There is a lot of interesting evidence out there on sleep and how a lack of it can reduce our tolerance to pain and increase our risk of injury.
I've recently picked this book back up again. I bought it to try and read something that wasn't 'academic' all the time but it most definitely is 😂 However this is designed to attract all kinds of readers, not just those with a scientific background. I would highly recommend!
✨ #improvingyourlifethroughmovement ✨
I find this hilarious for some reason. I’m in therapy right now (I’m not ashamed of it), and my therapist specializes in treating depressed people who also have chronic pain. She’s been teaching me mindfulness. I find it kinda helpful. While there are definite benefits, I do think it’s overrated. Some folks act like if you just practice mindfulness, you’ll float away on a cloud of peace and your pain will evaporate and you’ll become one with the universe or some stupidness. But mindfulness, for me, has just been about noticing and accepting- how to handle the intense pain without flipping out. It’s really freaking hard, because every cell in your body is screaming something is wrong. They’re sounding the alarms. That’s what pain is- a big, flashing red warning. So your body goes into fight or flight mode... but that means if you’re in pain all the time, you’re in fight or flight mode all the time... Exhausting. Unsustainable. Miserable. So if mindfulness can help me get out of that and into just living with pain, not being ruled by it, then it’s worth giving a shot. 🤷🏻♀️
I haven’t reached a point of not needing a doctor to reassure me that what I’m feeling in my body is real. So each desperate journey to the surgery, leaves me clutching a new bundle of meds to try. It always seems pointless to ask for help, then not take what help is offered. However, so far I have hated every one I’ve tried. I am very reactive to medication. This weeks’ tablet was Mirtizapine. The purpose to relax my muscles and aid sleep. I took a half as advised.
I have decided to rename this drug Rip Van Winkle. 24 hours later, still groggy and a bit dizzy, before I managed to rouse from the sleep induced coma it inflicted. I tried several times during the 24 hours to wake myself resulting in a couple of moments of sleep paralysis. It was like something out of a horror movie. It was frightening. Not doing that again. Ever.
I know it does work for a lot of people, so I’m not rubbishing them. Sadly, it’s not for me. Roll on next experiment in medicine.
0 1an hour ago
Orla has documented a recent flare up due to a ruptured ovarian cyst.
@Regran_ed from @orlanidhonnaile - Well this might be the scariest thing I’ve ever posted... and not just because I’m not wearing makeup 😂. But this is endometriosis. This is me during a flare. I never in a million years thought I would share something like this, but I know how hard it is to understand the pain that someone is in when they might look okay, but this it what you don’t see. You don’t see the tears and the frustration, you don’t see us fighting with our bodies to just get out of bed or to do things other people don’t think twice about. Im not sharing this video for sympathy, I’m sharing it so that the next time you judge someone’s illness based on how they look, you might remember how much energy it’s taken for them to look okay when chances are they don’t feel it. I try to remain positive as much as I can but I also want to show the reality of living with this disease. 💛 (also I’m going into a career in film because I was so proud I figured out how to speed this up) •
#endometriosis#endometriosisawareness#endomakeyourselfaware#invisibleillness#chronicillness#chronicpain#endoflare#chronicallyill#spoonie#butyoudontlooksick#1in10#hospital#notjustabadperiod#periodproblems - #regrann
Another HOT OFF THE PRESS announcement!! CAM has been working secretly with Back on Track to create dog snoods... what I hear you say?!? Therapists often discuss the neck as being a forgotten region ... full of secondary muscular compensation from weight shifting away from the source of pain ... which overtime becomes a painful focus on top of the original problem!! Well what can be done ?... what would you do?.... a very simple support would be warmth... but most coats neglect the neck!! Here comes the snood with Back in Tracks slick design and superb materials !!! Too exciting!!! Available from
In stock now!!! #shop#neck#warmth#physio#dog#canine#chronicpain#arthritis#arthritisawareness
When you don’t bring your wheelchair but need a ride 💁♀️
My legs felt like long gangly jelly giraffe legs on Saturday and I kept losing balance and wibbly wobblying around, the wheelbarrow rides saved me falling and also prevented fainting 🙌must say it’s not as comfy as a wheelchair lol but it was great craic! A bunch of weans saw me getting a ride so they grabbed a wheelbarrow and began racing each other up and down taking it in turns, it was nice to see them having good fun! Wheelbarrow rides were pretty much the foundation of my childhood, my daddy took me everywhere in a barrow - so having Ed trundle me around brought back some really good memories from when I was wee 😊
Today I’m really not feeling great (payback is a biatch) but I’m still happy despite all my symptoms flaring because I’m cosied up in my deliciously soft comfy bed, Maya is cuddled up beside me (smelling of Pantene instead of fox poo!🙌) and I’m going to rest as much as possible and enjoy this slow start to the week👌
