Living With Chronic Illness Is Relentless
By Amani Omejer / huffingtonpost.co.uk
Nov 14, 2016

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.

0.0 ·
0
Trending Today
How Comedy Can Disarm Bullies
3 min · 4,943 views today · As long as you're funny, it can get you out of almost anything - even getting mugged, as co-founder of Between Two Ferns Scott Aukerman recounts. Unfortunately, not everyone...
How a Lack of Touch Is Destroying Men
Mark Green · 2,688 views today · Why Men Need More Platonic Touch in their Lives
How Independent is Hollywood?
4 min · 2,368 views today · A huge number of big-budget Hollywood films, especially those featuring war, conflict or terrorism, are influenced by Hollywood's close relationship with the United States...
Immigrants For Sale (2015)
33 min · 2,063 views today · The detention of migrants has become a multi-billion dollar industry in which immigrants are sold to the highest bidder and traded like mere products. The Corrections...
Globalization Makes No Sense
Chris Agnos · 1,770 views today · When I lived in San Francisco, I often would marvel at the movement of goods through the ports across the bay in Oakland. Full container ships would enter the bay one after...
Your Lifestyle Has Already Been Designed (The Real Reason For The Forty-Hour Workweek)
David Cain · 1,558 views today · Well I’m in the working world again. I’ve found myself a well-paying gig in the engineering industry, and life finally feels like it’s returning to normal after my nine months...
Proof of Evolution That You Can Find on Your Body
4 min · 1,325 views today · Vestigial structures are evolution's leftovers — body parts that, through inheritance, have outlived the context in which they arose. Some of the most delightful reminders of...
John Lennon's "Imagine," Made Into a Comic Strip
John Lennon. Art by Pablo Stanley · 1,173 views today · This is easily the best comic strip ever made.  Pabl
Today I Rise: This Beautiful Short Film Is Like a Love Poem For Your Heart and Soul
4 min · 1,034 views today · "The world is missing what I am ready to give: My Wisdom, My Sweetness, My Love and My hunger for Peace." "Where are you? Where are you, little girl with broken wings but full...
A Hauntingly Beautiful Short Film About Life and Death
5 min · 762 views today · The Life of Death is a touching handdrawn animation about the day Death fell in love with Life.
Touch Isolation: How Homophobia Has Robbed All Men Of Touch
Mark Greene · 649 views today · Homophobic prohibitions against male touch are hurting straight men as well.
How Wolves Change Rivers
4 min · 576 views today · When wolves were reintroduced to Yellowstone National Park in the United States after being absent nearly 70 years, the most remarkable "trophic cascade" occurred. What is a...
Without Saying a Word This 6 Minute Clip From Samsara Will Make You Speechless
6 min · 521 views today · Can you put this video into words? It's a clip from the phenomenal documentary Samsara, directed by Ron Fricke, who also made Baraka.  If you're interested in watching...
Compassion, the Antidote
Martin Doblmeier · 495 views today · Thich Nhat Hanh has published nearly 100 books and is one of the best-known teachers of Zen Buddhism in the world today. In the early 1960s his practice of what he termed...
Where the Term "Redneck" Came From
15 min · 453 views today · If you don't know this story, you'll never look at the word the same again.  This is just a window into the sometimes shocking, subversive and untold history of the United...
Stunning Small Homes Form Part of a Communal Compound for Best Friends
Lighter Side · 453 views today · If you’re lucky enough to have longtime friends even as an adult, then you know probably already know how much it means to be able to spend time together. Maybe you even have a...
The Foiled Bomb Plot in Kansas That Didn't Make Trump's Terror List
5 min · 298 views today · When a plot by a pro-white militia to bomb a Somali mosque in Kansas was foiled by the FBI last October, the aborted conspiracy received little national coverage - nor did it...
10 Words Every Girl Should Learn
Soraya Chemaly · 235 views today · "Stop interrupting me."  "I just said that." "No explanation needed." In fifth grade, I won the school courtesy prize. In other words, I won an award for being polite. My...
The Top 100 Documentaries We Can Use to Change the World
Films For Action · 231 views today · A more beautiful, just and sustainable world is possible. Take this library and use it to inspire global change!
The White Man in That Photo
Riccardo Gazzaniga · 208 views today · Sometimes photographs deceive. Take this one, for example. It represents John Carlos and Tommie Smith’s rebellious gesture the day they won medals for the 200 meters at the...
Load More
What's Next
Like us on Facebook?
Living With Chronic Illness Is Relentless