thechronicills thechronicills

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DANIELLE 🦓🎗🥄💊  🔬The chronicles of a Genetic Trainwreck™ on a global medical odyssey to reclaim life from #chronicillness 🔦 Illuminating #invisibleillness 🍃My story:

LITTLE GAINS, A LOT OF PAIN... This is the look (and attitude) I shot my personal trainer’s way (with my sweaty, puffy, pouty face) at today’s session.
I’ve had a few setbacks with neuropathic pain in recent weeks which has landed me balls deep in struggle town.
Again.
Though it’s a place I’m familiar with it has been frustrating AF, so, like any grown up person, I made that known in a mature fashion.
Lulz.
Nope.
It was more a ‘throw my toys’ & stamp my feet kind of way... because “my buns, they don’t feel nothin’ like steel, Cher.”
Physical rehabilitation can feel like two steps forwards & three steps back & it’s hard to keep your chin up. I manage to catch a glimpse of my life returning to some kind of normalcy, like a mirage in the middle of the chronic illness desert, only to then feel as though I’ve stepped in chronic pain quicksand.
Swallowed whole.
And so, my ever patient trainer let me have my little petulant child moment then gently reminded me that I have come a long way. That every stage of recovery & rehabilitation will present a new challenge.
So, in fact, my setbacks are just signs that I’m breaking new ground with my progress. As frustratingly slow as it is, my measured-in-millimeters progress, is still far better than where I used to be.
He urged me to pull myself up by the bootstraps, push through the pain & just keep going.
It’s never easy.
And, to be fair, we have been training together for 5 years & this is one of a few times I’ve cracked it & briefly felt like giving up following a set back. Or rather, one of a few times I’ve actually shown it (I’m usually a poker face when it comes to physical pain).
Though my buns may not be like steel, my mind has to be. Each & every session hurts... a lot.
Not only in the “normal” way (tired, sore & burning muscles) but also in the EDS way (joint pain & neuropathy). But you’ve got to keep on moving forward, even when it gets hard & painful.
And one day, when you look up, your trainer will point out those sweet, sweet micro gainz... and you officially become a douchey gym-bro who says things like #gainz.
(Ugh as if, no one should ever say that word: ever).
💪💪💪💪💪💪💪💪💪💪💪

REPEAT AFTER ME... You are not unreliable, your health is. If you are too unwell to keep up with friends, family or work mates on any given day, week or month: it is NOT your fault.
People will try to induce guilt or shame from you/in you.
Don’t let them.
Certainly don’t allow it to be the reason you push yourself too far beyond your limits, to the detriment of your physical and/or mental wellbeing...
I say “too far beyond” because, let’s be honest, it’s not realistic to stay totally within your limits ALL the time.
That said, do your best to pace yourself & rest when you need to rest. If others don’t like it, honestly... fuck ‘em.
Do not take any shit from any person who tries to make you feel like a burden for having a chronic illness.
I did for the longest time & it always rendered me worse for wear.
If someone finds it too taxing to conjure some empathy towards your ‘inconvenient’ health issues... then ask them to stretch their imagination & picture just how difficult it would be to actually BE YOU... day in, day out.
Yep. Thought so.
Your precarious health is not a burden. You are not being difficult. You are not giving everyone a hard time... you are HAVING a hard time.
Okay?
Okay... now go back, read this caption again & again until you memorize it.
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💜🙌💜🙌💜🙌💜🙌💜🙌💜🙌💜🙌💜🙌
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#lupus #lupuswarrior #lupuslife #lupussucks
#interstitialcystitis
#type1diabetes #type1diabetic #diabetes
#multiplesclerosis
#ulcerativecolitis
#rheumatoidarthritis
#autoimmune #autoimmunedisease
#lymedisease
#endometriosis #endowarrior
#crohns #crohnsdisease
#hashimotos #hashimotosdisease
#colitis #arthritis
#pcos #pcosfighter
#epilepsy #epilepsyawareness
#fibromyalgia #fibrowarrior

