Center Parcs (Longleat forest) was so surprisingly disabled friendly, I used my wheelchair everywhere except the pool ( and got out for this photo) where I walked with support from my family. The spa was amazing and had disabled toilets etc, although would be difficult in the actual spa rooms. I loved Center parcs and want to go again for a relaxing forest break🌻
En route to Alberquerque in New Mexico for a three day meeting all about our new education project - Echo. We will be telling you lots more about this next month and Dr Alan Hakim will be holding a webinar with all the details. Exciting times! As Nelson Mandela says, “Education is the most powerful weapon which you can use to change the world.” #itsourtime
ps - does anyone else find these weird positions comfortable to stand in?! Just looked at my feet!!
Hi friends! I’m still feeling cured and beyond happy. Have done all kinds of unbelievable things this week, and you know what Im so happy this change happened during the summer and I have all this free time to enjoy it and no uni pressure! I can’t wait for September and to be able to enjoy freshers properly, have a boogie, activities I couldn’t do before. And you know what I am most excited about is catching the bus to campus rather than driving there to park in the accessible space. I feel so proud about that 😀😍
On another wild goose chase trying to get approved for intensive in-patient rehabilitation. This rehabilitation was recommended to me over a year ago by a physical medicine specialist, a neurologist, and countless physiotherapists. However, when I apply to the authority who is to grant/approve this treatment I am constantly met with opposition. I have been denied 🙅🏼 once already, and this time the application was a concerted effort by my public #fysio , general doctor, and the disability city planner for Helsinki. This team worked together to make a rehabilitation plan in hopes that it wouldn’t be refused (again). A multitude of doctors have asked for this rehabilitation for me, so why does another authority get to deny me from the care I need? After waiting 5.5 weeks for the answer from (KELA / social insurance institution) I receive a clarification that asks for a statement from a public physio? The entire application was made by MY public Physio and doctor? I cannot understand how this keeps happening to me? I am aware that many people with similar diagnoses have been awarded this very same care that I’m now begging for. I personally don’t know what paths or difficulties they incurred in this pursuit. I do know that it is mentally challenging, and painful to watch my life go by from a couch everyday because I cannot get the care I need to manage my illnesses. It’s so utterly painful to have to depend on the thing that broke you, to also help you. To constantly beg for the care that is suppose to be available feels degrading. This system is very fragmented and needs serious reform. It shouldn’t be this hard to get proper medical care. I’m just a person in desperate need of rehabilitation, begging a budget-stretched medical system to just do their job. Help. ➖➖➖➖➖➖➖➖➖➖➖➖➖
My doctor decided that getting a completely new g-tube would be the best plan of action.
So she's going to remove my old tube and let it close. After that she'll make a new incision to place a new tube.
I'm nervous and frustrated but I know this will help me in the long run. I'm just not looking forward to the pain and having two holes in my stomach.
I'll update soon ❤️ #gastroparesis#feedingtube#gtube#ehlersdanlossyndrome#spoonie
What shoe size are you? I’m a UK 5, do I aspire to be a size 3? Erm... well no, no I don’t.
I remember as a teen studying how the Chinese would bind feet to make them smaller. I couldn’t get my head around it. Why would you want smaller feet?! Why not just accept the feet you have and buy a bigger shoe?
I didn’t even consider the fact that each morning I’d lie on my bed, having not eaten breakfast, breathing in as best I could to try my very best to get the button in the hole of my jeans. I knew that if I could do the button up, I’d manage the zip. It didn’t matter that the waistband actually cut into me during my day, that I’d arrive home to get my jimjams on and see bruises and cuts on my waist from where my jeans had rubbed me. It didn’t matter that I couldn’t eat a thing all day in these. I had managed to fit into THAT size and therefore I was the Queen...but hang on, what if I could eventually get into an even smaller size?! My little mind would whirl with the options.
It’s taken years and years and years of personal work to let go of these stories, opinions of myself and love my body just as it is. It’s taken two years of being very very poorly, being hospitalised, surgery, a threat of never being able to walk again and the discovery of EDS. It’s taken so much time, effort and research into finding foods that make me feel good, movement that makes me feel good and so much practise at looking in the mirror.
This week I’m talking about society’s influence on our body image & food thoughts. There’s a video on IGTV and my Stories which I’ll save highlights.
