#edsiii

MOST RECENT

I ran out of spoons on Saturday - if you haven’t heard of the phrase “spoons” used other than in reference to cutlery, then bear with me...in Hypermobility and EDS circles, people refer to energy levels as “having spoons” and someone who has to use this terminology due to chronic pain and fatigue, a “spoonie.” I’m not sure if this is only specific to EDS or if it’s for general chronic pain, but the sentiment remains the same. If you do too much and push too hard, you run out of spoons 😕🥄. After a lovely day out, I felt very fatigued and woke up the next day in a lot of pain with my back. Spent the day laid up on the sofa feeling very sorry for myself. I cried some, too 😣😓. It sucks being in constant pain and even more so when nothing seems to alleviate it.
This morning was the same, so I rested up and am now on some stronger meds for a little bit. Saw our chiropractor tonight, too, so I’m hoping that’ll have made a difference!

September is Pain Awareness month, so if you know someone who suffers from chronic pain, spare them a thought and some hugs; if you have chronic pain yourself, then I’m thinking of you - make sure to take care of you and get lots of rest to build up those spoons again!

#ehlersdanlos #EDSIII #chronicpain #painawarenessmonth

251/365 9.9.18 watching the #BaltimoreRavens @ravens beat the Buffalo Bills while also reading and also enjoying the rain. I have created the nectar of the gods after raiding the cupboards. Ran the k-cup over a serving of the chocolate. Not pictured; hazelnut creamer. #hellofall Symptoms are all high, physical and mental, but I am wearing a sweater, a hat, and happy socks, and I have made joy in a cup. So. Wanna come over? I’ll make you one. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #autumn #helloautumn #football #ghiradelli #starbucks☕️ #chocolateandcoffee

It’s becoming a weekly ritual;
Hot bath, rubbishy chick lit book, @deciem peeling mask and @johnfriedauk hair mask.

I hate asking for help but the reality is that I NEED this down time. Not because of constantly being mummy but my pain. Invisible pain- ah the invisible pain. Oh how old me would have eye rolled at this. I woke up so sore all over my body today that it was genuinely tough getting up. I don’t have anyone locally to step in and my husband is crazy busy always. But this snippet of time is to soothe my aches. The book stops me wondering if I’ll be in more pain tomorrow, next month, next year. The face mask makes me look slightly less 🧟‍♀️ and the hair mask makes it easier to shove my hair in to a slightly less frizzy mum bun 🤣. Even people really close to me presume that I’m pretty much o.k. Partly because I have to be, partly because it’s invisible and partly because I think everyone that has chronic pain and fatigue try to hide it pretty well, mostly because I think if we hide it well enough maybe we can hide it from ourselves, even if only for the length of a bath?

242/365 8.31.2018 rough symptoms day. Rough symptoms week. Agitation is a lesser-known (and fun!) symptom of POTS; it’s my body telling me my heart rate is too high. I’m prowling around like a caged wildcat—or, rather, I would be, if my legs weren’t wobbly and in great pain. And all I want to do is clean house. That’s it. I want to do laundry and organize shelves and my body doesn’t work. Not a good week. I wish patience could be prescribed and filled like my meds. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #selfie #painselfie

236/365 8.24.18 Dog-sitting at Mom and Dad’s, enjoying the autumnal weather on the back porch of their log cabin. Pug not shown. Pain’s high today...but so’s the view. ⛰ 🌞 ☁️ #virginia #amherst #amherstva #amherstvirginia #mountains #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

Do you feel trapped inside your body? Pain, fatigue, exhaustion, brain fog, etc. Call me for Free Consultation. Escape the prison. #ChronicPain #chronicillness #invisibledisability #invisibleillness #chronicfatigue #fibromyalgia #edhlersdanlos #edsIII

Living with chronic pain and invisible illness means flare ups will come. Bad days come and go. I'm fighting to get back to the good days. Thank goodness I know my flare ups are few and I will recover. Ask me how I fight back?
#edsIII #chronicpain #piriformissyndrome #sciatica #fibromyalgiaawareness #fibromyalgia #flareup #fightback #nutrigenomicshelpedme #painrelief #naturalhealing #iwillbeatthis #advocate #advocateforyou

223/365 8.11.18 (novice) smoky eyes, wheelchair and all: hitting the road for the first time in months and months to meet my friends at the @alamocville Xanadu Glow-Along. I thought this scarf said “I want to open a disco with Gene Kelly”. #selfie #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #xanadu

Do you feel trapped inside your body?
Pain, fatigue, exhaustion, brain fog, etc.
Call me for Free Consultation. Escape the prison.
#ChronicPain #chronicillness #invisibledisability #invisibleillness #chronicfatigue #fibromyalgia #edhlersdanlos #edsIII #fightfatigue #fightdisease #dianevich

Message me ☎️📱 Long day touring St. Augustine. Thankfully pain free 1+ year now. Sun, heat and long days aren't holding me back. Ask me how?

