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  • Within These Four Walls by Mindfully Evie

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Most Recent Posts

  • The Stories Behind What You Can’t See
    May 4, 2021
  • Lyme Disease Awareness Month
    May 3, 2021
  • M.E Awareness
    May 3, 2021
  • Missing Millions
    May 1, 2021

mindfullyevie
What I wish people knew about chronic illness… 1 What I wish people knew about chronic illness… 1. You will only ever see me when I’m physically at my best. 2. It’s okay to call me disabled. Disabled is not a bad word. 3. I still want to be invited even if you know I can’t make it. 4. It means a lot to me when you research my illness. 💻 5. Just because I’m doing better doesn’t mean I am better. 6. Remember ‘lockdown’ is a permanent reality for so many of us. 🏡 7. Just because I could do something yesterday doesn’t mean I can today. 8. Please don’t leave me out of a conversation because you’re unsure what to say: not saying anything hurts more. 9. Living with a chronic illness is a full-time job. There’s so much behind-the-scenes work that you don’t see. Anything you would add on what you wish people knew about chronic illness? 😘 xx #chronicillnessawareness
This week is M.E awareness week and the start of # This week is M.E awareness week and the start of #millionsmissing. I always find this week bittersweet. It’s good, because thousands of people across all corners of the world come together in solidarity to raise awareness and bring a voice to an illness that has been silenced for far too long. It’s makes me so emotional to see all the support and stories of others. But it’s sad, because it reminds me how millions of people across the globe are struggling, often with little or no help. I think one of the worst things about M.E is that people don’t often realise the scale of just how many people have it because we always suffer behind closed doors. Our illness requires us to retreat; into the silence and away from society. So it means we can literally disappear from the world, and unless you have access to social media, you can be left completely isolated. We’re not the people you see at hospital, receiving treatment. We’re not the people you see on the streets, telling you about our illness. We’re the people whose illness means we often literally drop out of society, sometimes suddenly, sometimes gradually. We’re the people who are forced to leave school or work, never to return, and often with no explanation to others why as we don’t even have a name yet for our unexplained symptoms. But I hope this week you can see us. I hope this week you take the time to look at the #millionsmissing and honour our presence. I hope this week you think of the people living with M.E behind closed doors. We are the millions missing. ❤️❤️❤️ #MEawareness #canyouseeMEnow
Welcome to what life with no cure or one route tre Welcome to what life with no cure or one route treatment can look like. Most of us with chronic illness have to become our own doctor, and this photo is the absolute smallest insight into the medical side of what this can involve (I have chronic Lyme which involves taking a LOT of things). But what you can’t see in this photo: - The endless hours/days/weeks of research 💻 - The phone calls to the doctors, the tears of frustration when they can’t help - The blood tests, the follow ups, the confusion when everything seems to come back *okay* - The fact it can takes years to get a diagnosis (you can’t even get tested properly for Lyme in the UK) - The ridiculous amount of money spent on supplements/herbs/medications/tests/consultations - Home test kits for all the vital things the local doctors won’t test, followed by monitoring your own levels, adjusting medications when they don’t come back okay even though you have no idea what you’re doing as you’re 100% on your own 👩🏽‍🔬 - The unrelenting 24/7 symptoms: fatigue, migraine, pain, sensitivity to light + noise (these vary from person to person as no two people have the same symptoms - confusing? Welcome to our world!) - All the science books, research papers, and forums read - The folders, spreadsheets, and documents to keep track of symptoms and medication changes 💉 - The heartbreak and frustration when yet another treatment doesn’t work - The incredibly complex timetable of what to take when, making sure that all the 50 different supplements/herbs/meds you’re taking don’t counteract with each other, trying to fit in all their individual requirements (take in morning, on empty stomach) 🗓 - The dietary regimes, the effort required to get to sleep each night, the rest, pacing, meditation, healing practises, visualisations - The balance of trying not to always think about your illness and find a life outside of it even though you live with it 24/7 - The sadness that comes with realising that living with a chronic illness is a full-time job 🦠 • If reading this feels overwhelming, then you may be feeling a teensy amount of what we all feel! This is our world and it never stops 💚 xx #chronicillnessawarenes
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? #invisibleillnessawareness
What not to say to someone who is struggling... 1. What not to say to someone who is struggling... 1. “It could be worse!” *it could also be a lot better* 2. “At least it’s not cancer” *my experiences are still valid* 🌈 3. “You just need to try yoga/meditation” *I don’t need you to fixed me* 4. “Just think positively!” *this is unrealistic and unhealthy* 🙅🏽‍♀️ 5. “You are in charge of your emotions.” *then no one would be sad* 6. “I don’t know how you get through it all” *I don’t have a choice* 🧡 7. “Just focus on the good things in life” *i can’t heal from my pain if i ignore it* 8. “My someone who had that, they just did…” *please don’t give unsolicited advice* 9. “Everything happens for a reason. *this isn’t a universal belief* Anything anyone has said to you that you’d add to the list? xx
Feeling sad for no reason is still a valid reason. Feeling sad for no reason is still a valid reason. ❤️ Sometimes you have those moments where you can’t explain it, or give a particular reason as to why, but you just don’t feel good, and I’m here reminding you that’s okay xx
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