Market (SO good)
- Seeing/hearing the TSO basses at Design Tasmania yesterday
- Rain pouring outside while I am lying under a blanket, with a book and a cat on my tummy
- That His eye is on the sparrow and I know He watches me