my mum, my nan & myself 🙌🏼 these two are my biggest supporters. my rocks. my nan makes up for the dad I never had. I'd be lost without them. we've been through some motherfucking TOUGH times together but through it all we have stuck together as one & I know, we'd all do anything for each other ❤️
so as you know from my last post I came home last tuesday & after only being home ONE full day my feeding tube broke 😭 it basically split for no reason & exploded all my feed & stomach contents out on me at 4am last thursday morning!!!! 😱 I couldn't believe it. after more than a year in HELL I finally came home, after 13 months, to my version of HEAVEN to have my feeding tube break not even TWO DAYS after being home. I was (and still fucking am), absolutely devastated beyond words, angry as FUCK and wayyy too many other emotions to list 😡
but after speaking to my main doctor (my gastroenterologist) we came up with a plan that I would come in to hospital (i.e HELL) on tuesday the 12th (tomorrow,) early morning, have the tube replaced late morning & go home in the afternoon. so that's the plan for tomorrow!!
I'm really really anxious that everything will go according to plan & just generally super anxious for the whole day. the main thing I'm super worried about is having to stay in. it just brings back so many awful, traumatic memories of when I was first admitted to hospital this time last year 😩 because when I was first admitted they said I would be in a week, 2 weeks max & it turned into 13 FUCKING MONTHS. I'm just terrified of something like this happening again! I'm sure everything will be fine & this time tomorrow it will all be over & I'll be at home 🏡 in my own room again but it's just a worry I can't help but have! thank you to everyone who has been there supporting me through this journey & a huge thank you to everyone who welcomed me home, it felt amazing to know that so many people truly care for me so thank you 🙏🏼💙 I'll update you on tomorrow as soon as I'm able to!!
Ok yesterday was a really rough day (more below) but one thing went right... I went 5 hours without my feeding tube beeping from having air in the line!! So I thought it would be funny to have feeding tube challenge to see who can have the record of longest time without beeps 😂 so post or comment below with your record!
Yesterday was quite honestly a day with with a lot of frustration and tears. I think the whole cancer thing finally hit me and it's just so frustrating to move so far backwards when you finally felt like you were moving in the right direction....but then my @freyliving shirt came in the mail and it was the perfect reminder that I've already done so much that I thought I couldn't I know I'll be able to get through this too 💪 (talk about this more on today's vlog-link in bio)
If I could give the girl I was 2 years ago some words of comfort. They would be... “You don’t know this now and you can’t even imagine this with all the pain and sadness you are in... But I promise it gets better. So much better! If you put in the work, and don’t give up, you will be living the life you have always dreamed about !
You will be free of the depression, the pain, the anxiety, the self hate for being sick, the days of crazy chronic fatigue you can’t get out of bed. Your tummy will feel so good and you won’t be dealing with terrible bloating and pain and suffering each and every day 🙏you will be FREE !!!
You will be helping others right where you are today, giving them hope, guidance , love and compassion they need to heal 💗You will be living your purpose you always knew was in there, but you couldn’t quite understand, because the blinders were on, and all you could understand was your suffering 🙏
I love you so much and I’m so sorry for all the mean things i have thought and said to you. I’m so sorry that I didn’t believe in you, and I thought you were letting me down. I just didn’t know what was happening and I was so scared. We are safe now, and soon you will be FREE 🌊please just hang on and DON’T GIVE UP .”
Now these words are for anyone reading this....
These words are meant for you . If I could help you right where you are now 💗you are going to be FREE !! I love you so much, you are going to heal and be able to live your life 🙏I am holding your hand, you can cry on my shoulder, I will hold you. You are safe 🙏your body loves you unconditionally and it was never attacking you. It has been fighting for you! And it needs your love and faith 🙏💗sending you so much love from my heart 😭I can’t stop the tears right now ... I believe in you and see you as whole and healed 💗💗💗💗
I wish I could tag you all 😘tag a friend who needs this message today 💗
So something a little magical has happened. I’m out of my auto immune flare, whoop
And on the other side, I’m actually stronger
I just went for a run. A RUN. Me. Running. Something unheard of for the last 8 years. Granted it wasn’t long. But I had the urge to do it and so just went. I haven’t been able to do any cardio for many years due to my mitochondria being fucked (technical term)
Those of you following my recovery will know I have used neuroplasticity and my meditation work as an integral part of recovery. Each workshop I have been to I’ve seen profound changes
This last few weeks I’ve been in a real meditative place, like my own 6 week workshop. I have spent a lot of time alone. Not over thinking. Not having a shit time. But learning more about how much my brain and central nervous system truly govern my immune system. Pulling threads together of years of research
Experimenting with my breath work, with my meditation, and monitoring my results with neurofeedback and heart rate variability measurements (yes, I’m a massive geek and need to get out more I know). This work with myself and bouncing off amazing professionals has lead to a huge progression in the programs we will be offering patients. We are all very excited
I know deep down I needed to have this experience. As we get closer to launching the site and all its associated self help patient programs and education, I had to go through this and emerge stronger. What right do I have to guide people through if I haven’t walked through my own fire and emerged
I’m a work in progress, and really human and imperfect, but I think that’s what makes a good teacher. I am no better and no worse than anyone else. I have passion, knowledge, and a will of steel to ensure chronic illness patients all get better. With a background in psychology, and personal experience as a patient, I am whole and ready for this just as I am. It took this flare to finally help me realise this.