Happy Monday folks, hope this week is a good‘un for youns!!🍁💕
📷: @alicevb90 & @cpfcrox#autumn#fall#pyopumpkins#pumpkin
🌻Scoliosis & co. Accurate representation and information matters. Recently I’ve grown frustrated with misrepresentation/misinformation of some of the spinal conditions associated with heritable connective tissue disorders (hCTD). I no longer believe in an IG call out culture, so instead I want to share these infographics that I’ve spent a long time making on the main (not all) spinal conditions associated with hCTD’s. I have Marfan Syndrome (MFS) and have a lucky dip of spinal conditions from it. I suffer from a congenital (born with) scoliosis which is very mild (5-10deg) but an extensive postural scoliosis, which is a result of my hypermobile tissue. I also have a significant kyphosis. All my life I’ve been tormented by family for ‘slouching’, my terrible posture, hearing ‘tut tut you’re getting extremely round shouldered young lady’. I would try so desperately to have the ‘right’ posture around others, but I couldn’t, because it was more than that. This combination is actually called kyphoscoliosis. For me, making sure I have better posture will not cure it. I suffer a lot of pain near my scolli when driving, and also cannot wear a bra without immense discomfort (so I rarely do. #freethenipple). I also have spondylolisthesis and Dural ecstasia. These cause me the greatest issues. I cannot stand more than a few minutes at a time due to very severe pain. I have to cook, wash the dishes etc by sitting down on a wheely computer chair. I cannot enjoy walking any distance and all the activities that come with it; walking, shopping, at the beach etc. Many people with MFS need spinal rod surgery so I’m very lucky I don’t at this time, and hope I never will. There is no treatment or cure for my dural ectasia, and surgery is far too risky in MFS for the spondylilolisthesis. Instead I manage all my spinal involvement with strengthening physio, pain management, heatpacks/ice packs, meditation, posture belts/devices, and a good attitude. Please feel free to share these infographics I’ve made. They are focused on people with EDS, MFA & LDS. Spinal involvement can range from mild to severe and debilitating like me. All sources are peer-reviewed medical journal articles 🌻
After a week of suffering and a wound infection yesterday I started to feel good and could see the light at the end of the dark tunnel I've been in.. this morning mother effing nature decided to screw me over and give me the worse ever period style cramps along with heavy clotty bleeding.. so me and Dumbo water bottle are back in bed, back on oramorph and spending the day curled into a ball being miserable & pissed off #endometriosis#endosister#endowarrior#postop#healing#chronicpain
tomorrow is the day I’ve been most afraid of all week. Tomorrow I meet with a doctor who is interested in trying to help me in my current crisis and I also meet with the doctor who is choosing to play god with my life. I am terrified. I’m trying so hard to think positively but I am so scared of what the decision will be. Thankfully today I got to spend some time with my friend and her pups, and I also had another friend do me a huge favor which made my evening a little more tolerable. I don’t think I’ll be able to sleep at all due to my nerves but I have Netflix, tea and a colouring book to keep me occupied for now.
Pain. Nausea. Arrhythmia. Fatigue. Weakness. Fever. Brainfogg. Tremor. All other symptoms. They're always present no matter what I do. And everytime I do something spesific (something other than just lying in my bed in the silence) the symptoms usually get worse. And when the symptoms go worse there's never certainty if they'll ever go back to the easier level again. This illness can go worse. At some cases it will go worse. It can get better too but not to be *cured*! At least not yet. #curemecfs
I've been struggling a lot lately. Past two and a half weeks have been extremely hard. I've had to consider calling an ambulance couple of times as I was really scared by my symptoms. Luckily it seems that little by little I'm recovering from this recent flare 🤞🙏 I just need to remember take it easy. Not to get too excited everytime I feel like I have energy enough to do something. And that is so hard! Too many times I consider myself healthier and more capable than what I truly am.
"They think I'm acting more ill than I am. The truth is: I'm acting much less ill than I am."
I hate my legs. Not because of cellulite or thread veins or lack of thigh gap, or any of the shit most of you are worrying about. I hate my legs because they hurt. I woke up in pain. I have to take my car to the garage today. So I can’t go anywhere or do anything because I’m disabled by them. I should be able to walk home from the stupid garage. I should be able to walk to get some stupid washing powder. But I can’t because I woke up in pain and if I want to be able to go to work tomorrow then today I need to rest as much as possible. And I am trying to lose weight, because I know that will help, but I can’t exercise because my stupid fucking legs both hurt so much. And it’s shit. And I want you to know it’s shit, pretty much every minute of every day it’s shit. And yes I am well aware that the world is full of people less well off than me, but that doesn’t stop this being SHIT.
