#ehlersdanlos

MOST RECENT

Regrann from @crohns_spoonie - • Learning how to replace “I’M SORRY” with “THANK YOU.” By shifting our focus from a place of burden with our health, to a place of #gratitude for those around us.
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Not: I’m sorry you have to deal with this.
But: Thank you for supporting me.
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Not: I’m sorry I canceled plans.
But: Thank you for being so understanding.
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Not: I’m sorry I can’t drive/clean/cook for myself.
But: Thank you for helping me.
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Not: I’m sorry it took me so long to do that.
But: Thank you for being patient.
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Not: I’m sorry you have to be here with me.
But: Thank you for keeping me company.
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Not: I’m sorry I didn’t mean to dump on you.
But: Thank you for listening.
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Not: I’m sorry I’ve been distant.
But: Thank you for reaching out.
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I’m definitely guilty of saying ‘sorry’ more than I should. But I’m trying to be more aware of my word choices. • There’s a difference between being sorry someone has to ride this crazy #chronicallyill rollercoaster with you. And saying sorry like you’re assuming all fault. • Being sick is not your fault. The tough situations your health puts you and the people around you in, is not your fault. • If you could change the circumstances you would. But what you can begin to change is the dialogue around them.
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#truth #countyourblessings #attitudeforgratitude
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#chronicillness #thestruggleisreal #ehlersdanlos #nevergiveup #autoimmunedisease #crohnsdisease #ostomy #spoonie #nocolonstillrollin #autoimmune #mood #IBD #quote #inflammatoryboweldisease #EDS #dysautonomia #mentalhealth #crohns #crohnsandcolitis #fibromyalgia #invisibledisease #chronicpain #invisibleillness #quoteoftheday #posturalorthostatictachycardiasyndrome 📷:Pinterest

After yesterday, the last thing I wanted to do was workout this morning. I was still sad and upset and my new medication had many unpleasant side effects such as fatigue, tremors, and loss of coordination.
Needless to say the workout this morning was tough. There is a part in the video where you can see me stumble and loose balance a bit. Thus, the fun begins!
Here’s the upside. Working out is one of the best things you can do for your body when you’re chronically ill like me. Keeping your body moving and healthy, makes it easier on your joints in the long run. These workouts only take 30 minutes a day, at home! They are easy on your joints too which is why I love this program!
Want to join my tribe and do these workouts too?
Message me or click the link in my bio!
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#nannybaby #lifestylechange #elementaryeducation #celiacdisease #celiac #sjogrens #sjogrenswarrior #sjogrenssyndrome #iowa #eds #ehlersdanlossyndrome #ehlersdanlos #potssyndrome #autoimmunedisease #alwayssick #chronicpain #chronicillness #nannylife #nannyprobs #kidatheart #lifestylechange #dogmom #outdoorgirl

Had a great birthday yesterday with the two awesome guys!
#nationalaquarium #baltimore #ehlersdanlos #ehlersdanlossyndrome #chronicillness #spoonie

I have been wanting to discuss my PTSD for awhile now, but I have not been able to write it out. My PTSD stems from the mistreatment of the medical community. One doctor and one NP in particuliar really effected me mentally. For months I would have nightmares and flashbacks to those moments I shared with each of them. There actions mentally completely broke me down. My anger and depression was rising. I was afraid of what I thought I could be capable of, so I decided to go to therapy. I was honest...brutally honest about the thoughts of anger, the visions, the nightmares. I was then diagnosed with PTSD after meeting 13 of the diagnosis criterias. I also was diagnosed with a dysfunctional thought record. I saw my therapist 2x each week for 4 months to work through this. I no longer have nightmares or visions for the most part and my anger has subsided. The panic attacks and anxiety attacks have also been put into check. I also learned how to separate my rational thoughts from the irrational ones my pain was causing. I want to share this with you in hopes to help one person out there. PTSD can absolutely happen due to the mistreatment of medical professionals. I am choosing as of now not to share those exact situations as it may be triggering for myself and others. But if this is happening to you.. You are not alone! Ask for help! It was the best thing I did. For a long time I thought I was going crazy and was afraid of my own anger and thoughts. I was never crazy! You can get help and work through it. I promise you. .
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#ptsd #mentalhealth #spoonielife #ehlersdanlos #heds #ehlersdanlossyndrome #chronicbackpain #chronicpain #legalizemedicalmarijuana #weedismedicine #marijuanamovement #nevadabound #medicalrefugee #invisibleillness #doilooksick #risingzebra #gofundmeinbio

