THE BLOG

Living With Chronic Illness Is Relentless

14/11/2016 13:04

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I've been awake since 3am. I only went to bed at 12.30am, so that definitely does not add up to enough sleep! This is a fairly normal occurrence for me, especially at the moment, and it's soooo frustrating! I woke up because of the pain in my ribs/abdomen, and I couldn't fall asleep because of it, too...

Waking up because of pain is the shittiest way to wake up and start the day... A friend recently fell off her bike and explained that she had been woken up the night before by the pain in her leg. She told me that it was such a horrible way to be woken up, and I explained that this is how I'm woken up most nights or mornings... And if i'm not waking up because of the pain, I feel pain as soon as I have woken up in the morning.

Waking up and being in pain straight away is beyond depressing and demoralising, but I'd always pick this one over being woken up by the pain. Both options are so tough, lonely, and exhausting, though. They also feel indescribable. Words somehow just don't do being-in-constant-severe-pain justice at all.

For a while last year I noticed that I kept waking up in the morning hoping things might be different... This was more because of emotional stuff that was happening at the time, and for the months beforehand, but the experience was very similar to what I'm experiencing now, except at the moment I'm feeling this hope-for-difference because of the extreme pain I'm experiencing. Last year I was desperately struggling with grief and anxiety (as well as other chronic illness related things!). Each morning I would wake, hoping things would be different, and each morning I felt so sad, heartbrokenly disappointed, and desperately frustrated that it wasn't... It was exactly the fucking same over and over again, each day, every day, for ages!

When I prolapsed two discs in my back in 2013, I remember having this same thing: 6 months into being completely bed-bound, I was waking up every day with a heartbreaking hope for difference, and feeling completely crushed and exhausted every morning that it wasn't, every time I was still waking up to the same slog of navigating intense loneliness and the constant challenge of somehow getting what I needed each day when I could barely get out of bed.

Something eventually shifted, as something always does, but it wasn't that the symptoms completely eased (the grief/angst still rear their head every day, and my back still give me troubles), it was just that something else -- something more intense -- took over dominating my experience.

I was struggling with severe concussion earlier this year, which crippled me for about 4 months. It didn't get better, it's still very present every day (I discovered I have a brain injury!), but it's just that this pain in my ribs/abdomen developed and took over as being the pain & symptom that was shouting the loudest... When my ribs/abdomen pain is raging, I don't feel my severe joint pain (or much else) because I can't -- I'm buckled up, struggling to breathe or move beneath the agony. But when my ribs/abdomen pain reduces from a 9/10 to a 7, I feel my joint pain again...

Ugh. Explaining exactly what is happening, and how many symptoms I'm navigating and have navigated for ages now, always leaves me feeling angry, frustrated, overwhelmed, exhausted, scared, helpless, and really fucking heartbroken and sad... Living with chronic illness is so, so, hard. So hard. I often can't believe how much I'm dealing with, so I struggle to trust other people would be able to comprehend it, too.

Surely someone can't have that many things go on and still be trying to exist?! Is that what my head says... I immediately know that isn't true, but I often talk myself into feeling suicidal because I'm like, surely I can't keep -- and shouldn't keep! -- fighting when I'm experiencing all of this? Surely I should just want to give up and stop fighting to live...? I end up feeling embarrassed that I continue to fight despite my experience, that I haven't just gotten the hint yet... I feel like an idiot that I'm still trying so hard to live when actually things are just so damn hard in this body of mine.

But that is all talk from my inner critic -- it isn't truth, it just feels like truth a lot. Life is difficult -- it is beautiful but it is fucking difficult, too. And we all have differing levels and types of difficulty that we experience, and in so, so, many ways, my life is nowhere near as hard as some peoples in the world.

I want to continue to reframe this hard time I give myself about something that is actually beautiful -- the way I continue to fight despite everything I experience, and the way that these experiences actually fuels my experience. It shapes my writing, my activism, the projects I begin... Friends often point out that it's amazing how I create so much from an experience that actually could bring people to the floor and leave them there...

Our heads, our inner critics, find material for criticism in the most beautiful and inspiring parts of ourselves. The characteristics that actually need and deserve celebration become an area that I pound myself with criticism and comparison about.

But both, especially the latter, just blind us to our experience, our truth: what is actually happening and how we are dealing with it. We get blinded to the fact that we are brilliant. Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it's really fucking difficult.

Take time to spot the ways you deal with your experience that deserve and need celebration (in my opinion, simply just surviving each day deserves celebration!). Get friends to help you do this -- you can guarantee that they will have a different (and kinder!) opinion about how you're dealing with what you're experiencing.

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