I chat about how 81% Of 10 year olds worry they are fat, which absolutely breaks my heart - yet I remember being 7 or 8 and desperately pulling at my thighs and tummy.
I also delve into a study held in Fiji which looked at the effect the western media had on a county that had never consumed it before and up until they did, only had one reported case of anorexia nervosa in the whole country.
I’d love to know your thoughts and encourage you to do your own research on this. As we look into the way in which we can be influenced, we can untangle so many habits, behaviours and thought patterns.
The diagnosis of any chronic illness is a tough one to cop. The quick fixes we all hope for simply don't exist in that realm. It's sobering at best, and the absence of cures and overabundance of unanswered questions can be hard for people to wrap their heads around. Do they know what's wrong yet? Has she just given up on things returning to the way they were? Is it not obvious that what she's doing isn't working if she's not getting better? Has she got a second opinion? I could list a barrage of my own unanswered questions, and I could spend the rest of my days expecting those answers and remedies to come my way. While there's a whole lot left to discover, and I fully intend to do my best to keep uncovering it, what most people don't see is that we do, in fact, have some tangible info we can grasp onto in the meantime. Link in bio for some of the nitty gritty deets... #ehlersdanlossyndrome#pots#nervepain -
PROJECT // @bay.of.hope
STYLING + SILK RIBBON // @lines_and_squares
IMAGE // @freedomgarveyphotographer
MODEL // @katie_j_sinclair
HAIR // @idohairhq
MAKEUP // @amoremakeup
KIMONO // @jenspiratebooty
FLORALS // @delaterre_
LANTERN // @empireeventsau
FEATURED // @whitemagazine
School and chronic illness -
High school and especially the last year of school is a stressful yet exciting time with heaps of ups and downs. And this is all without having to deal with anything on top of this task! Having a chronic illness definitely makes everything that little bit harder.. however I try not to let that get in my way! I really enjoy school both in an academic and social sense and am very lucky to go to the school I attend. They understand that sometimes I won’t be at school for a couple days or might pop a shoulder out doing some mundane task... -
To be honest I don’t have all that many pieces of advice for those trying to get through schooling with a chronic illness because I just take every week or day as it comes!
If I were to give any advice it would be:
1. Know your limitations, don’t overdo something unless it’s truely truely vital
2. Avoid sick people because their colds turn into the plague ahah
3. Talk to people about what will help you! Wether that be rest breaks during exams or help organising your work if you aren’t feeling great. You might be surprised how much people are willing to help if you ask!
As I approach my last month of high school I am looking forward to the excitement of leaving along with the fear of not having something to do all the time! After sitting my exams in November I hope to look fondly back at my time with school and all the people who made it a great time. (You know who you are 😉)
Long Medical Update: Last week, I finally had a tilt table test after a year of doctors saying “yeah it sounds like POTS” but then moving on with no official diagnosis and no plan for management. So here I am at the tilt table, certain it’s POTS after months of monitoring my heart rate and watching it jump at least 30 bpm during my own “poor man’s tilt tables.” And then, in that important moment when I was being tested, my heart rate decided to not jump up during the test. I had a vagal response 3 minutes into being tilted upright, with a drop in blood pressure to a terrifyingly low number (they had to increase the IV fluids to keep me conscious and continue the test), and my heart rate hopped around erratically throughout the test, as it often does. So the tilt table was positive for vagal response but negative for POTS .
At this point, I am so ridiculously looking forward to my appointment with a specialist in a month, and hoping he can make some sense of what direction to go with these tilt table results. My lightheadedness and dizziness seem to be getting more frequent and more severe, and I’m already doing all the recommended non-pharmacological things (hydration, exercise, staying cool, etc), so it’s really time to look for other ways to manage my symptoms .
And yes, I got delicious, post-tilt-table, still-mostly-out-of-it, can-barely-keep-my-eyes-open ice cream 🍦 .
Anyone else get an unexpected tilt table result? .