When I say that yoga is for everybody, I really mean EVERYBODY! Even if you are bedbound, even if you require a wheelchair to get around, even if you can't get down onto the floor, you can still practice yoga. Even if you HATE doing yoga poses, you can still practice yoga. ⠀⠀
This is because asanas (the physical yoga poses) are just one tool that we can use to connect with ourselves. Practicing asana alone does not necessarily make you a yogi. Likewise, not practicing asana doesn't mean you aren't a yogi. It goes so much deeper than that! ⠀⠀
The goal of yoga is to create a connection between mind, body and spirit so that we can become fully integrated beings who are able to experience deep and lasting peace. We can accomplish this using a variety of yogic tools, and I would recommend incorporating more than one to create a well-rounded practice that serves your unique needs. ⠀⠀
So here are 5 ways to practice yoga without getting bendy:
1️⃣ BREATHING - It's so simple, but deep breathing creates deep relaxation so that mind, body and spirit can integrate.
2️⃣ MINDFULNESS - Becoming aware of how you feel in the present moment, allowing whatever is to be what is.
3️⃣ CLEANLINESS - This is called "Sauca" in Sanskrit. Keeping your physical space clean is an act of self love and respect. ⠀⠀
4️⃣ SPEAKING YOUR TRUTH - Called "Satya" in Sanskrit, speaking your truth holds power. It sets you free and connects you to your higher self.
5️⃣ NON-HARMING - Called "Ahimsa" in Sanskrit, this means minimizing suffering in the world. It is an attitude of non-violence toward your fellow humans, animals, the planet, and to yourself.
HOW ARE YOU? The most loaded question you can ask a person with chronic illness.
The lie we all tell, fingers crossed behind our backs.
Prior to April of this year when I began The Chronic Ills, an invisible illness project, I had never spoken publicly about my condition.
I’d only told a handful of close friends & family & hid All Of The Everything™️ behind those two little words.
That all changed when I decided to speak out about using CBD oil to control my neuropathic pain.
For a bit of context: the media in Australia was misreporting the truth of the medicinal cannabis patient access “situation”.
To my surprise, I was met with a deluge of support & kind words. But it hasn’t always gone that way... which is exactly why I “learned” to tell the lie to mask the pain.
Previous to mustering up the courage to speak my truth, you NEVER would have believed I was so unwell from a quick scan through my personal social media.
I could barely get out of bed or use my left arm & hand.
No one had a clue.
I hadn’t been able to work in over 3 years. No one had any idea.
This is the blessing & the curse of an invisible illness.
“I’m fine” allowed me to avoid uncomfortable conversations about the searing nerve pain, the dislocating joints, the crushing fatigue.
I’ve let VERY FEW people in over the years, and for good reason. "But you don't LOOK sick."
"It's not like you're DYING."
"At least you don't have CANCER."
“You’re too young to be THIS unwell”
Comments like these drove my self esteem into the ground as a child & young adult... and taught me to mask it all with the familiar & oh so comfortable lie:
But comfort does not bring about change.
Here, in this Instagram community, we may all have completely different types of invisible illness & disability, yet we all have the same thread of silent suffering, isolation & a smiling facade.
I truly hope that our invisible illness documentary will raise awareness for us all by having those uncomfortable conversations & as a result create understanding & empathy from the world at large.
If you’d like to be involved go to:
No more comfortable lies, ok?
Who’s with me?
A note from my client who signed up for the 5-Day Holiday Cleanse after our 60-minute power session:
“I feel like I’ve re-set my nutritional sense after our conversation. Can’t wait to try the recipes. Just what I needed to get on track before the New Year!" - Mary
You really don't need to wait until after the New Year to look after yourself. It's not about binging and fasting and feeling guilty, it's about feeling confident in your choices and how to navigate the grey area with grace and ease.