SNUG AS A BUG... I’m not going to lie, I’ve enjoyed the cold & rainy weather we’ve been hit with lately here in Perth. It’s given me time to disconnect from social media, read a LOT & most importantly: think & decide what my next move will be.
I’m also enjoying it because I know that in 4-6 weeks time I will be back in the blazing heat that is summer-time in Los Angeles.
More on that later... for now, let’s hear it for polka dot flannelette pajamas.
OMG FASHUN.
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❄️🌧❄️🌧❄️🌧❄️🌧❄️🌧❄️🌧❄️🌧❄️🌧
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#ChronicPain #Dysautonomia #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #SpoonieLife #POTS #SpoonieStrong #SpoonieProblems #SpoonieSupport #SpreadAwareness #Fibromyalgia #FibroWarrior #InvisibleIllness #EhlersDanlosSyndrome #EDS #Disabled #InvisibleDisability #EhlersDanlos #CFS #ChronicFatigue #InvisibleIllnessFighter #RareDisease #RareIllness #RareDiseases #InvisibleDisease #ChronicallyFabulous #ChronicallyAwesome #PainWarrior

MONDAY MANTRA... “Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret.”
- The Four Agreements by Don Miguel Ruiz
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Simple in theory, right?
But oh so much more difficult in practice... especially when you have a chronic illness.
Personally, I used to (ok, still do) have a terrible habit of comparing myself to others & even my past self.
I berate myself for not being able to do things “as well” or “as much” or “as frequently”... as I could when I was ‘well’.
Then I remind myself that it’s not fair to compare 100% Danielle’s ‘best’ to Chronically Ill Danielle’s ‘best’... because it’s like comparing apples with oranges.
So everyday I make the agreement with myself that I will always do my best AND (this is the important part) that my best is always ENOUGH.
It’s a daily choice I make & there are most definitely days when I slip into that old, familiar, self-loathing judgement spiral...
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I encourage you to try this shift in mindset on for size & see how it fits.
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Go on, give it your best. That’s all anyone can ever do.
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💙🧡💖💚💛💜 💙🧡💖💚💛💜 💙🧡💖💚
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📷: @stacieswift .
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#NervePain #Nerves #Neuralgia #Neural #Neuropathy #NeuropathicPain #TrigeminalNeuralgiaAwareness #TrigeminalNeuralgiaWarrior #Sciatica #SciaticNerve #SciaticNervePain #ImpingedNerve #MedicinalCannabis #MedicinalMarijuana #CannabisOil #CBD #CBDoil #Cannabidiol #Cannabinoids #HempOil #Hemp #EhlersDanlosSyndrome #ChronicPainWarrior #InvisibleIllness #EDS #Epilepsy #Epileptic #TrigeminalNeuralgia #ChronicPain #ChronicIllness

SELF-CARE-BEAR... When you're not feeling great, those little 'taking care of yourself rituals' are kind of the first thing to go out the window.
Because when you're dealing with a chronic illness, moisturizing can feel a bit like a bandaid for a bullet wound.
I know. I get it.
I'm was one of the first people to not moisturize, not brush my hair, hell... sometimes even showering was too much when I was really unwell in the not too distant past.
But when I made the effort, I may have felt exhausted (but let's be real: I kinda always felt that way back then), however I almost always felt much better... and then promptly wondered why I didn’t make the effort more often: as in daily.
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Oh yeah... it's because I always felt exhausted.
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Thank you @ivonnemacewen for this detoxy facey thingy, on this Self-Care Sunday my skin feels particularly fabulous. 😘
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#ChronicPain #Dysautonomia #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #SpoonieLife #POTS #SpoonieStrong #SpoonieProblems #SpoonieSupport #SpreadAwareness #Fibromyalgia #FibroWarrior #InvisibleIllness #EhlersDanlosSyndrome #EDS #Disabled #InvisibleDisability #EhlersDanlos #CFS #ChronicFatigue #InvisibleIllnessFighter #RareDisease #RareIllness #RareDiseases #InvisibleDisease #ChronicallyFabulous #ChronicallyAwesome #PainWarrior