👉🏼Going through a quarter life crisis & decided to channel my impulsivity into changing my Instagram handle instead of moving across the country 🤷🏼♀️
Så var man tillbaka där allt startade för 20 år sen (!), hallen som var mitt andra hem, där jag bokstavligen växte upp med min första kärlek; gymnastik. Jag kan inte låta bli att ibland tänka hur mitt liv hade sett ut utan gymnastiken, hade jag varit lika trasig nu om jag inte ägnat mitt liv åt så pass hård träning? Eller har det snarare hjälp mig med den grundstyrkan jag har i mina muskler som gör att jag någorlunda håller ihop och inte luxerar mina leder varje dag? Det är omöjligt att veta men jag hade valt gymnastiken om jag fick välja igen, det har gett mig så enormt mycket, något jag inte skulle välja bort för allt annat 🙌
Så vad gör jag här idag? Jag är tillbaka för att träffa en ny fysioterapeut för ett nytt element i min dagliga kamp för att bli bättre. Vattenrehab och det ska bli så spännande! Den enda gången jag varit utan någon form av fysioterapi eller rehabilitering sen 10års ålder var när jag bodde i Australien, så ni kan förstå att jag är exalterad 😄
Nu jäklar blir det nya tag! #stockholmtopgymnastics#gymnastik#gymnastics#fysioterapi#ehlersdanlossyndrome#eds#spoonie#chronicpain#invisibleillness
Y’all, today has been really. Freaking. Hard. From start to finish. I am so lucky in that my symptoms don’t usually affect my day to day life as long as I stay on top of treatments. Today? Nothing seemed to help. Tachycardic, hypotensive, endless palpitations, a gnarly headache and so nauseous even after my scheduled IV infusion. So easy to get frustrated and think “why me?” but today I’m trying to just be thankful for the things that have gone right. Luckily I had that IV infusion or I’m sure I would have felt worse. Luckily my favorite nurse was there this morning to make everything go smoothly. Luckily I work somewhere where those who know me have been super understanding and patient. Luckily I have best friends that are medical providers and can offer love and advice. Here’s hoping tomorrow is a much, much better day. And here’s to all of you out there having similar days. Hang in there, warriors. ❤️
Hay veces que no entiendo porque pasa nada. Por qué razón soy una persona diferente ahora que hace cuatro meses. No decidí bien y pasó factura. Y ahora me castigo. No es justo para mí, pues ya me castiga el dolor, el hastío de estar todo un verano siendo improductiva, sintiendo que me estiran cada noche de arriba hasta abajo de mi espalda. Supuestamente debería cambiar, mejorar, pero solo empeora. Y luego me lo invento todo, porque así somos los enfermos crónicos: hipocondríacos. Ya no soy la misma, ya no. Me pitan los oídos, me molesta la música. La tensión y la rigidez me despiertan mil veces por la noche y estoy fatigada todo el día. ¿Alguien me cambia el cuerpo? Prometo que solo será un ratito... #ehlersdanlossyndrome#estonoesdelsed#nomegustallorarlealmundo
The weather really brightened up yesterday so I made overnight oats for this morning because it was so warm :)
They were so yummy 😋
It’s got grated apple in it and I topped it with almond butter.
This almond butter is from @aldiuk and it’s really good! It’s so much nicer than the daylesford one and at a third of the cost! I highly recommend it.
Have a good Tuesday.
Hi guys! I finally made a GoFundMe to raise money for an electric wheelchair.
As many of you know, I am chronically ill. I have POTS (postural orthostatic tachycardia syndrome) inappropriate sinus tachycardia and Elhers Danlos Syndrome. This makes it hard for me to get around by myself! More info in bio with my GoFundMe link, link in my story and I will post it in the comments below. Feel free to dm me with any questions, just please remain kind and polite 💕 and share if you can please!
im going to be doing a #giveaway soon! it’ll start when i reach 500 and end when i reach 1k. stay tuned to find out what i’ll be giving away!! (and no, this isn’t the super exciting announcement)
check out my shop! @doodlesanddoodle
follow my pawtners!🐾
Had another appointment with infectious disease this afternoon.
We took a look at the CT (I should have taken a picture of it). The left maxillary sinus is full of fluid and the right ethmoid is a bit “cloudy”. I am pretty sure the infection never went away from May since nothing changed after those antibiotics.
Tomorrow I start 21 days of antibiotics again. And then we will see what happens from there.
If the fever persists I am going to see an ENT but if not the antibiotics did their job.
Part 3: Genetics don’t determine our health. Stress exposure does.
