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I need some suggestion

Calling all my fellow #ChronicIllness warriors and #Zebras I require some advice! I love my Fiance to death but he is completely clueless when it comes to understanding chronic illness. I myself am use to having my mother as my caregiver and as she is a nurse and has been caring for me my whole life I have never had to teach her how to help me (we learned together). I have tried just being very honest with him about it but it just kind of seems to go over his head. Being that I'm not a big complainer and symptoms are often "invisible" he seems to think it's no big deal and has the same expectation he would if I was healthy and I can not keep up. Help me help him please!

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To all the zebras with EDS - I support you all!

Being the spouse or loved one to someone with EDS and Chronic Pain is not easy. Please remember that we love you, and can never really know what you are going through, but will try to be supportive in any way we can.

#Zebras #warriors #borrowedspoons   #ChronicPain   #EhlersDanlosSyndrome   #HypermobileEhlers-DanlosSyndrome(hEDS)   #DegenerativeDiscDisease   #SpouseDoesntGetIt   #SpouseSupport

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Playing with procreate

I've been messing with procreate on my tablet a bit more, it's still strang feeling to me, but I think I'm getting the hang of it. I wanted to take a crack at Zebras again and went with a baby one.

##EhlersDanlosSyndrome #hypermobileehlersdanlos #RheumatoidArthritis #Drawing #Zebras

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What questions should I ask the geneticist on first visit to determine /confirm EDS and type. #EDS

Going to the geneticist for the first time and I’m not exactly sure what information is important to share , and what are good questions to ask.
#Genetics #Zebras

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Please reach out to me #CCI #Craniocervicalinstability

Have you been diagnosed with craniocervical instability? I was diagnosed yesterday and I'm so frightened of it all. If anyone has it or has had it I'd really appreciate if you share your experiences and opinions about it with me. It's always easier to cope with something when you know youre not alone. #CCI #Craniocervicalinstability #EDS #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #MyalgicEncephalomyelitis #ME #ChronicFatigueSyndromeampME #ConnectiveTissueDisorder #GeneticDisorders #Zebras #MedicalZebra #CervicalInstability

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Does anyone else give up on Google having an answer to why you’re having certain symptoms because we are too complex for Google to understand?

I’m having really bad tenderness/soreness in some really odd places lately and when I look it up it says things like “the flu” or “mono” or “stress”...yes it said stress 🙄. I obviously can’t look up tenderness/soreness in specific place while having a super rare mitochondrial disease without making Google have a stroke so I’m just giving up on finding an answer and hoping my pain goes away soon. Does anyone else relate? Gotta love being a Zebra...

#MitochondrialDisease #NFS1gene #Soreness #Pain #ChronicIllness #SpoonieProblems #Zebras #CheckInWithMe

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Social distancing can feel isolating

Be safe friends! Ector, the medical alert and response, and psychiatric service dog wants everyone to stay healthy. (Don’t worry this was a used mask, we recycled it!)

Anyone else not sure how you’re gonna make it isolated in your house for all of April. Maine is under shelter-in-place or stay home, and the cops are patrolling the roads. If you’re bored or lonely, or feel lazy or useless, you’re 1)not, and 2) not alone. #Zebras #COVID19 #ServiceDog

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Good Morning #baking #CheckInWithMe #DistractMe

Good Morning Mighty family friends
How are you all today
Because its blooming freezing cold this morning here in the UK
Brrrrrrrrrrrr 🥶🥶🥶🥶🥶🥶🥶
My hands are like blocks of icy

So the shops still had no flour at the weekend and YOU know how much I like my distraction of baking. So my lovely neighbour gave me a bag of her plain normal flour. Yes she popped it on my decking .

So today I'm going to try my hand at making her some cheese scones. If and I say IF they work I'll post a pic later ❤👀😂
An old friend posted me a recipe for scones at the weekend. She bakes and decorates cakes for a living. We stay in contact via fb.
So watch this space

Much love Tj
❤😘🤞🤞🤞🤞🤞⚘🌺🌷🦋🦄 #Love #Hope #Bekind #checkonyourneighbours #RareDiseases #PsoriaticArthritis #SphincterOfOddiDysfunction #TrigeminalNeuralgia #stayathome #Homebaking #Anxiety #PanicAttacks #DepressionAndMentalHealth #WinnieThePooh #EnjoyTheLittleThings #Selflove #Zebras #AutoimmuneDisease

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