Choose Your Language:
Posted by: The Sumaira Foundation in NMO, ON, Patient, TM, Voices of NMO
I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind and feel throbbing pain everywhere…I was diagnosed with Neuromyelitis optica (NMO) also known as Devic’s disease (similar to MS) last month after my MRI scans showed optic neuritis and brain lesions — and it’s completely shattered me.
Seven years ago, I experienced the same heartbreak in a cold office when the doctor told me I had systemic lupus. No matter how long you’ve lived with chronic pain, you’re never quite prepared for the next invasion of torment. The pain from NMO fused with the suffering of lupus are unbearable at times. I feel ambushed. Walking is a joke as my knees have turned to brick. The pain is unreal. All I want to do is curl up in a blanket, take pain medicine, and sleep all the time (if I could sleep). At least when I’m sleeping, I’m not crying from the unbearable waves of pain or feeling the sting of missing the things I could once do normally.
Living with chronic disease wrecks you emotionally and it devastates all parts of your life. I’m a teacher, and I’ve missed sixteen days of work and it’s barely November. I have to apply for disability in my twenties and stay on a life-long treatment of IV infusions.
I live in a world of uncharted, scary possibilities; the only known thing being the familiar pain I know I’ll face the moment my eyes awake in the morning.
And I’m done . . . I’m done apologizing for not showing up when I’m in the pit of hell swelling with tears every hour. I’m done pushing through physical suffering. I’m done pretending I’m OKAY; being able to walk without showing my pain is a skill I shouldn’t have mastered. I’m done pretending that I’m not absolutely wrecked by this physical, mental, and emotional assault on my body.
I’ve no reason to miss work. I love what I do and I’ve worked damned hard to be a teacher. Forget sick days, I’m just losing income now. But I can’t worry about things like that. I have to have an unrelenting faith that things are going to work out. That the things that I desire to do now may not happen today, but they will. That I will be back on my feet, warm mug in hand, ready to face anything in my day — pain-free.
I saw this on Twitter once: Chronic illness: no one gets it, until they get it.
Pretty accurate I’d say. I can’t worry myself with what people think of me. They’ve no idea the pain is still there even when I’m smiling. That the pain is still within, even when I’m not talking about it.
I don’t want my struggle to make me a victim. I want my battle to give others the courage to keep going even if that means — not going. Not showing up. Not saying yes to every — single — thing. Staying in. Crying if you need to. Putting comfy clothes on and eating more chocolate than usual. Putting you first.
People need to understand that saying no takes just as much courage as saying yes. It hurts us to say no — to not show up because we’re struck with an incurable illness that we can’t control. It hurts us to not show up to the birthday party you had planned or the coffee date to catch up on life. We wish we could have control over when our pain strikes us, but we never will. It knocks, comes in uninvited, and changes everything we thought we’d be doing. Sometimes it’s manageable, most times it’s not. In a flare, it’s usually a high pain day, week, or month — and we’re probably staying in our PJ’s.
The thing with a chronic illness is that it’s not going anywhere. It’s made it’s incurable home and we have to arrange our furniture — some things are thrown out, some things collect dust, some things get broken.
Chronic pain isn’t a cry for attention. It’s not something we ask for or choose. Chronic illness is something that happens. It’s a disability. It’s real. The unknown is scary and most days, we don’t know how we’re going to manage the pain, we’ve just learned to. But we can’t always be strong.
So, I’m done apologizing for not showing up when I simply cannot. I’m done being ungentle to myself and forcing my body to push through the pain when every second it’s begging me to just stop. I need to heal the way that is right for me. It’s the only way I’ll get better — and I’m done apologizing for it.