40yo in 4mo - my personal challenge for myself. I’ve shared a bit about my idea/self-directed program on FB, but I still need to write down an overview of what I see in my head. My focus is not on what I eat and how much I “workout.” IMO - nutrition and daily movement are understood and are part of the core foundation of any wellness and well-being improvement program. My focus is also not weight loss or weight in general, although it may be for others. The point is to focus on behavior modifications and lifestyle changes that foster long-term habits, which will also help meet your goals and “wellness” vision. We all have to determine what motivates us more than skin deep and to establish self-efficacy - independent of a belonging to a gym, being able to go to your favorite class or studio, having a specific program to follow, or challenge group to motivate you. However, most of us need a little help, motivation, encouragement and information on how to get started the majority of the time - life is tough and exhausting. And way too stressful. Most importantly, it’s critical that we all plan for and learn how to equip our bodies and minds with the tools to find the drive and resolve to dig deep - especially when all short-term goals have been checked, or if/when we find ourselves gripping rock bottom and cannot comprehend how to start climbing out. Anyone who wants to join me is welcome! From Day 1 (yesterday): - Power Yoga Workout by @heartalchemyyoga with my husband on the deck overlooking the bay and while listening to our littles screaming in the pool next to us - https://youtu.be/3YhPqqMfPu0 - Started my audio book - ‘The Last Best Cure Part 1: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life’ by Donna Jackson Nakazawa, narrated by Karen Saltus - https://www.audible.com/pd?asin=B00BL6G8XU&source_code=ASSORAP0511160006 - Worked, or attempted do. Tried to accomplish short-term tasks that have been waiting way too long to be completed. Didn’t get far other than pure frustration. - Started to visualize & verbalize my long-term goals for my 4mo personal challenge. Still need to write down.

EDS awareness tees. £8 for kids, £10 for adults +p&p check out my Facebook shop on my bio. #edswarrior #zebra #hypermobity #awareness #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #spectrumcraftsshop #customtees #stevenage

Today, I received my #beadsofstrength Each one of these beads represents a part of myself, and a great portion of which I keep to myself, namely my chronic illnesses and the struggles that comes with it. Numerous tests, surgery, chronic pain, depression, and so much more. Each bead also represents a victory. It shows that even with all the struggles that comes with a chronic illness, I still pushed through, and I’m still here today, going on #zebrastrong Even if nobody can see what I’m going through, I have these beads as my own visual, to remind me that I am valid, it’s not all in my head, and that I can get through all of this. Thank you, @beadsofstrength for doing this amazing project, helping out tons of spoonies like me 💕

Today I've slept, went on a little walk, I was out with the trash and all the cartons I should have taken out for over a week ago and cleanse both my face and the sofa as I'm getting a new one and put this out for give away and played Donkey Kong on Nintendo switch. Now I'm going to play Skyrim 😎 #donealottoday

FOR SALE - DM ME
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Bracelets are $2 a piece. Large stickers are $4, medium sized stickers are $3, small stickers are $2, and the mini stickers come in a set for $1. The larger art piece is approximately the size of a postcard and is $10, and the smaller piece is exactly half the size and costs $5. Shipping is 50¢ to cover the cost of stamps. DM if you’re interested in purchasing anything!! I’ll be making more very soon and will start on patches once I have the proper supplies. If there’s anything you’d like to see on a sticker or a patch, or any colors you’d like to see in a bracelet feel free to let me know and I’d be happy to make something for you!!The money from each purchase will help me pay for medications, copays, and other costs of living as a chronically ill person who is struggling to make ends meet. ..
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#artistsoninstagram #crafts #crafting #diy #bracelet #art #stickers #forsale #chronicillness #ehlersdanlos #ehlersdanlossyndrome #pots #potssyndrome #gastropareis

