Craniocervicalinstability

I have MCAS, EDS, POTS, spinal instabilities, and migraines. It’s not uncommon for me to have trouble walking when I sit up too long or push myself too hard. Usually this feels like fatigue making me clumsy and lightheaded or like my legs being heavy.
Recently, I’ve been noticing new issues with walking. It’s not all the time: once it occurred on Saturday with a migraine (and got worse as I entered more brightly lighted rooms) and once today after eating. My gait has become choppy and I feel off-balance and like my knees are buckling while I walk. If I’ve experienced this before the two incidents recently, I don’t remember it. It’s very disconcerting, although it seems to ease up after several hours at the most.
Have any of you had a similar experience?
(Picture for attention 🙃)
#PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #EhlersDanlosSyndrome #Craniocervicalinstability #SpinalInstability #ChronicMigraines #MastCellActivationDisorder

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

Sometimes you’ve got to take advantage of a flare day to get a lot of knitting done. So delighted that brain fog did not interfere today! 😊 What is your favorite flare-day project/hobby? #Colorwork #Christmasstocking #MCAS #Knittedchristmasstocking #Potsie #EhlersDanlosSyndrome #Craniocervicalinstability #Alantoaxialinstability #flareupdays

When patients walk in for their first appointment with their psychiatrist, they are startled to find that the chick in the wheelchair and neck brace is their nurse. And everyone thinks I had a car accident.

“Oh, no,” I tell them, smiling, “my connective tissue is just wonky and makes my spine and skull unstable. The brace keeps blood flow going to my brain.”

They don’t know the soul-crushing fatigue. They don’t know the nausea, the pain prior to the brace, the lightheadedness, and the feelings that I might faint. They don’t know that there are many days that I get into work and I don’t want to be there. That I would so much rather hide in my room and never come out again. They don’t know that there are many mornings that I wonder how I’m going to get through this day, that I cry and wonder how much longer I can continue doing this job I love. That I wonder who I will be when I no longer can do it. They don’t know how helpless I feel to do anything about it.

“How are you?” coworkers ask.

“I’m vertical,” I tell them. Because sometimes that alone seems too much to ask from my body,

I try to smile and I try to fight through. Most days, I succeed, even if I end up feeling drained by the end of the day and by the weekend.

But I can tell my patients that I understand their battles with FMLA; that I’ve been there. That it’s okay to struggle daily with a chronic condition that medicines might help but won’t cure. That there can be ways to make the world work for our unique needs.

When I tell them, I hope they can take strength from the words. That they can’t see the cracks in my own armor; can’t see my own fears, insecurities, and physical struggles.

I’m often not okay. But I’m vertical. That’s a step in the right direction. #CervicalInstability #MCAS #Stillvertical #Alantoaxialinstability #MedicalZebra #Craniocervicalinstability #Walkingwheelchairuser #LivingWithPOTS #HypermobileTypeEDS