Food is not going away, we will always, always need it. So let's figure out how to enjoy it in a way that doesn't make us feel guilty or restricted. Sound like a plan?
If you are looking for: + A powerful 60-minute nutrition session to get clear on your biggest health concerns and demystify all of the conflicting information you have been reading about what is good for you and what isn't
+An easy, made for you 5-day meal plan, guide and shopping list so you don't have to think twice about what to eat
+A tailor made plan to get you through the rest of the holidays feeling great in your body (while still enjoying yourself and partying it up!)
Click the link in my bio to sign up, it’s only through January and spots are booking up quick!
Ooooooooh it's COLD! Been training for two weeks now and feeling good. This little and often approach seems to be helping me at the moment, long may it last. I have #goals to smash 👊🏼wearing @livcyclinguk
I do puzzles for a lot of reasons. But I have noticed a major one is so I can sit and focus in on something while I go over conversations in my head. Maybe it's a conversation I had with someone that I wish went differently... I know I'm awkward, I know I share too much too quickly sometimes, I know that my emotions are deep and wide and I'm not always as tactful as I wish I could be. I regret so many interactions and mull over them in my mind endlessly. Something I wish I said to my teacher when I was in middle school. Something I wish I never said out loud to anyone. Ways that I could have been clearer or more assertive or calmer or sounded more intelligent. Maybe it's a conversation that I am anticipating having to have at some point in my life (that will probably never happen but my brain and emotions want to be prepared just in case it does.) Either way, the thought of these conversations always evokes so many different emotions that as I sit and puzzle while I puzzle, I usually end up teary eyed or occasionally bawling my fuckin eyes out. I guess it's therapeutic... in some depressing way... I also always think that the puzzle I am doing (purchased from a thrift store) probably belonged to some old man or woman who used it to keep their aging mind sharp or to stave off the pain of their loneliness.... so there's that, too... #chronicfatigue#cfs#chronicpain#chronicillness#fibromyalgia#ibs#interstitialcystitis#pmdd#hormoneimbalance#invisibleillness#spoonies#spoonie#spoonielife#anxiety#gad#ptsd#generalizedanxietydisorder#depression#existentialism#existentialist#highlysensitiveperson#hsp#highlysensitive#empath#empathetic
Made yukhoe for dinner. It’s Korean raw filet mignon with pastured egg yolk. On the side, sautéed gai lam, which is Chinese broccoli, more veggies, romaine and cilantro tossed with cold pressed olive oil, raw apple cider vinegar, Himalayan salt and ground papaya seeds. .
I started eating raw meat during Lyme treatment last year and it’s helped me heal so much. I had severe chronic fatigue and brain fog, plus a bunch of other issues like memory loss, bradycardia (heart arrhythmia), migraines, tinnitus, but all that went away after introducing raw meat and eggs. I stopped eating meat and was solely whole food plant based after a master fast in May earlier this year, but recently started eating raw meat again after getting a kidney infection, which lasted a couple weeks. I had cut out foods high in phosphorus and potassium, which can build up in the kidneys causing a plethora of problems. I was in need of nutrients and was starting to feel fatigued. As soon as I started incorporating 2-3 oz of raw meat back into my diet 2-4 times a week, my energy levels increased and I started feeling normal again. Raw meat has high amounts of bioavailable vitamin C and B12, both of which are heat sensitive, which means cooked meat doesn’t have vitamin C and B12 because it was destroyed during cooking. My body doesn’t assimilate cooked meat very well, so I don’t eat it. But when I eat raw meat, my body goes straight into healing mode. I’ve been managing my stress levels and have been transmuting a lot of deep seeded traumas and triggers, plus I’ve made self care a priority. I’ve got a lot on my plate and have had a lot of prolonged stress, so I’m pacing myself the best that I can while providing my body with the most nourishing food #foodismedicine .
#rawmeat#rawegg#grassfedbeef#filetmignon#pasturedegg @vitalfarms #cleaneats#cleaneating#wholefoods#holisticnutrition#holistichealing#realfood#eatrealfood#paleo#primaldiet#grainfee#antiinflammatory#alkaline#grainfree#organicfood#foodthatheals#buzzfeast#instafood#eeeeeats#healthyfoodshare#intuitiveeating#lymedisease#lymewarrior#chronicillness#chronicfatigue
Chronic Fatigue sounds like you're always sleeping. But most of us have very disruptive sleep patterns. Some sleep throughout the day and only awake during the night, some don't sleep for days then sleep several hours straight, and still some go in and out of a very light sleep, as if they'd been awake all along. And the sleep doesn't even make you less tired after all that!
