Stream of Conscience: The Chronically Ill Are Tougher Than Nails

Us spoonies are tough stuff. We deserve more recognition for how great we are doing when we undertake a task that is dreadfully painful and will probably cause later repercussions. Having the courage to do small amounts of work that healthy folks take for-granted; experiencing pain and fatigue at unimaginable levels, and persisting anyway, time and time again. Everyday with chronic illness is someone else’s nightmare, and still spoonies find a way to cope. That is bravery. When one of those magical, unscripted moments where we take our illness by the throat and tell it who’s boss finally does happen, we don’t want to be afraid that pushing ourselves will lead to someone using  “well, you did it yesterday!” against us later. Just because we did something one day does not mean we are at all better. It could have even set us back a week or two, no matter how small the action.

————

For instance, I drove my boyfriend to the hospital last month for severe hip and back pain. It was horrible. First time I had driven in over a year. I sat in the hospital sobbing like I was the patient that needed assistance. When we got to the ER, they immediately took my boyfriend and I back to a room, he talked to a doctor for a second, and then they gave him IV valium and dilaudid without so much as making him feel like a drug seeker, not one time. My boyfriend’s doctors kept coming in with boxes of tissues for me and judgmental faces, like I didn’t have a right to be in so much pain. I pushed myself way farther than normal taking him to the ER that day, and I was hurting, but pain alone doesn’t usually make me cry in public.  Truthfully, I was also crying about the fact that I will never be treated that well in a hospital, I will always be treated like an addict when I am in the most need. I have been turned away from ER’s and Urgent Care many times because “they don’t manage chronic conditions, that’s what your primary care is for.” OMFG, REALLY?!

—————-

Just like with me driving my boyfriend to the hospital, doing something once does not mean I can do it again tomorrow. The next day I was almost unable to get out of bed, and by “almost unable” I mean it took two hours and a handful of pills and I’d rather not talk about it. Pushing through the pain is not always the best choice for those of us with chronic pain, it can and will cause flare ups that are disproportionate to the thing that set them off. One less painful day or one easier week does not mean I am cured (but they are really, really, really nice!). Going outside will not cure my illnesses. Trying harder isn’t really an option since every single day I am trying with all my ability to not let this illness get the best of me. I am not a mooch, I am not lazy, I do not enjoy depending on others for help. I did not ask to be in this much pain or to burden the love of my life with my conditions. All I can do is keep putting one foot in front of the other, like so many others dealing with chronic illness and chronic pain. We are tough because we have to be. It’s not an optional character trait.

When I have these conditions in remission enough to drive, I will get us in the car and head straight for the coast or the mountains. I know my boyfriend wants me to be able to drive again. I do too, so much! But wanting is not the same thing as being able to make it happen. It’s beyond frustrating… it’s a kind of frustration and desperation that try to drag me deep down into depression. I want to be able to assume these responsibilities again, I really do, because emotionally it felt great to drive him somewhere when he needed me, but the way my body reacted to all the movement, walking, sitting, twisting, was enough to convince me that my driving days are on hold again for now.

Despite the pain and restrictions of having several chronic pain conditions, my favorite phrase is still “I can do it” even when I really can’t. It might have taken me an hour to get that glass of water, but damn it, I did it myself. I try to push my limitations as often as I get a chance, in order to feel human.

Healthy or chronically ill or somewhere in between, we all push our boundaries to feel alive. It’s the difference between existing and really living. I’m going to keep pushing myself as so many other spoonies do on a daily basis, and if that allows me to get back to driving eventually, even better! I’m tired of hearing what I “should” be doing… instead I’m just going to do what I can and be happy about it, every day. To everyone else out there struggling with what others think you should be able to do, it gets easier to stand up for yourself every time! No guilt, we didn’t ask to be sick!

Advertisements

Tags: , , , , , , , , ,

About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

2 responses to “Stream of Conscience: The Chronically Ill Are Tougher Than Nails”

  1. abodyofhope says :

    Thank you for being both an encouragement and also spreading awareness. This is an awesome post for Spoonies and non-spoonies 🙂

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Undiagnosed Warrior

Be brave, little fighter. There's a warrior within you.

moderndaywarriorprincess

Because All Women are Princesses & are Stronger Than We Ever Knew

Quinn's Cauldron

The Traditional English Witch, Rowan Quinn

Hypermobility Syndrome India

information and narrative

Lyme & Co

A therapist's journey through Lyme Disease

iamchronic

Writing Through The Tragedy And Terrible Beauty Of A Life In Chronic Pain

No More Silence. Speak Out Against Domestic Violence.

Silence Enables Violence. Find Your Voice.

Hannah's Battle to Breathe

Living with a chronic illness: the ins and outs

%d bloggers like this: