What a disastrous day!!! It started well with a lazy morning with my favourite pooches then coffee out with the parents and the pooches.
Then on the way home the dogs went mad at some protesters at the roundabout and made me jump out of my skin. I haven't had enough salt today (I hadn't realised til this chain of events began) and my heart rate shot up to around 130 bpm roughly. Due to the lack of salt, my heart rate did not come down so when I tried to get out of the car, I met the gravel on the floor!!! I haven't hurt anything other than my pride (and scared my parents half to death!) But the crash to the floor led by my bad leg has caused a split in my brace! Guess where my spare is...? England! So we have gaffer taped it and hope for the best til I at back to my house on 4th January!!! Oops!
#posturalorthostatictachycardiasyndrome #spoonielife #ehlersdanlossyndrome #passthesalt
- really should've gone to the pharmacy and asked about the salt tablets shouldn't I?! 😂
DON’T SAY THESE🤢
TW// mention of eating/food. Current place is laying on the couch in agony, so please enjoy this photo from better times. I had quite a few different scheduled posts, but in the midst of my GI flare I decided to fit my mood with this post. Here’s some things I’ve been told this week that everyone with a GI condition is tired of hearing:
•Have you tried being vegan?
•Have you tried exercising after you eat?
•You’re full already? Are you sure?
•Why aren’t you eating?
•I’ve had a stomach ache before too, I get it.
•Maybe if its your favorite food you’ll be able to eat.
•I can’t imagine not being able to eat whatever I want.
Imagine if you had the stomach flu... but it never went away. Instead every day you woke up nauseous, in pain, and bloated. But you want to eat. You’re STARVING. You’re just unable to get what you need. That’s how I can describe Gastroparesis in a very basic form.
People with GI conditions want to eat. I guarantee we’ve tried almost everything you’re going to suggest. I know you want to help, and you’re just trying to be nice. So, how can you help? Just. Be. Supportive. Ask if that person needs anything, have their back when you go out to eat (this can be a hard place), don’t force them to eat, and just be patient. Try to listen to their needs whatever they may be. If they want to try to eat something, let them. If they don’t, then let them. Every day is a new day and a different day for anyone with a chronic health condition.
I’m looking for any and all natural remedies to ease pain and inflammation. My spine/pain doc, who’s also a anesthesiologists, recommended turmeric and black pepper. I hear ginger is good too. So here we go. 2 drops 1-2 times a day in a gel cap!
What an amazing time we all had at our Christmas Meeting last week in Leeds! It was lovely meeting new members, seeing you all ticket hunting on the tombola, chatting and enjoying all the nibbles you brought with you then having our obligatory group photo we all had so many laughs (photo evidence says it all for me) amongst our wonderful Dazzle of Zebras.⠀
We have raised a fantastic £318.50 to support EDS UK so thank you to all involved!⠀
A sincere, heartfelt thank you to each and everyone one of you who came with your family and friends, making this such a successful event for us all. You’re all wonderful and I think the world of each and every one of you.⠀
Let’s make 2019 our best year yet!"⠀
~ Lisa Backhouse, Volunteer Area Coordinator for Leeds⠀
Join your local support group today - membership is free! Visit ehlers-danlos.org⠀
🌿Happy Monday 🌿
It’s that time of year, parties, work that needs to be completed before Christmas, gifts to get, food to buy. I find it all to much. It’s a highlighter to all the things Im unable to do and like there is a buzzing cloud of anxiety every where and wanting to swallow me up. Im trying to ignore it. I’m trying to say no with out guilt. I’m trying to join in, in bite size chunks. I’m trying to be kind to myself.
This week I have to be at an event, I have been working towards it for months and I still have a lot to do. I need to be on form. I’m going to take things slow and eat well, and try and rest. Im going to try my best. Im going to get sh!t done! (And look after myself)
Not all days are easy. Today shout out goes to this young lady. I was reading her story and it really inspired me. We all start somewhere when we begin again. My point is that she never gave up. Bones may break. Blood may spill but scars will heal and become a part of our journey. Repost from @chronically_ry
- Some days are just hard. Today was one of those days. I worked 7pm-7am and then rushed home to jump into bed so I could nap a couple hours before my doctor’s appointment at 11:15. Well my body had other ideas. (what else is new?) It took me forever to doze off when I got home. I slept about an hour and a half, ran to my appointment, and sat in the exam room until he could finally see me...at 12:45. 🤦🏻♀️ Rushed back home after my appointment, jumped back into bed and fell right asleep...for about 2 hours. Now I’m back for another 7pm-7am shift tonight and I am RIDING that struggle bus. Just a few years ago I was able to switch my sleep schedule at the drop of a hat and survive on little to no sleep without any issues. Now it leaves me dizzy, nauseated, and with this throbbing full body pain that makes moving at all agonizing. This morning felt like that. And I broke. I broke because I felt awful. I was missing my people and feeling sorry for myself. I broke because I’m 26 years old and I’m getting fitted for a wheelchair because my legs don’t work. I broke because I love my job so much, but it’s killing me and I’m not sure how much longer I can keep it up. I broke because sometimes, you just have to in order to stay sane. But then I pulled on those old familiar navy blue scrubs, I wiped my tears, and I drank a shit ton of coffee. I limped into my department and I took care of my patients on what for some was the worst day of their lives. And not a single one could tell that only a few hours before, their nurse was struggling to walk down the stairs in her house.
Sometimes, life is hard. And that’s okay. Embrace your good days and your bad ones. Drink your coffee. Put on your big girl panties. And keep moving forward.
#disability #ehlersdanlossyndrome #eds #ehlersdanlos #posturalorthostatictachycardiasyndrome #wheelchairbodybuilding
Feeling better than I was last night if you saw my story. Physically I’m not too bad today, general rib pain but other than that, nothing is majorly hurting.
Mentally I’m still not the best but a lot better than I have been this weekend. All weekend I just felt sad and angry for pretty much no reason? Who knows! Maybe I’ll figure it out at some point...
In other news I found out I have 4 days left on this work contract, 1 studio day left and then I actually get my first break in 4 months 😁
#edsawareness #ehlersdanlossyndrome #ehlersdanlosawareness #myedsdiary #chronicillness #mentalhealth
Got through the day 🙌🏼🙌🏼🙌🏼 tired and sore but my mood has improved a bit so that’s a win in my book 😘 no makeup and bags under my eyes permanently from very little sleep 💤 I wake up every damn night all night 😒 mixture of EDS,sleep disorder,Mast Cells and night terror from my PTSD 😩 got things done around here and watched a movie with my little dude now early to bed 🛌 and meditation 🧘♀️ in my cosy space with gorgeous essential oils diffusing 💓 #depressionsucks #ehlersdanlossyndrome #myoilylife #doterra #down_our_oily_lane #essentialoils #madeitthroughtheday
got to love the awesome Queensland curls 🙌🏼🙌🏼🙌🏼 brought to you by humidity plus and rain 😘
It's ok to live in both. But important to see yourself as you are - a beautiful light in this world.
Sometimes shining. Sometimes hidden. But always there.
Feeling just a little ready for winter vacation hehe! Only 5 days of work left! Then 2 luxurious weeks of whatever I want. Can't wait! So much work to accomplish before then, but I'll do what I can! Busy busy. This last week has been the worst (lasting) flare I've had in months. I've been pretty much in my wheelchair the entire time since last Monday's therapy appointment. I've never needed to use my chair so much. This will pass. I have my second therapy appointment tomorrow. We are actually supposed to start the CBT activities (last time was just getting to know you questions). I'm hoping that being out and about does not exacerbate my flare as it's just now starting to calm down. Excited to see what CBT has in store! My neuro appt. Friday went well. My migraines have been cut in half with the Topamax. So, next step is upping Sumatriptan dose to try to stop the migraines sooner before they turn into 4 day ordeals. Another good step. I feel like everything is pretty well as managed as it can be. Yet, my body is still an aching, sloppy subluxing mess. Nevertheless, I'm trying to stay hopeful because we are still trying new things and I have doctors who are attempting to help. Plus the amazing support from my husband. AND I'm so close to a well-deserved vacation! 😁
[ID: April, a white female with brown hair in a messy bun, wearing glasses and a light pink sweater is smiling and holding a piece of computer paper that says Countdown to Vacation. There is a picture of a gift box with the numbers two through four in each section and the number one is on the gift bow. There is also a Christmas tree drawn on the paper. Behind April is a white curtain.]
With the new day comes new strength and new thoughts - Eleanor Roosevelt
Things that have happened today (well technically yesterday at this point)
We packed for Texas.
My hair was washed and I took a bath.
Nolan has a baseball game (actually tournament). And in the time I was there I heard the statement “I have mono” from one of his teammates. Ohhhh noooooo, please let this be joke (don’t see how or why it would be) but they all share things in the dugout and hangout together all the time and we all know where this is going if that statement was indeed true.
Also I am very happy to report that I would now consider my arm to be at 90-95% functioning. The rest will come back as I gain muscles back.
And I actually think my foot might be functioning better. Hard to explain as it is still just as floppy as ever and my legs still keep giving out and my walking is still really unsteady. And I really don’t have much better control of it so idk but maybe it is or maybe it isn’t.
Total side not but people in public get really freaked out when I loose my balance or trip. Especially since I have been wearing the neck brace. I mean if I fall with the neck brace on or if I fell before it, I am going to end up in the same place, on the ground.
Even more of a side note, my back seriously sounds like popcorn all day. I probably pop it as much as I used to my neck (now it is 1-4 times a day, just with what tilt and turning I do) and I think I only notice my back as compared to my neck because 1) it is so much louder 2) it takes more effort 3) it actually still kind of hurts when it goes back in (just like everything else as it happens more and more, it hurts less and less)
Also have been thinking a lot about the past and my neck/headache/all the things. But I need to fall asleep because it is now 1 AM so I will talk about that tomorrow or today depending on how you look at things (if I actually remember).
Teaching through play... .
This gosling has hypermobility in his joints but especially in his hands. Here we are playing "Trouble" over the peanut ball to encourage shoulder strength and stability, and hand strength whilst also educating about joint protection at the same time.
Did you know that hypermobility in the finger and thumb joints can lead to difficulties with hand strength and fatigue and so can make handwriting, doing up clothing fasteners or using cutlery, amongst other things, difficult?
Here's to Chantelle 👉 @chantellethongtattoos
, 3 months ago we were lucky enough to meet this amazing women when she came to Upwell. Chantelle suffered chronic pain and fatigue, and hadn't been able to work for 4 months. Most days she couldn't even get out of bed and felt like she had to give up the dream career she had built as an incredibly successful (and famous 🤗) tattoo artist. 💎 And then this happened...👉 ---------------------- From @chantellethongtattoos
So here it is. As most a lot of you know, I have had some health issues the past 6 months. I was in bed for at least 3 months straight, in and out of hospital, having tests done and it seemed that nothing was improving. I was put onto an amazing osteo who recommended @ashleighlani
The best physio in the whole entire world. I ended up with a team supporting me, encouraging positive thinking and being there for me when I would fall. Not getting better was not an option and the best part was, I was going to heal myself with exercise and mindfulness. I have learnt so much throughout this time...patience, self love and even the importance of only giving your time to those who are always there for you. The next chapter is continuing with my program while introducing more work in. I am excited to celebrate each little milestone and get back to all of you who have been patiently waiting. One thing I ask is that I do want to put this behind me and not have to talk about it and relive it. Moving upwards and onwards. Thank you all for your understanding and to my amazing fiancé for being there for me 110% of the time. How lucky I am to be marrying you. @_missmack
💎 👉 Amazing work to our inspiring physio @ashleighlani
who has invested everything into Chan and to @_missmack
and Chantelle's pals for being the most supportive team ever! 👋🤩
Off to the physiotherapist to locate a nerveproblem that makes my fingers and arm go numb from time to time. After that I'm off to do something I thought I wasn't ready for but that feels kind of good and kind of hard at the same time. I'll tell you about that later, right now I want to keep it a secret because I don't want to say anything about something that might not happen. I'm nervous tho! And that's an unfamiliar feeling 😅🙌🏻 #hopingforagoodday
The Velcro on a wrist splint can really make things difficult if you’re a #knitter
. Protect your crafty creations from damage with one of our splint #Kuvrs
KT tape for the win! It's hard to get a picture of it myself, but you can see a bit of it! Hopefully the tape and my pillow nest will keep them in place tonight. Swipe 👉to see my cat. 😍 Can you spot her in the first pic?