SWITCH OFF TO SWITCH ON... I’ve been posting on Instagram far less because I’ve been taking extended breaks from my phone & laptop recently. At first they were enforced, because: addict... but now I actually crave them.
Weird, right?
Let me begin by saying that I know having a chronic illness can be goddam boring, trust me, I get it. When you’re in pain or unwell there’s not much that you actually CAN do & smart phones/the interwebs provide endless hours of entertainment & distraction.
Sometimes too much.
Recently I’ve revisited books about neuroplasticity by Norman Doidge & discovered a great little self-help book, by journalist Catherine Price, called “How to break up with your phone” (google it if you’re interested, she wrote a quick run down with some tips for The NY Times). @howtobreakupwithyourphone
All of which have helped me realize that sometimes we need to get some distance from technology for the sake of our brains & mental health.
As the old saying goes... “too much of a good thing...”, uh, something, something, I got distracted by a Facebook notification & didn’t read the rest.
In her book, Price details how “... phones and apps are designed to be addictive... the time we spend on them damages our abilities to focus, think deeply, and form new memories.”
I’m not saying phones are bad, they are brilliant. Especially for those of us in the chronic illness community. We have the chance to still feel connected to our friends & the outside world despite our physical limitations. But so far, in the time it’s taken me to write this post, I’ve been distracted by & have switched between Facebook, Facebook Messenger, Messages, Instagram & Chrome web browser.
The same technology that keeps us connected can also create a deep disconnect in our lives. Social media in itself can be a sharp double edged sword... the effects of which probably require their own dedicated post!
How many times have you picked up your phone to scroll through Instagram and *poof* two hours have gone by unaccounted for? 🙋‍♀️🙋‍♂️
All. The. Time.
When I force myself to unplug, I’m far more productive with...
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GRATUITOUS PUPPY POST... Um, just quietly, how cute is this little fluff nugget? I found this photo of baby Ruby on my phone today so #TBT, yo.
This was the day we took her to the vet for a follow up appointment after she somehow squeezed behind a friend’s TV stand & munched on some rat poison... all within 1/16 of a milisecond (actual measurement of time).
Fun times.
My gosh she was gosh-darn cute but I don’t particularly miss the puppy days!
Actually... look at dat face, awwww, I can’t stay mad at you.
I want another puppy you guys!
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👑🐶👑🐶👑🐶👑🐶👑🐶👑🐶👑🐶👑🐶
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#goldenretrievers #ilovemydog #dogstagram #dog #dogs #dogsofinstagram #dogfamily #dogoftheday #instadog #cutedog #ilovedogs #instagramdogs #instadogs #family #puppy #instapuppy #cutepuppy #puppyoftheday #ig_dog #dogmom #dogsofinsta #dog_features #insta_dog #goldenretriever #goldenretrieversofinstagram #goldenretrieverpuppy #goldenretrievers #goldenretrieverworld #goldenretrieverlove #goldenretrieverlovers

“PLEASURE AND PAIN... The medical cannabis debate. Why would any sane Australian go to the US for medical treatment?”
I feel honoured to be a part of the cover story for the 1st anniversary edition of the brilliant publication: Neighbourhood @neighbourhoodpaper... Sydney’s independent monthly newspaper.
Thank you to @jonathansamway, Neighbourhood’s fearless publisher & editor-in-chief, a man I was lucky enough to cross paths with during my career as an art director in the advertising industry. I am endlessly grateful to you for reaching out to me & giving a compassionate voice to my journey with chronic pain & medical cannabis.
A big thank you must also go to Neighbourhood’s New York correspondent, @iankeldoulis, for crafting such an eloquent piece of writing about a complex topic. I threw a LOT of information his way during our interview & believe he has produced an excellent piece of journalism.
And finally thank you to Neal Ashby for the amazing cover artwork, I so appreciated my feedback being taken on board & think he’s created something extremely eye catching & compelling.
To have a read of the article click on the link in my bio, or visit:
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https://neighbourhoodpaper.com/issues/
pleasure-and-pain-the-medical-cannabis-debate/
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And (shameless plug time) if you happen to enjoy consistently interesting articles from independent publishers why not subscribe to Neighbourhood’s mailing list? Their ethos is “unity in diversity” & it’s really not hard to see why. On their website you’ll find filmed content, podcasts, animation & rad playlists, as well as a series of postcard stories that stretch from Mexico to Broken Hill. It's a big world. And Neighbourhood is in it.
This amaze publication manages to cut across age groups & economic demographics & enhances a feeling of community & dialogue between people, via a diverse range of voices. So subscribe & enjoy!

