Happy #warriorwednesday everyone! As we get ready to go into the crazy holiday season, remember that warriors are not born, they are made, and even warriors need to stop and rest every once in a while 💜💜💜
I aspire to be an empowered woman with vision and grace. Soft- hearted, but strong. Respected for my mind. Admired for my heart. Self aware and sure, but above all: always honest, open, and raw. 🙇♀️
🏨 Met with the neurosurgeon today who told me it is in my best interest to have my brain cysts removed before they cause a life-threatening situation. I have to meet with a second neurosurgeon to discuss my incision options, whether an open cranial incision or laparoscopic technique would be best moving forward, and then sometime soon we will be discussing scheduling details. Surgery isn't fun, but my surgeon said that I am young and once this is taken care of, it will no longer be hanging over my head. My colloid cysts could be an explanation for so much of what I have been going through! Intermittent obstructions between my ventricles and CSF could definitely be behind the debilitating headaches, and once the cysts are no longer blocking that space, I won't have to worry about full on hydrocephalus. So, not ideal- but needed. 👨⚕️Because in my surgeon's words, "Twenty- one year olds are supposed to live freely." #braintumor#brainsurgery#spoonie#chronicpain#chronicillness#changes#family 💜
Thinking about this time last year in NYC and getting excited for my first Thanksgiving in the USA and the Macy’s parade. This year I’ll be in the UK, but still having a full on Thanksgiving meal tomorrow night 🇺🇸🦃
Legs up the wall...er window... 😉 Madly trying to clean my messy house and prepare for our Thanksgiving feast with the fam. I got off work at 7 this morning and although i know I should sleep, I will settle for a short nap. I have my daughter, younger son, and grandson Parker here now and can't wait to have the rest of the Brownies (and Wilburs) here together! Today I have to tell my aching body to "just shut the hell up, quit yelling at me, and just do the stuff! You can chill out tomorrow!" It will all be worth it! #lovemyfam#grandkidsarethebest#beinggrammyisthebest#fibroissues#chronicpain
Right now, as I am writing this, the pain is radiating. It’s reached under my clavicle, it’s tapping on the base of my skull. It’s wandering under my left breast, and sending the occasional aching and electrical pulse down to the last two fingers on my left hand. It’s epicentered in my neck, my superior trapezius.
Maybe that ache is the lavator scapulae, or the semispinalis muscles. It’s hard to tell. My neck is soaking with pain, pain that feels like it could choke me. It can get all-consuming. I say to my partner: “it hurts so much it’s interesting”. I don’t scream. I don’t have the energy to scream. Hurting is taking all the energy I have and nothing is left for screaming. At it’s worst, It really does fascinate me. I don’t know what use it is to have a brain that can hurt this much. Why would we evolve this? Is it an accident? Is it the price we pay for being the only animal that perceives the universe? - Quinn Norton
As spoonies, we tend to only focus on what's wrong -- typically with our health. It is important to recognize it but to also care for it. Another thing we do is often forgetting about how our mind is and how everything impacts ourselves. Make sure you take a step back and look at yourself as a whole - not just an illness or disability. Another great thing to do is to take a few hours or even a day to focus on something besides medical and health stuff. Do something that makes you happy whether it be shopping, reading, or taking a bath. Investing in yourself as a whole is essential.
Have you received your routine annual gynecologic check-up this year? These appointments are important to maintain optimal health and to identify any gynecologic issues. This includes a screen for cervical abnormalities as well as a comprehensive pelvic and breast exam. Call (858) 485-0130 today to schedule your appointment!
When I worked at the Village Nursing Home, one of my favorite tasks was calling the weekly bingo games. In honor of these games, I have created Platitude Bingo. Platitudes are banal remarks that are repeated to the level of pointlessness. But since most people are unfamiliar with illness, they fall back on these less than profound declarations. So why not make the best of it, and turn it into a game? Every time a visitor utters a platitude or cliché that corresponds with one on your Bingo card, mark it with a pain pill. 😉#spoonie#spoonielife#chronicpain
More than a year on from Rebecca’s workshop, we had a little catch up!
To my amazement and pure delight, not only is she doing incredibly well, she’s pushing her limits and competing at powerlifting!!
