Chronically Extraordinary

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Chronically Extraordinary

💛You’re chronically ill ADHD mum! 💜 Living with Endometriosis, Fibromyalgia, CFS, HSD and ???

15/09/2023

📣 Chronic Illnesses are dynamic disabilities! 📣 Say what now?? 🧐 let me explain…
When someone loses a limb, say their leg for example, they will never be able to walk without a mobility aid or prosthesis ever again. No matter what happens, this will always be the case and will never change - that is an example of a STATIC disability. But chronic illness works differently, it’s not static, it’s dynamic. A dynamic disability is one that isn’t always the same, it changes day to day, week to week, because the symptoms of it are impacted by SO many different factors - such as how much sleep we’re getting, the amount of stress we’re under, the season, the weather, our medications, our emotions, changes in routine, external demands, and the list goes on!! So that’s why one day we might be bed bound, have zero energy, in a world of pain, and unable to do anything beyond the basic self care tasks, but then a couple of days later we might be able to go to work, exercise, or attend a social event - although it will still be a struggle - just a manageable struggle. This is because some days our capacity is higher than others, and Just because you might see us looking “well” and doing things one day, doesn’t mean we’re cured! And it certainly doesn’t mean we’re not struggling - we are! ALL. THE. TIME. It also doesn’t mean that tomorrow we’re going to be feeling and looking the same and able to do the same things all over again - in fact in all likelihood we won’t! 🫣 Having a dynamic disability means that we’re not only disabled on our bad days and we’re not suddenly able bodied on our better days. It means we live in a state of varied capacity, with sets of symptoms that are in constant flux. Every single day we wake up and have to assess what our capacity is for that day - how much energy we have, how much pain we are going to need to manage, what other symptoms we have to deal with and how intense those are. Being chronically ill is complex, it’s exhausting, and it’s crucial for our loved ones to understand that we are ALWAYS doing are best within the capacity we have on any given day. 💜
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25/05/2023

“Mum…wat iz happen?” 🤨 Packing my hospital bag for admission tommorow - for another ketamine infusion, my last one being right before COVID hit. It’ll be the first time I’ve been away from little miss Tinsel for more than a night and I’m not sure how she’s going to go without me! Calling her a “Velcro dog” would be an understatement! 🫣
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23/03/2023

So I did a thing…Just in time for the last week of Endometriosis Awareness month! This is my original artwork, that was inspired by my own struggle with Endo for the past 20 years, it represents pain, vulnerability, but also strength. $5 from each shirt sold will be donated to who do amazing work here in Australia to raise awareness and advocate for this severely underfunded and underrepresented disease. I hope you guys like this design, it comes in both standard fit and cropped fit and is manufactured from premium heavy weight cotton, which feels lovely and soft to wear. The Etsy shop link is in my bio. Xx
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09/11/2020

Nearly 1 year post excision (third time) and hysterectomy and I can feel my Endo growing back. The gaps between my flare times are gradually closing and at the times when I would have had my period all my symptoms are now back in force...just minus the bleeding. This is Endometriosis. There is no cure.
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24/10/2020

Just for fun - If endometriosis was a destination how would you review it??
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23/10/2020

To all my Endo sisters, our scars may be small but our fight is big. ✊🏼💛
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18/10/2020

It’s simple really, the central nervous is the foundation which supports our neurological (brain) functioning. When that foundation is depleted and overworked from constantly being bombarded with pain signals and stress hormones, which occurs with chronic pain, then the brain cannot function at it’s optimal level. This means that the brain has to use most of its capacity to execute the functions at the lower levels of the pyramid, like processing sensory input and moving the body in coordination. Since the brain is working with lowered capacity from a depleted nervous system the higher level functions at the top of the pyramid become difficult to execute - which include daily living activities, and academic learning. So THIS is one of the reasons why people with chronic pain STRUGGLE to do routine daily tasks, the things that healthy people take for granted. Our brains literally do not have the capacity to support all these functions at the normal level. Add to that the constant fatigue we experience and any other symptoms that come with our illnesses...aaaaaand now I finally understand why just having a shower and vacuuming the house can wipe me out for the rest of the day. This was a real moment of clarity for me recently, and I hope sharing it gives you clarity and compassion for yourself and those around you.
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13/10/2020

Chronic pain is something that never goes away. It may go up and down in intensity, but it’s always there to some degree no matter what.
One major problem with this constant pain is that it doesn’t care what else might be going on in our lives, we might be facing huge challenges in our personal or work life (Hello Covid-19!), and chronic pain will still be there! 🙄 In fact, pain it’s actually more likely to flare up in difficult times because pain LOVES stress, literally. The stress chemicals released in our bodies actually work to amplify chronic pain. I know right? WTF brain??! 🧠
This is why these days when we see a pain specialist they will want to know all about the potential stressors in our lives, because those will affect our pain levels as well as our ability to tolerate the pain we experience. This is why people recommend things like meditation, yoga, light cardio exercise, and mindfulness, because they are all proven ways to reduce the production of stress chemicals in our brains, which works to keep chronic pain from flaring up as much. Now, by no means am I saying that yoga can replace pain medication, trust me, IT CAN’T. I’ve been on various pain medications on and off for 17 years and I could not have got through college, uni, got jobs, got married, had a child, or started my own business without them. No way. But having found my amazing pain specialist 4 years ago, I now know that taking a walk most days, stretching, not overdoing it, taking time to relax and doing some yoga now and again are also really important parts of managing my pain day to day. I still get flares, because life keeps going and for me my hormones also affect my pain. But I don’t feel as completely controlled by it as I used to, and that’s something.
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Ferntree Gully, VIC
3156

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https://www.etsy.com/au/shop/TheChronicSquad

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