Myalgicenc Ephalomyelitis is a better name for this condition. I may currently be awake but my body is heavy and my brain is foggy. My back hurts and my legs won't move and lifting my arms is a struggle. Eventually I'll sleep, and I'll sleep for a while, but it takes me a long time to get to sleep most days.
It's an illness that really messes with everything. You have to rest, to count your spoons, to decide what you really need to do. And life doesn't provide rests, as I'm discovering this month! But as such it's a difficult condition to manage, and one wrong move results in a flare up.
Today I want to do some college work, drawing and playing games. But I think I might need to stick to college work and games for now. Which sucks, but there we go... #chronicfatigue#chronicpain#chronicfatiguesyndrome#myalgicencephalomyelitis#spoonie#spoons#countingspoons#sleep#sleepproblems#cantsleep#fibromyalgia#fibro
I got my much anticipated test results back this morning and my growth hormone levels were normal. This is good news because it means I don't have acromegaly like my doctor originally thought, but it's also really disheartening because it's the end of the list of possibilities of what could be complicating my health alongside the fibromyalgia. As my dear friend has reminded me each time I got another dead end in my search for a diagnosis and treatment plan, "This just puts you in a position of having no option but to trust Jesus." That's where I'm trying to rest. Please pray for my heart, I'm trying to process that this is my new normal and things won't be changing anytime soon. The hope of diagnosis and treatment of my new symptoms from this year is gone and now I have to pray through how to continue walking through an extended chronic invisible illness with grace and faith. I want to be able to say "it is well with my soul", I'm not there yet but I'm praying I will get there soon.
The gut is the barrier between our inner being and the outer world. It is responsible for the breakdown and absorption of nutrients and it is where the majority of our immune cells reside ready to neutralize invaders.
However, in many people these functions are severely impaired for the reasons listed in the graphic + I would add gluten consumption to that list. This impairment is one of the primary drivers of systemic inflammation and most experts agree that this is the #1 trigger of #autoimmune disease.
If you are dealing with autoimmune disease and have gut issues, this is where you have to start.
1️⃣ Remove allergens and pathogenic microbes 2️⃣ Add in healthy bacteria to repopulate the microbiome 3️⃣ heal and seal the gut with a supplement containing glutamine, zinc, and a few others helped like aloe, MSM, lactoferrin, etc.
Just taking probiotics isn’t going to cut it.
Postural Orthostatic Tachycardia Syndrome, for me I have a Hyperadrenergic Postural Orthostatic Tachycardia Syndrome. It's debilitating, exhausting, and lonely. Many people tell me that of I lost weight, or if I just had some more water it would go away...That's not how that works. Do you think my doctors wouldn't have already suggested That?
A list of POTS Symptoms are -High/low blood pressure
-High/low heart rate; racing heart rate
-Dizziness/lightheadedness especially in standing up, prolonged standing in one position, or long walks
-Fainting or near-fainting
-Abdominal pain and bloating, nausea
-Temperature deregulation (hot or cold)
-Nervous, jittery feeling
-Forgetfulness and trouble focusing (brain fog)
-Blurred vision and body pain/aches (may feel flu-like); neck pain and frequent awakenings from sleep, chest pain and racing heart rate during sleep, excessive sweating
-Shakiness/tremors especially with adrenaline surges
-Discoloration of feet and hands
-Excessive or lack of sweating
Diarrhea and/or constipation
These are not all, plus having just Dysautonomia comes with more symtoms on top of POTS. Here us just a little insight.
Pro Bio 5 is one of the products I've been taking every night before bed. This is why...
Recent studies prove that yeast overgrowth in the body leads to #allergies , #eczema , #weightgain , #headaches , #depression , #anxiety , #chronicfatigue , #ADD , #crohn 's, #IBS , #migranes , and so many other health issues. #doyourresearch
80%of our immune system is in our gut. Many people have tried a probiotic but didn't notice any big changes. Ever wonder why? Go grab your current probiotic! Now flip that bad boy over and see if it has these 3 SPECIFIC enzymes: Chitosanase, Cellulase and Protease. Without these enzymes, candida (also known as yeast overgrowth )cannot be broken down. Try this one for 60 days with a money back guarantee that you'll love it💚💚
More coloring therapy today! Trying to drown out my anxiety and negative thought patterns with some relaxing coloring pages. I also like to listen to my hypnosis tapes while I color (check out my previous posts about hypnosis benefits and my favorite hypnosis app)! 💚💚💚
Jumping on the #2017bestnine bandwagon! Most of my top pics seem to have my mobility aids in them or are my body positivity posts. I’m happy you guys enjoy my journey and my purple rollator. Thanks for a great 2017 and hoping for a better, more pain and fatigue free, 2018!