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mindfullyevie

I want to add that this isn’t a “feel sorry fo

I want to add that this isn’t a “feel sorry for me post” or “the top ten things I hate about chronic illness”. Instead, it’s just awareness for people to realise that chronic illness can dictate your life in the biggest and smallest ways possible. From not being able to work to having to pause an activity to go rest. And over time, those little freedoms that get taken away can be as heavy to carry as the big ones.

These kinds of thread posts I do are also to always remind those with chronic illness and/or disability that I see you; I see your effort to live your life while living with limitations. I see you getting through each day. I see you showing up to this moment. And I think that’s such a brave thing to do. You are not alone 🌻

The every day freedoms you lose when you have chronic illness…
1. Being able to get through the day without needing to stop and rest. 🛌
2. Not having to prioritise activities based on energy levels.
3. Being able to make set future plans.
4. Not needing to balance the joy of doing something while working out how sick it will make you. ⚖️
5. Being spontaneous and last minute.
6. Having different options and choices about where you go and what you do.
7. Being able to work full-time and socialise.
8. The ability to go anywhere at anytime. 🌏
9. Not needing to compromise on certain areas of your life to enable you to do something else.

Love, E xx

I wish you could see how hard I have to try to not

I wish you could see how hard I have to try to not compare myself to my peers 🌛✨

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

Another year come and gone. No further from being

Another year come and gone.
No further from being free from this
than I was three years ago.
Dreams of blue skies,
open roads,
and life outside this house
slip further away still.
I don’t know what I’m doing wrong.
I don’t know what I’m doing right.
In the darkest hours,
the questions of
‘Is this all in your head?’
slip up from old surfaces
that people, doctors,
and history have left behind,
making me feel that maybe
these three years are self-inflicted
and this confinement
is somehow my choice.
These thoughts are ever so fleeting
but oh so devastating.
This is what being ill with an illness
so misunderstood can do to you:
it can take the physical facts of your reality
and twist them again and again
until even you start to question
if it’s all in your head.
But it’s not. I know it’s not.
It could not be more real or evident;
I feel the weight of the fatigue in my bones,
in every breath I take,
pulling me downwards
like it has a gravitational hold on me.
And so I submerge the thought
that I have subconsciously
inflicted this pain
upon myself,
drowning out the idea that this is my fault,
and pull out the evidence that:
this is not my fault,
I didn’t cause it,
there is nothing I am doing that
is causing me to stay in this place. ~ Page 30 of my book, ‘Everything is Always Changing.’ Available via my shop (mindfullyevie.com) and Amazon worldwide 📚🌍💛 xx

I hope you’re proud of all the times you rested

I hope you’re proud of all the times you rested even though you didn’t want to.
I hope you’re proud of all the times you said no.
I hope you’re proud of all the times you did what was right for you.
I hope you’re proud of all the times you stopped instead of pushing through.
I hope you’re proud of all the times you put yourself first.
I hope you’re proud of all the times you recognised your limits.
I hope you’re proud of all the times you honoured your limits.
I hope you’re proud of all the times you went at your own pace.
I hope you’re proud of all the times you realised your best is, and always will be, enough.
~
Page 220 of my book, ‘Everything is Always Changing.’ Available via my shop and Amazon worldwide 📚🌍💛 xx

Anyone else worry they talk about their illness to

Anyone else worry they talk about their illness too much? 🙋🏽‍♀️
I do, especially online.
It’s weird because when I was bedbound, I didn’t actually talk about it that much.
But since my improvement, I’ve felt more compelled to speak up about my illness. 📣
I guess it’s a mixture of feeling like I need to remind people that just because I’m no longer bedbound doesn’t mean I’m still not sick.
Or that it’s no longer a big part of my life.
As well as a responsibility to talk about the impact of chronic illness for all those who are too ill to do so.
It feels good to raise more awareness around it and be vulnerable in the thoughts chronic illness can present in your life.
But there’s no doubt, I still worry a lot I talk about it too much 💬
Yet, the reality is, illness is a part of our life 24/7.
So the amount we talk about it is an absolute smidgen to the thoughts and impact it actually has on us. 💛
(I also don’t think talking about illness takes away the fact that someone’s illness is the least interesting fact about them. There’s soooo much more to someone than that.)
~
My illness impacts everything I do. So it can be hard not to talk about it when it’s so present in my life 💭

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