PROFESSIONAL PATIENT... Managing a chronic illness can be like a full time job in itself. Sometimes it can feel like almost your entire life is spent waiting in various doctors’ offices... and that shit can get real depressing, real quick.
I spend SO much of my time either traveling to/from appointments; waiting for appointments; making appointments; or worrying about upcoming appointments (because they usually involve physical exams that cause me the ouchies, you guys).
You get the drift: it’s full on, full time.
Added to this, because my condition (Ehlers Danlos Syndrome) is systemic & affects so many different parts of my body, I have to see various different specialists... specialists where I’m usually the youngest person in the waiting room by at least 30-40 years (I’m looking in your direction cardiology/rheumatology!). It gets old, real quick (pun intended, can’t help it).
Disclaimer: Not that’s there’s anything wrong with aging! Far from it. We should all be so lucky to live to a ripe old age. Personally, I plan on having a rad rocking chair on a porch, my teeth in a glass jar next to my bed, spending my days regaling the young folk of the dark, dark times before there was an internet & reminiscing about the stupid shenanigans I got up to when I was but a young filly.
But I digress...
Being the youngest person in a waiting room by a looooong shot tends to summon constant uninvited observations such as my personal favourite:
“You’re far too young to be here/sick”.
Deep breathes.
Exhale.
Try not to roll your eyes into a parallel universe.
Smile.
Ok, you good?
Good.
Where was I? Oh yeah... so I had a think about some of the ways I pass the time & hold on to what’s left of my sanity while managing my chronic illness & its ensuing plethora of appointments.
Please feel free to add any tips/tricks that work for you in the comments below!
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• PODCASTS: Oh eM Gee, where would I even BE without my podcasts? Whenever I’m driving to/from the doctor’s office they successfully distract me from the traffic or any anxiety I’m feeling about my impending appointment.
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CONTINUED IN COMMENTS BELOW 👇

COFFEE... When it’s Monday & your brain is giving you the silent treatment: grab it by the coffee beans. I honestly don’t know what I’d do without my daily Cup O’ Joe... quite possibly 25 to life, kidding! No, but really. 😳
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🧡☕️🧠🧡☕️🧠🧡☕️🧠🧡☕️🧠🧡☕️🧠
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📷: Pinterest (artist unknown)
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#thyroiddisease
#ankylosingspondylitis #osteoarthritis
#EhlersDanlosSyndrome #ButYouDontLookSick #ChronicPain #EDS #diabetes #fatigue #multiplesclerosis #ulcerativecolitis#arthritis #rheumatoidarthritis #chronicpain #lyme #lymedisease #ibs #ibd #lupus #autoimmunedisease #endometriosis #ptsd #pcos #migraines #crohns #depression #anxiety #invisibledisease #invisibleillness

MOTHER’S DAY BRUNCH... Mimosas? Essential. This is my mum Gayle, she is a wonderful, warm, funny, generous, mad, magic, loving, sarcastic, sassy & selfless lady.
She cared for me my entire life not knowing that I had a rare connective tissue disease. Never knowing what was wrong, why I was always sick, injured & in pain... & seemingly not getting better.
Mum always researched as much as she could & was the fiercest advocate for my health nonetheless.
She went all "Lorenzo's Oil" on me, on more than a few occasions. One that springs to mind was her tirelessly researching how to manage severe asthma in the library (ahem, this was pre-interwebs & Google, kids)... then promptly enrolling me in swimming lessons (because anaerobic exercise was good for my lungs, she was right). Another time mum LITERALLY saved my life the day that she ignored medical advice to “just take me home to rest & wait for the blood test results in 3 days". Little did we know at the time, I was going into full blown anaphylactic shock (now attributed to MCAS) & drove me straight to the hospital; encouraging me to stay awake as my throat swelled & closed over.
I often feel awful for everything my illness & injuries have put her through over the past 36 years. If I ever verbalize that to her she jokes, in her trademark dry, sarcastic way: "If you were a dog we would have put you down by now, Danielle".
Handling adversity with humour is most definitely something that I got from my mumma. In fact, my file at the children's hospital was so thick she would joke that child services would come after her one day!
My mum has nursed me through more surgeries & procedures than I can count & in the last 4+ years, in particular, has been my biggest source of support.
No, my family isn't perfect, FAR from it. Whose even is?! Though we may argue from time to time, we all know each other REALLY well & love each other because of (& sometimes in spite of) that fact... as opposed to a less insane but polite, surface level family connection friends often describe with their own relatives.
I am so grateful for the love & support of my mum, it means the world to me & I love her BIG heaps (actual measurement).

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