220/365 8.8.18 Finally decided upon the quote for the wreath at the beginning of my #readingjournal — “People say I make strange choices, but they’re not strange for me. My sickness is that I’m fascinated by human behavior, by what’s underneath the surface, by the worlds inside people.” —Johnny Depp #quotes #quotestagram #johnnydepp #commonplacebook #reading #cursiveismagic #handwriting #doodles #handlettering #fieldnotes #fieldnotesbrand #homebound #chronicillness #chronicpain #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

Not been on the ‘gram much lately. I have a lot to say in my head but I struggle to get it written down. Literally.
The sore hands - as I explained on stories seems to be down to me being hypermobile. Turns out what was pretty cool and helpful in terms of flexibility as a child is pretty painful and at times debilitating as an adult.
Officially I was told it was joint hypermobility syndrome. But there seems to be a lot of debate on how connective tissue disorders are named and classified.
Since I’ve been told, most people have congratulated me ‘that’s great’ - I’m not sure why. Presumably because no one really knows what it is- so that means it’s not that bad. Honestly I’m not sure if it’s good or not. Im glad it appears not to be progressive, more of a wax and wane kind of thing. However; the literature is also not overly promising. I don’t believe I have a complete diagnosis yet- seems I meet most of the criteria for Ehlers Danlos III - some rheumatologists classicist JHS JHeds- aka one and the same. Others regard it as a spectrum disorder. It is not just joint pain though. Lots of bits and bobs that have always been wrong or ‘weird’/‘off’/‘Inexplicable’ have suddenly all been explained.
The only problem is- I’m still in a lot of pain only because it’s not commonly diagnosed or an area with mass interest I’m now left again to carve my own path, fight for myself and work out what to do next. I had a bit of time out but now I’m ready to see what I have to do to get over chronic pain, fatigue, digestive issues, etc etc - but mostly the pain!!! Considerations;
I don’t tolerate NSAIDS so I’ve been prescribed a different anti inflammatory drug (not commonly used due to increased risk of heart failure 🤣) to try.
Back to good old amitriptyline possibly
Physio/OT/Lifestyle changes - such as using my phone a LOT less (hence the point of the post)
I’ve been using a paraffin wax bath courtesy of my mum- it relieves pain temporarily - but long enough to get stuff done! It’s @homedics and was on offer on @amazon for £20 so if you have hand or foot pain deffo consider it!
If anyone has any experience of managing with similar cont in comments

Do you want to fight back against your autoimmune disease? Call me https://squareup.com/appointments/book/8CHHPRPVGNZTZ/diane-s-wellness-miami-fl

You can fight back and win. I didn't think it was possible but I did it and succeeded. Ask me how?

#autoimunewarrior #autoimmunedisease #edhlersdanlos #edsIII #leakygut #fibromyalgiaawareness #invisibledisability #invisibleillness #lupus #biohacking #mindfullness #wellness #chronicfatiguesyndrome

183/365 7.2.365 Tracking my daily average heart rate in my #bujo #fieldnotes black cover large edition. (Keep making them, please, @fieldnotesbrand) My Fitbit tracks my heart rate, and then serves up my daily averages in the app. I closely monitor it, because I have POTS; it’s important to know about sudden low and high spikes, as well as brachycardia (resting rate lower than 60). The orange colored-in bars denote days when my average was brachycardiac. #bujotracking #commonplacebook #planner #trackinghealth #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

181/365 6.30.2018 New glasses have arrived, and I am super pleased with them! Thank you, @warbyparker ❣️ Not only did I receive an incredible pair of bifocals (#noshameinmygame) but someone who cannot afford a pair of glasses will now receive one, thanks to my purchase. Love that business model! I can see my phone without taking off my glasses again! Hooray and huzzah! And I feel so pretty. 💞 #selfie #eyeglasses #eyeglassesselfie #warbyparker #payitforward #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

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