I finally finished the pants and top I've been working on for the last few days! I'm planning to wear them together to my first gay wedding next month - which I'm very excited about! (Aside from the location which will be unreasonably hot)
I'm finally starting to get back into crafts and sewing, which is great. The last week has been better for my symptoms because the weather has been cooler, but the hot weather before that was really messing me up.
It turns out that when your blood vessels are stretchy, heat makes that worse and POTS symptoms are exacerbated. Oh, and having the heat relax your muscles is not good when your ligaments are useless. So I've been having a whole lot of dislocations in my large joints.
The cardiologist is pretty convinced that I have secondary POTS as a result of EDS. And my GP is also pretty certain of both of these diagnoses too. I'm still waiting for my genetics appointment, but my GP has told me not to hold my breath on that. She's happy to say that she's confident in this diagnosis unless proven otherwise at a later date.
I'm also being referred to a gastroenterologist because the digestive issues that I developed months ago have really led to a return to disordered eating habits. Not for the purpose of losing weight, but because eating less and eating very specific foods has meant that I can reduce my symptoms. But naturally, this change has led to a dramatic weight loss.
My psychiatrist has also given me the name of a psychologist to contact in order to help work through that.
Lots has been going on in the health realm, I suppose.
I'm starting to adjust mentally though to the whole chronic illness and disability situation though.
I'm starting to socialise a little more, which is a big step for me.
And I'm doing more crafts and keeping myself busy. I'd love to learn how to draw up apparel patterns, so maybe that'll be my next personal mission.
That's about it, folks! If you've read this far, blessed be, I love you. ❤️
community I’m ready to tear up some speaking engagements next year! Contact your Biovarativ rep to book
My story and message evolves every day and I’m ready to change some more lives 🙌🏼💉🙏🏻💪🏻 #HemoLife
Many of our chronic pain and complex musculoskeletal pain patients also complain of cognitive symptoms. 🧠 Concentration difficulties / slow information processing / confusion and poor memory are most often called brain fog. A common experience for those suffering with pain and fatigue conditions. 👉 We suggest you try these strategies to manage this challenging symptom:
🔹Rest adequately to aid recovery (rest your mind as well as your body)
🔹Hydrate before, during and after bouts of stimulation to improve blood volume and therefore blood flow to the brain
🔹Pacing, pacing, pacing (remember to place your focus on one task at a time)
🔹Understand your triggers to reduce and/or modify your load in the future and then engage in a gradual exposure plan
🔹Nutritious, balanced food intake tailored for your needs
🔹Regular mindful practices can help improve concentration capacity
🔹Research shows that whilst you may be slower to complete a cognitive task, cognitive accuracy is no worse than healthy individuals. So be patient with yourself, give yourself the time to use your mind and know that speed is irrelevant to the outcome you can achieve. 🙏