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  • Everything is Always Changing

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mindfullyevie

mindfullyevie
You say I’m invisible but can’t you see how mu You say I’m invisible but can’t you see how much my life has changed: no more school, no more work, no more socialising. You say I’m invisible but can’t you see how it affects my family: full-time carer, cancelled holidays, the worry in their eyes. You say I’m invisible but can’t you see the pain I’m in:
the leaving early,
the cancelled last-minute,
the you haven’t heard from me ‘cas I did a thing yesterday’.

You say I’m invisible;
that you can’t see me.

Come,
look closer.
You’ll see me.
You’ll see the pain.
You’ll see the life changed.
You’ll see the effort to look normal.
You’ll see the loneliness, grief, sadness and frustration.
You’ll see the ripple effect my illness has had on my life and those I love.

You’ll also see a fighter.
You’ll see someone trying so hard to get better.
You’ll see the daily acceptance, surrendering, and letting go.
You’ll see the extra love I’m pouring into my body and soul, reminding myself it’s going to be okay.
You’ll see the unrelenting resilience, courage and bravo it takes for me to get through each day.

Come and look around me too:
you’ll see all the other
warriors,
healers,
and just-trying-to-get-by-ers,
like me out there.

Why can’t you see me.
Why can’t you see me.
Why can’t you see me.

Do you see me now?
 ~
Page 51 of my book, ‘Everything is Always Changing.’ Available via my shop and Amazon worldwide - 50% off kindle edition in May and use code AWARENESS20 for 20% off the paperbacks via my shop mindfullyevie.com 📚🌍💛 xx
Things I don’t talk about enough with chronic il Things I don’t talk about enough with chronic illness… 1. How much it hurts when you tell me I look well. 2. How hard I have to try to not compare myself to my peers 👯‍♀️ 3. How nervous I get posting only the “good” things. 4. How much effort and discipline it takes to rest every day. 5. How heartbreaking it is to realise how long I’ve been sick 💔 6. How hard the question, “what do you do for a living?” is. 7. How much planning, preparation and recovery I do just to leave the house or do a thing. 8. How insecure I feel always *banging on* about my illness 💭 9. How much I want you to see and acknowledge just how hard I’m trying. Anything you would add to the list? ✨ xx
Please remember that my fatigue is not the same th Please remember that my fatigue is not the same thing as your tiredness. 💙
The things you don’t see behind chronic illness. The things you don’t see behind chronic illness... 1. The guilt of cancelling last minute. 2. The enforced rest periods. 3. The scramble for an answer when a stranger asks, “What do you do for a living?” 4. The stares you have to endure when you use visible disability aids or blue badge parking spots. ♿️ 5. The fight for basic health care. 6. The excessive planning and pain meds organising just to do a thing. 7. The grey area between sick and not sick enough. 🌫 8. The anxiety of not being able to plan your future due to the unpredictability of your health. 9. The fear that this is forever. Anything you would add on the things you don’t see behind chronic illness? ❤️ xx
Chronic illness is not enjoying time off work. It’s being heartbroken that you can’t work. 📖 (A big shoutout to everyone who has no choice but to work, and it takes everything from you. Or those who can only work part-time and wish they could do more. Or those doing a slower job, unable to pursue their dream job. ❤️)
What I wish people knew about chronic illness… 1 What I wish people knew about chronic illness… 1. My physical appearance has nothing to do with how well/sick I am. 💛 2. It’s okay to ask me about my illness. 3. You will only ever see me when I’m physically at my best. 4. Just because I could do something yesterday doesn’t mean I can today. 5. I still want to be invited even if you know I can’t make it. 6. It means a lot to me when you research my illness. 💻 7. Just because I’m doing better doesn’t mean I am better. 8. My symptoms, and the intensity of them, varies both daily and over time. 9. Making future plans is so hard as I have no idea how I’ll physically feel on the day. Anything you would add on what you wish people knew about chronic illness? 😘 xx
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