—�—�—�—�—�—�—�—�—�—�- 2016- Rebecca traveled down from Scotland for a 3 hour workshop after I visited her local fibro support group to guest speak. Rebecca told me that everything I had talked about at her group had really made her think about her condition. After years of becoming more and more frustrated with her fatigue, hip and back pain, she had made the decision to come and see me at the studio in Newcastle. I had 3 hours face to face with Rebecca to assess her and get to know her, and she left the same day with a programme designed for her. Today, she has much more energy, her back, and hip pain has gone and she has returned back to work! As always, workshops are the bane my life. I meet individuals and after half an hour can see exactly what they could accomplish. However, left to their own devices to work through a programme (despite the fact that I say to everyone, they have me until they don’t need me) some really struggle! Without the psychological aspects and guidance people struggle. Some do amazing and make me so proud, some are doing really well and then disappear as they fall off the wagon and sadly some never get around to starting.
Getting out of pain is hard work and most will find it too hard, get discouraged and stop. Think of it like a 6pack, totally attainable for everyone. However, how many people do you know with one? Not many right? Because it’s hard! If you really want it you will get it, but it takes time,it takes effort and most of all, when motivation runs out, it requires self discipline and consistency, both of which are hard to produce. #thefibroguy#fibroisaculturallyadoptedlabel#chronicpain#hypermobilityexercise#hypermobile#fibroexercise
One drug made me lose the hair on my head and another gave me a mustache. I was the only Revlon model who could have filmed a convincing advertising campaign for after- shave. My illness became my metamorphosis. It took seven years of chemo drugs and long hospital visits to get my disease to a manageable and chronic condition. I learned to exist with sarcoidosis and created a whole new life. I’m still sick, but my doctor says I look a lot better in person than I do on paper. #spoonielife#chronicpain
A good laugh and a long sleep are the two best cures for anything! °
I plan on doing lots of both this Holiday weekend. Moab, here we come!! Eeeeeeek! °
Hope your upcoming days are filled with family, yummies, laughter and love! 💚 °
Linda’s pain started in her twenties, and she's lived with it most of her life. Her pain gradually got worse through the years, and little things such as getting dressed and brushing her teeth began to hurt her.
Linda tried several different options to achieve relief, including back surgery, but nothing seemed to help. She often had to sleep in a chair due to her pain.
Then Dr. Chayapathy Jollu offered her a trial of HF10, which was successful! She and Dr. Jollu decided HF10 would be a good option for her, so Linda moved forward with the implant.
Today, she is currently reporting 80% overall relief. Her message to other chronic pain patients is, "Do it! It will change your life completely." She explains, “The little things do not hurt anymore." Linda has been actively painting the outside of her house with her husband. She is also excited that she can now lay in bed next to him and not sleep in a chair anymore.
See if HF10 is right for you --> http://ow.ly/wO2s50f9yX6
IT'S ALMOST HERE🦃🍗🌽🍠🍰🍽 Turkey day is approaching, which means today's #CryoFact is all about metabolism! During a 3 minute cryo session, your body has to work extra hard to keep itself warm. This causes a massive spike in your metabolic rate and you’ll burn MORE CALORIES throughout the day (average 500-800) We will be closed for Thanksgving Day and resume normal business hours on Friday. So come on in to boost your metabolism and burn those extra Turkey Day calories!
This could NOT have arrived at a better time! I’ve been down with a headache all morning. I was hydrated, gotten enough sleep, and did some yoga. Got this in the mail, used it, 15 minutes later my headache was gone. I have some other chronic pain in my back and shoulders so I’m super excited to try more of their products. Check them out and use code KYLINDOESYOGA for 10%.
Frustration is possibly one of the biggest barriers between chronic illness sufferers and the world!
Frustration that our bodies keep letting us down,
Frustration that we can't just 'get on with it',
Frustration that people don't understand us...
And that's the focus of todays blog post, the 6 things I want other people to understand about being me.
And that might not all be what you'd expect.
I'd love to hear if you feel the same 💕
These types of messages and posts mean a lot to us here at Natural Form - Studio of Movement. Cathy Hewitt came to us because she was suffering with chronic back pain and sciatica. We have worked closely with her to address these issues and at present she does not have any pain symptoms! We still have some work to do with Cathy but she is making great progress.
Life without back pain really is possible!
This is Cathy's post from yesterday . . . . "I've suffered repeatedly with back pain and have been awaiting major spinal surgery for months. I'm still waiting the surgery to date. Over the years I've practised Yoga, Pilates, Hot Yoga and had acupuncture to try to prevent the agony that I've never fully understood.