0 111 hours ago
Drenched in oil & Bliss after the Fierce Feminine & Free - Feminine Leadership Retreat @soulshinebali@magnoliachirowellness Such a blessing to share my gifts and to have them fully received by 20 powerhouse women. We are each other’s medicine 🔥🌺🦋
You’re the worlds biggest asshole cat 🐱 and yet no one on earth 🌍 can make me as happy as you 😍. You are and always will be the reason for me being alive and mentally stable. I never thought in my entire life, that my chronic illness would lead me to a dark and painful sadness or make me feel this hurt. It wasn’t weakness. It was an emptiness. But a small little fluff ball changed EVERYTHING! No human, no creature, no love will ever come close to you my darling ❤️. I don’t care to be a crazy cat lady because with you I am happy and sane 💚
1 43 hours ago
Pt. 3/3 #chronicillness#disability:
I prefer not to make comparisons between circumstances, mainly because I know suffering is still subjective and there’s no possible way to measure who has it worse and who has it better. I guess I just don’t get the impression that what I’m going through in particular makes me extraordinary or special, it just sort of is what it is, and while it’s true I wasn’t entirely born like this, it’s been so long I hardly remember what a “healthy” baseline for existence is.
I think everyone has expectations for life, and that's okay and normal; we all have goals and something to look forward to and fight for. But we also have to learn when to balance them out with realism, to not think less of ourselves if the hopes were too high and we don't always achieve and cross off every little thing on the list. It doesn't mean we are failures or don't have incredible discoveries to make in our futures. Life is a series of gifts, sometimes we must return the ones we are given initially, but we can receive something else that will still make sense; I hope that this made sense.
Thank you, that is all. 💜💪🏻 ________________________
Pt. 1/3 #Chronicillness#disability:
I feel like celebrating small steps in a safer direction and enduring the setbacks is more of the impact I would like to have overall as opposed to things being interpreted as the “worst case” or a life sentence that must be continually devastating.
It just isn’t for me when I reflect heavily. None of this was shocking when I was admitted on the 3rd. I have done research for 10 years and didn’t need any sort of warning. I know from the outside, your perspectives and emotional responses will be different, and sure, many naturally latch onto pity, confusion, aggravation, and can’t resist the urges to begin frowning or reciting that they’re sorry.
But being a supportive person means just listening and giving the one struggling and surviving the space and time to discuss it on their terms, without dismissing or diminishing their value and individuality along with it. My personality is in many ways separate from disease, even if they don’t always play nice with each other or agree on the way I should do things or how I need to spend my days.
The worst thing isn’t being sick. It’s being labeled as a charity, or others not quite realizing that their language centered around the topic of health matters and either makes the journey more pleasant and just a simple fact/reality of being alive, or it makes it shameful and burdening, leaving me wishing I hadn’t said anything so openly.
Yes, I advocate and am raising awareness.
Yes, I want everyone to understand this better than you may have previously.
But no...it shouldn’t change our relationship in an off-putting or uncomfortable way, it’s meant to make YOU more accustomed to my day to day as well, so when anything you’ve never experienced happens to me, you’ll learn to accept and react to it in a way that’s similar to how I do. It should become more second nature, even if it appears scary, strange, and out of the ordinary.
0 87 hours ago
Why should you care about all my posts about Plexus and gut health? I know I am starting to sound like a crazy obsessed person.
So how can Plexus help with so many things? 🤔
✅ Answer: Blood sugar, Inflammation, and GUT health are THE root causes of many issues and the Plexus products address ALL of these.
🤷🏻♀️ Google your medical/mental health issues and "leaky gut" to see how they are related.
🗣 Every. Single. Ailment. I have suffered with for YEARS was related to those three things!
This may not be for you, but please help me spread the word. I WISH I had known about this sooner. I wasted way too many years feeling miserable! Tag a friend who could use this!
To me, my chronic illnesses are ever-changing and all-consuming.
I feel like I never get a break and then when I do have a sudden spurt of energy I'm too scared to use it. What if I end up in hospital again? What if I have to have another dreary week in bed?
ALL-CONSUMING. As it really does take all of your energy to balance what you must; whilst continuing the fight on.
EVER-CHANGING. As nothing is ever straightforward; I've hit so many dead ends and beat myself up about having to turn back.
We all struggle. We all have different stories. Different words to describe what out daily pain feels like. What our chronic illness means to us.
I know how hard it is to describe your predicament with a stranger or even a loved one. However, we all need someone who understands.
Let's create more awareness for those who often struggle in silence. 💛💛💛
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3rd bladder op done ✔️🤙🏽all went okay and woke up with a Foley catheter so no dramas this time. Time for rest & recovery with everything crossed this helps 🙏🏽 I am so so grateful for alll the messages, I feel so lucky to have so much love coming my way 💗💗💗
Aaaaand the chest tube is gone!
Just met with the lung surgeon. All went well on his side of things too. Meeting with him next week for a check-up and chest x-ray to make sure there’s no small lung collapses or anything like that.
Each day is a step closer to my new life 💛🎗💪🏻