That’s because our genetic tendencies are turned on by stress. So if you have a genetic predisposition to autoimmunity (such as Hashimoto’s, MS, lupus, rheumatoid arthritis, and others), it is most likely to show up when your body has been stressed.
A lot of it comes down to something called methylation.
METHYLATION is how our bodies use B vitamins for good things like making healthy new cells, protecting our DNA and processing neurotransmitters.
Without healthy methylation, we become susceptible to the negative effects of stress.
Taking the right amount of B vitamins for your body will help protect you from stress.
HOWEVER, it is important to know that if your body is currently overwhelmed by stress, then you will not be able to use B vitamins effectively and they could even make you feel worse.
This is especially the case if you have genetic SNPs like MTHFR, MTRR, CBS, and others.
That’s why the BEST first step is to address your stress, no matter your genetic predispositions.
As you reverse the effects of stress, you’ll also be able to reverse and prevent health issues even if in your genes. 👍
By knowing your gene SNPs, you’ll have even more power to know what your body needs.
Learn more about how to recover from stress in my Guide to Adrenal Recovery and 7 Day Stress Reset at link in bio @drdoniwilson
A hard 160kg single from yesterday with a bonus scene at the end
Jack- “That was pretty romantic”
James- “That was arousing”
Bas- “I thought there was going to be more”
Me- “My knee wraps are really tight” +127.5kg 2x2
Body weight today <72.5kg despite eating SO MUCH and 4 days out!!!! 🎉
@australianstrengthcoach @basebodybabes @cameronoreb @jamesyammine @mmunozpowerlifter @jessdowery @fernnfern @_kevinyuan @nickockystrengthcoach @thebodybuildingphysio @jackritchie.co #powerlifting#squat#ehlersdanlossyndrome#spoonie#girlswhopowerlift#thisisfemalepowerlifting
Oh hey!! 🙋🏻♀️ There are a bunch of new faces here so figured I’d introduce myself. I’m Shante’ (shawn-tay) and this little space is where I’ve been sharing my journey of self love & transformation. Go back a short 5 years and I was NOTHING like the woman you see here. ✨
Long story short- I was an angry, apathetic, alcoholic girl who’s spent my time depressed, drunk, hungover or JEALOUS of people living lives they loved thinking its because they had things EASIER THAN ME. ✨
My ex fiancé begged me to have a baby drunk at a music fest and everything changed overnight. I had so much I wanted to do before being a parent and felt ashamed of the dysfunctional cycles I was repeating so DID SOMETHING ABOUT IT. ✨
First it started with Beachbody Coaching to help me get healthy after years on diet pills, disordered eating and hours gyming not giving me results I wanted. I thought getting the dream body would FIX EVERYTHING including my self esteem. What I found was a love for myself in learning to get fit the healthy sustainable way for the first time in my life! ✨
Fast forward a year and I’d lost 70lbs, found myself and dumped the douche who eventually turned abusive 2 weeks before our wedding. I found YOGA and discovered who I really was on my mat. I reconnected with my twin flames and 5 months later we eloped in Harry Potter Land. We traveled full time for 18months living in Miami, England, NC and Georgia. ✨
On Jan 2nd 2016 discovered we were pregnant with the baby who inspired my change from the beginning. 6 weeks later I was diagnosed with a rare condition called #EhlersDanlosSyndrome and told I’d die if I kept the baby. That’s when I found my true warrior strength. Told the system to fuck off and had a magical #homebirthbaby . ✨
During pregnancy my #clairvoyant abilities started returning and my calling as a Healer and Light Worker became my main thing. ✨
A second unplanned pregnancy shifted things dramatically, we moved from our hometown in Idaho to Portland, OR and brought baby earthside at home again. It was so hard on my body and I was dislocating ribs on the daily. Postpartum hit like a train, I ended up on the ER with an infection. Att #7weekspp (cont👇
Feelin like there are ice pics in my head. .
While I didn’t have classes the first day of the semester, I worked many more hours than my usual trying to help other students with disabilities be prepared for the semester. My body is exhausted and I’d be lying if I said I wasn’t in a lot of pain. .
I’m honestly not sure how I’m going to sit up through class from 9:20-2:00 tomorrow....wishing I was Sheba and could just sleep. 😂