For the past 5 wks I've worked closely with James at Natural Form who has helped me tremendously. He's shown me how I should move correctly, made me listen to my body and made me understand the process to correct these aches at first onset. I look forward to a active happy future and will continue to work with James leading my life with a stability.
Thank you James!" - Cathy Hewitt
⚠️⚠️⚠️ Caution !! Extremely real post ahead ⚠️⚠️⚠️ This is what waking up from a night terror (in the day time lol) after the week from hell and no sleep looks like 👍🏼! I'm not ashamed to admit that I'm in a state of shock in this picture, I've just crawled to the bathroom covered in sweat, shivering like crazy somehow got myself in the bath and just held myself in the foetal position until i calmed down, I'm still not out of the bath or properly with it yet an hour later!
Not meaning to be negative but I have to be honest, things are HARD right now, everyday I feel like Lyme is taking a bit more from me, genuinely not exaggerating, it feels like I'm having the life sucked out of me, even my hair has started to fall out. Luckily I'm being well looked after and loved which I'm so so grateful for, I know I will get the treatment I need one way or another I just have to carry on being strong and not give up.
To anyone else who is having a hard time at the moment just know you are not alone, your stronger than you think and you WILL get through this.
Just like it says in the crow "It can't rain all the time" 😜🌧
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Last night we had to say goodbye to my best friend and soulmate of over 13 years. I can't put into words how devasted I am. Max was my whole world. As long as he was there next to me, all was well.
He wasn't himself the last couple days, we took him to the vet and he said he had a bleed in his stomach, a something sarcoma. His previous episodes must have been small bleeds, but this was big and there was nothing they could do. I stroked his face til his last breath.
Falling asleep without him snoring next to me and just being without him is so so hard. He's always been my boy but since I've become unwell the last few years we've spent so much time together, he was incredibly attached to me and I to him ❤ He was somehow even more than a family member to me. The house is so empty, I keep reaching out next to me and he's not there. I have no idea how I'm going to get through this. I know some might understand why this is so hard but dogs are just special. He's given me so much love, so many cuddles, laughs and happiness. There's none of the baggage that can come with human relationships, it's just pure love. I know we gave him a happy home, it's just so hard. It's hard to believe the first photo was 3 days ago 😢
I miss him so much 💔
I think I found a way to push my pain
It doesn’t go far away but it doesn’t hold me as close
Somedays I feel like a hostage, held up in my own body
Fighting with the the transparency of my pain
Somedays my bones feel like they’re slowing becoming exposed
Crumbling from within and piercing through my skin
Shapeshifting saves face
I cast spells often and they never fail
I’ve become drawn to hiding in the light
But I am forever waking up in the dark 🖤
hi everyone ✨
i’m feeling really bad at the moment. My stomach is annoying and i have no appetite at all. I couldn’t even eat a quarter of dinner i just am not hungry at all. also quite nauseous and having cramps/am gassy. i’m cold, my muscles don’t cooperate and overall i just feel really weak. so today i have been taking it easy. Took today off school (not sure whether i’ll feel good enough to go tomorrow 😓), snuggled with the dog, watched a christmas movie and rested. My joint hurt too, hence the pillow under my knees. I’m thinking of saving up for a body pillow but they’re all so expensive 😓 so if you know of any cheap, but good ones, please comment or dm me! i hope tomorrow will be better 💗 how are/were you today??
My parents are here! They brought my husband and I lunch at our work from @aviarycafe. We loooooooove Aviary Cafe- and they do GF crepes and desserts too!
Here I've got their "Is it Morning?" crepe (gluten-free), which is scrambled eggs, caramelized onions, bacon and parm cheese with creme fraiche. Side of their house salad, hold the croutons, please! And then my mocha, which I made at work with coffee, Penzey's hot cocoa and original @nutpods.
NSV: I actually wanted a salad as my side. I'm actually craving green vegs. Wow.
I’ve taken so many painkillers today that my hands are shaking badly! So much so that I can’t take a photo unless I use both hands! 😅😩 Off to the gym to train legs, but even they’re feeling the effects of the painkillers, so I’m not sure how successful the session will be. I’m also in a shit load of pain, so that will no doubt hinder me too. But if I don’t go, then I end up as stiff as a board, and the pain is worse. So it’s a no win situation really. The joys of living with a chronic condition. Sometimes I just really want to drive into the sea to stop it once and for all, but knowing my luck, the tide would be out and I’d get stuck in the sand! 😂🏖🚙💨