I'm majorly flaring from pushing myself the last month or so which means finding things to occupy my time in bed. I ordered some sample sizes from @w3llpeople and so decided to play with makeup again today. Still figuring out this hooded eye thing but I think my middle school emo self would appreciate this upgraded raccoon eye. I used @w3llpeople bio-tint moisturizer in light, bio-correct concealer in light, narcissist foundation stick in fair golden, and the natural contour and highlight duo. I also used my baeblu natural cheek tint, @skyorganics.us tinted lip balms in raisin and shimmer, supernova eyeshadow palette by @bhcosmetics, naturally rooted mascara, zuzu liquid eyeliner in raven, etude house drawing eye brow, and @innisfreeusa mineral powder. Not bad for my second time applying makeup this year.
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Feeling exactly how I felt last summer when I was taken off my IV fluids. I'm dehydrated, dizzy, blacking out very easily, falling, getting multiple daily migraines, in a lot of extra pain, and just so exhausted. I napped most of yesterday which is highly unusual for me. But I'm also barely getting any sleep, just tossing and turning all night. Summer is the worst for me. I miss my fluids so much. They gave me a level of independence I can't achieve any other way.
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#spoonie #spoonielife #chronicallyill #chronicillness #POTs #potsie #eds #edszebra #ehlersdanlos #ehlersdanlossyndrome #chronicpain #ehlersdanlostype3 #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #hypermobility #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #gastroparesis #dysautonomia #madeupmakeup

✨I tried using KT tape to keep my left shoulder in place. Damn skin won’t let it stick to me (thanks EDS) I guess I need a new shoulder brace.. but what does that look like? Hmmm, anyone here have a chronically dislocating shoulder? Or maybe know a wizard who could make my body produce collagen the right way?! No?? Okay, I’ll settle for some coffee. Good morning ☕️ •
#chronicillness #chronicpain #fibromyalgia #fibro #eds #heds #ehlersdanlossyndrome #ehlersdanlos #hypermobileeds #pots #hypotension #dysautonomia #mcad #mcas #mastcell #mastcellactivationdisorder #spoonie #zebra #zebrastrong

Looking for TMJD solutions, bc mind is just terrible lately. Came across this from a local ish orthodontist and felt it worth sharing. I know a lot of EDS/HSD people have TMJ problems! (image description in comments)

#tmj #tmjd #TempomandibularJointDisorder #ChronicPain #ChronicIllness #EhlersDanlos #EhlersDanlosSyndrome #EDS #hypermobility #HSD #HypermobilitySpectrumDisorders

LITTLE GAINS, A LOT OF PAIN... This is the look (and attitude) I shot my personal trainer’s way (with my sweaty, puffy, pouty face) at today’s session.
I’ve had a few setbacks with neuropathic pain in recent weeks which has landed me balls deep in struggle town.
Again.
Though it’s a place I’m familiar with it has been frustrating AF, so, like any grown up person, I made that known in a mature fashion.
Lulz.
Nope.
It was more a ‘throw my toys’ & stamp my feet kind of way... because “my buns, they don’t feel nothin’ like steel, Cher.”
Physical rehabilitation can feel like two steps forwards & three steps back & it’s hard to keep your chin up. I manage to catch a glimpse of my life returning to some kind of normalcy, like a mirage in the middle of the chronic illness desert, only to then feel as though I’ve stepped in chronic pain quicksand.
Swallowed whole.
And so, my ever patient trainer let me have my little petulant child moment then gently reminded me that I have come a long way. That every stage of recovery & rehabilitation will present a new challenge.
So, in fact, my setbacks are just signs that I’m breaking new ground with my progress. As frustratingly slow as it is, my measured-in-millimeters progress, is still far better than where I used to be.
He urged me to pull myself up by the bootstraps, push through the pain & just keep going.
It’s never easy.
And, to be fair, we have been training together for 5 years & this is one of a few times I’ve cracked it & briefly felt like giving up following a set back. Or rather, one of a few times I’ve actually shown it (I’m usually a poker face when it comes to physical pain).
Though my buns may not be like steel, my mind has to be. Each & every session hurts... a lot.
Not only in the “normal” way (tired, sore & burning muscles) but also in the EDS way (joint pain & neuropathy). But you’ve got to keep on moving forward, even when it gets hard & painful.
And one day, when you look up, your trainer will point out those sweet, sweet micro gainz... and you officially become a douchey gym-bro who says things like #gainz.
(Ugh as if, no one should ever say that word: ever).
💪💪💪💪💪💪💪💪💪💪💪

Hey la Team bon #instagram à décider de beuguer complet depuis une semaine et y'en à mare.
J'ai tenter de vous partager en story le compte que j'ai créé pour harley mais ça n'a pas marché.
Retrouvé l'actualité et l'évolution de Miss Harley sur @harley_staffy (quand insta aura décider que je peux enfin changer de compte...)
Bonne soirée mes Gambas 🦐

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