…and getting it back again

A hand, emerging from a body of water, clutching a lit sparkler.

Happy belated World IBD Day! What better time to get back into blogging? If you read my last post, you’ll know that I was in a bad place in the early months of the year. Now? Well, not much has actually changed, honestly. I’m still experiencing the same symptoms as ever. Infliximab might as well be saline for all the good it’s done me, after six months/five infusions. Exam season is upon us, stress is oozing out of my every pore, and I have an MRI booked for June because my bloods aren’t showing any kind of improvement. By rights, I ought to be feeling as terrible as I did in February. But now things feel different, and I’m in a better position to explain exactly what was going on in my head then (and now!). I want to document everything – the good and the bad – and that starts with explaining why I’ve been so silent these last few months.

At the time, I kept shying away from telling people how bad things had become. How do you even start a conversation about it? It’s not as if I could have opened with “hey, terrible weather we’re having, I keep having spontaneous thoughts about my own death”. Even when I had the opportunity, I didn’t want to take it. I swallowed my pride and begged my parents to let me spend some time at home, which I’m normally reticent to do, as my illness forces me to spend more time at home and less time on campus than I’d like. I even seriously contemplated withdrawing (temporarily) from university. That was the point at which I realised wow, things really are that bad, when I was considering withdrawing myself from the one thing that still gives me a sense of pride and self-worth. But I didn’t feel like I could do my degree justice, if I spent every night crying and every day cloaked in dread. Frazzled by indecision and self-loathing, I fled: escaped back to the sanctuary of home, to my parents.

 

I spent every night trying to find the courage to talk to them about how I was feeling. But it eluded me. In true Emma fashion, all I did was push it to one side and try and focus on other things. At least while I was at home there were other things: the dogs, the uncharted territory of the countryside my parents just moved to, the excitement of unpacking boxes and the cushioning safety that being at home always brings me. At university there was nothing but cold despair and the constant crushing feeling that every action I took was the wrong one. I always feel better when I’m at home – which is part of the reason why I find it so difficult to talk about my struggles with my parents, I think. In my peace and contentment, things like crippling despair and guilt don’t seem real. They’re like the memory of an illness, months past: of course it was terrible at the time, but who can remember that far back? The human brain can’t hold onto pain once the moment has passed. It fades away, as quickly as water rushing down the drain.

 

So what changed? It seemed to happen so quickly, almost in a single day. One day I was weeping in the shower and trying to find a reason to get out of bed in the morning, and the next… suddenly I was alive again. That’s how it felt: like I’d been a shell, only the negative parts of my psyche left behind in my body, with happiness and hope off on an adventure somewhere else. And then one day, looking at a patch of daffodils on the grass, I realised that I could feel hope, when I thought I’d lost it entirely.

 

It coincided with the onset of spring. The equinox itself was uneventful, I remember: cloudy, and I didn’t venture outside. “If this is spring, I don’t think much of it,” I remember thinking. Oh, how wrong the world was to prove me. Within days it felt like the sun had burst open and rained down its bounty onto Earth: flowers, everywhere, in all the nooks and crannies, and suddenly everything smelled like freshly-mown grass and the sun on my back felt like a hug. Everything is so suddenly and absolutely alive in springtime, and it was that that made me think that maybe, just maybe, I could stay that way too. Shuck this chrysalis of sadness and bloom into something beautiful. Mixed metaphors, maybe, and cliché too, but spring is the season for that: words from the heart and dramatic exclamations and, above all, intense feeling – the antithesis to all that I had been experiencing in the previous weeks.

 

The point I really want to make with this post is that nothing actually tangibly changed in my life. My IBD is still flaring horribly. My quality of life is awful. Most days I don’t leave the house, I am afraid of most of the food I put in my mouth, and I don’t have the energy to walk more than five minutes at a time. I wear sanitary pads constantly as a guard against anal leakage. My migraines are getting more frequent, and now they make me throw up, too! All of this together sounds pretty terrible. And I’d be the first to agree that yeah, it’s bad. But here’s the thing: when I’m not beset by depression, I can cope with those things. I can even find a cheeky grin, a shrug, and an insouciant joke about them, on a good day. So don’t underestimate the impact of mental illnesses, even when someone has a physical illness in conjunction. The physical illness isn’t necessarily worse because it’s more tangible.

 

As much as I always loathed this cliché, I can’t help but admit that it’s true: it really is darkest just before the dawn. If you’re struggling at the moment: this is me telling you that you’re allowed to cut yourself some slack. Life is hard enough without your brain waging war on itself into the bargain. Even if all you do is open your eyes in the morning and then immediately close them again? You’re doing just fine. You’re here. You’re still here. That’s all that matters. One day (and I hope it’s in the VERY near future) something small will catch your eye and you’ll realise you feel alive again, all at once. So keep going, one day at a time. I’m rooting for you!

Photo by Kristopher Roller on Unsplash.

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