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  • Everything is Always Changing

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  • Your Worth is Unconditional
    May 27, 2021
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mindfullyevie

mindfullyevie
One virus was all it took to change my life. One v One virus was all it took to change my life. One virus was all it took to flip the path I thought I had planned and to shove me on a completely different, unknown path. One virus was all it took to see my health slowly slip out of my hands until barely visible grains were left. One virus is all it can take to snatch the word “me” from your vocabulary and slip a dot into the middle of the word to create M.E and consequently, change your world entirely 🌍. And it can, and does, happen to anyone.
School children, teenagers, students, adults, parents. A whole population of people silently selected to never recover from viruses so many will get. But what are you left with at the end of that? A population of people who can join together like no other. A population of people all connecting through a single thread. Our voices come together like droplets of water seeking each other out, and standing side by side, we form a tsunami of love and support. A community built like no other 👭. I know one day our collective voice will be heard and we will finally get the awareness, treatment, and cure so so desperately needed. And I know it won’t be the result of one single voice, but the result of an army of voices, standing together in unity, simply asking to be heard. 💙 ~
Page 184 of my book, ‘Within These Four Walls.’ 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
What chronic illness is not… (and what it actual What chronic illness is not… (and what it actually is)
1. Chronic illness is not enjoying time off work. Chronic illness is being heartbroken you can’t work. 💔
2. Chronic illness is not being unreliable. Chronic illness is having an illness that is unreliable.
3. Chronic illness is not feeling better after resting. Chronic illness is still being sick after resting.
4. Chronic illness is not being lucky to be home all day. Chronic illness is repeatedly missing out.
5. Chronic illness is not being happy = feeling good. Chronic illness is learning to be happy with the pain. 🌻
6. Chronic illness is not waiting to get better. Chronic illness is trying to get better every single day. 7. Chronic illness is not sitting at home watching TV. Chronic illness is being too ill and fatigued to watch TV. 
8. Chronic illness is not neglecting our bodies. Chronic illness is attending to ours bodies every need.
9. Chronic illness is not an excuse. Chronic illness is a valid reason. 

Anything you’d add to the list? 💭 xx
You say I’m invisible
but can’t you see
ho 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
I’m proud of you for getting through each day ev I’m proud of you for getting through each day even when you’re weighed down with grief. 🌅 I’m proud of you for trying to accept this situation you cannot change just so you can find some peace. I’m proud of you for enduring this storm even when it feels like you have no other choice. 🌊 I’m proud of you for showing up each day even when it’s so hard. I’m proud of you for letting people see you at your worst even though it’s uncomfortable. I’m proud of you for trying so hard to keep growing and going even when it feels too much. 🌱 I’m proud of you for saying no instead of yes, putting yourself first. I’m proud of you for saying yes instead of no, taking a chance. I’m proud of you for holding onto the light even when you’re surrounded by darkness. 🌟 I am so proud of you for reaching this moment and making it this far. I hope you’re proud of you too. Love, E 💛💛 xx
The grief that comes with chronic illness is real, The grief that comes with chronic illness is real, and it can be so heavy to carry 💛💛 Thinking of everyone who couldn’t join in with the festivities this Easter weekend, those who sacrificed all their energy just to join in, and all those who will have payback from the weekend. Love always, E xx
Ways to support someone with a chronic illness…
1. Don’t expect an immediate response - give us space and time to reply.
2. Be aware of our limitations: don’t overstay, find out what time is best for us and how much we can manage.
3. Research our illness(es) in your own time so we don’t have to be the one to always educate you.
4. Ask us how you can make an event more accessible (dim lighting, quiet room, wheelchair friendly etc.)
5. Be ready for us to cancel on you last minute - but please still always invite us. (and be understanding - we want to meet you, our body doesn’t!)
6. Don’t tiptoe around our illness - feel free to ask us about it directly (but also respect we don’t always want to talk about it)
7. Even though we’re sick, remember that we don’t always want to be seen as “the sick one”. ✨
8. Most of us are not able to hold jobs, so be ready to talk about other things - TV shows, books, pets, small joys, hobbies, the weather!
9. Keep showing up for us, you have no idea how much we value and appreciate your continuous support. 👯‍♀️

Anything you’d add to the list? xx
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