Sometimes I want to scream from the rooftops:
My chronic illness is extremely hard work. I’m doing the best I can and most of the healthy people around me have no clue what I am going through.
It sounds very melodramatic I know, but sometimes a good complain in my head is enough to buoy me through things.
So I feel very ambivalent sometimes when someone says I make ill health look so effortless. On the one hand it’s disappointing to hear that sometimes that I make it seem so easy. On the other I’m secretly glad that I am able to cope – somehow – despite the fatigue making it feel like my immortal soul is trying to slip out of my eyelids I am so tired.
I wouldn’t wish ill health upon anyone, but sometimes despite all my positive thoughts and goals to help me cope I wish I could reach out, touch the nearest person around me that I’m not getting through to with my impassioned pleas to understand chronic illness, and let them borrow my pain for a while.
Then rationality makes me realise if I had this opportunity how difficult it would be to take that burden back from them, and how this is my burden to bear.
Every single day is a trying effort with endometriosis, I try to push it aside as far as I can until it chases and pins me again. I’m managing, but boy is it hard work.
Sometimes it’s hard to keep going
When you’re ill all the time it’s really hard not to lose sight of yourself. To lose confidence in your abilities. To not feel like a disappointing pile of missed opportunities rather than a human being who has more than the average person has to cope with.
Every day is a battle with a lack of energy and pain, not to mention the expectations of those around you. Worst still are your own expectations as you struggle not to gauge your current wellbeing against who you used to be before you got sick.
As such being chronically ill is can be one of the hardest jobs you’ll ever have. It equates to working life quite well actually.
Illness takes a great deal of time and energy out of your day and has to be tolerated as a part of life. Having an incurable, invisible chronic illness is a big responsibility. Illness means you have to manage your life as it becomes more like work and less effortless.
An illness like endometriosis can mean that every day presents a new challenge. I might be sick to my stomach when I wake up, my abdomen might twinge and ripple with pain, I might not be able to get up at all due to crippling, weighty fatigue.
No two days are the same with a chronic illness, many are variations on a theme. A little pain here, nausea that subsides, tiredness that doesn’t lift after the longest naps. A growing and shrinking list of variables that are slung randomly onto your body. Waking up simply means tweaking the recipe, maybe losing the sickness, but growing the pain. Or pain that disappears only to be replaced with the sinking sadness of exhaustion. Waking each morning just resets yesterdays problems spawning something more.
So in my head my endometriosis feels like my second job, another stack of baggage to sit next to the single weighty suitcase that others carry around.
An example of why I cope
The last thing I want to seem like with my posts on how to cope with endometriosis is that living with chronic illness is easy. Certainly not, every single day is a concerted effort on my part. Planning my week carefully based on the energy I have, looking forward enough to see where the potential problems in my week are likely to be and navigating around them.
Some days I am on the cusp of throwing up, and somehow I muddle on and lull my brain and body through the inane details of the day, back to calm.
The pain leaves me sometimes, but only when I prepare myself carefully. Reducing how much I carry, going on slow, careful walks. Cycling when I feel able. Never overdoing things. The pain is never completely gone, instead it sulks quietly somewhere on my body waiting for the moment when I least expect it to surprise me.
If I seem to be managing well, it’s from quiet, careful deliberation week by week. Navigating my illness feels like I’m trying to map an uncharted sea when my boat needs repairs and each new wave changes the landscape.
Life is tiring, but life is still good, and it’s still possible to cope somehow despite all the hardship. And it’s that profoundly simple rhythm to the illness that keeps all of us going.