Today was the first day I lead a support group on campus for neurodivergent people. I was so certain that people weren't going to show up or that I would mess up as a leader but people DID show up & I DIDN'T mess up. It was wonderful, everyone was so ope & honest & I can't wait fir next week. #Autism #ADHD #Support #SupportGroups #NeurologicalDisorder #Neurodiversity
Looking for others experiences here: I was recently told I have a weird autoimmune disease that causes my body to not hold on to my old vaccines and am now having to repeat childhood vaccines. Yesterday afternoon I got a Tdap shot (it’s a combo for tetanus, diphtheria and pertussis/whooping cough) by the time I went to bed my whole lower body waist down was ridiculous sore, like muscle soreness but worse than anything than any workout could do ( and I can’t workout because of all my other illnesses) so much even the blankets hurt and it hurts even to sit on the toilet, I can barely walk, but arm is fine! Has anything like this ever happened to anyone else? #AutoimmuneDisease #Rare disease #NeurologicalDisorder #Tachycardia #GastrointestinalDisorder #bonedisease #maybemito #stillfiguringthingsout #vaccinesideeffects
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“Trust the process” I tell myself.
My mind works exactly as it’s meant to.
My limbs however seem to have a mind of their own.
This disconnect is deeply disturbing,
An old person trapped inside a young body.
I wake up every morning thinking it was all a nightmare.
Then slowly reality settles on my consciousness.
I try to shake it away but my body refuses to move.
Then suddenly a forceful determination emerges from my core,
I can do this. I will fight this.
And slowly I rise.
Softly swaying, proudly beautiful,
I steady myself, I pause a while
And with all the self belief I can gather,
I meet the eye of the storm.
Me no dis day is tricki fore al ob us, jus wantd to say fank u fore bein u ! de speshial uniqu u dat u r , u r brabe ,strong, carin, kind an bein a speshial part ob my jorney !!!💜❤🧡💛💚💙🖤🤍🤎💜🦋 #Anxiety #Agoraphobia #Abuse #CPTSD #ChronicDepression #ChronicHeadaches #ChronicPain #ChronicPain #Disasociativedisorder #Disability #DomesticAbuse #Depression #Emetophobia #EmotionalAbuse #FunctionalNeurologicalDisorder #FearOfAbandonment #fearofjudgement #FearOfVomiting #Gaslighting #ClusterHeadaches #NeurologicalDisorder #PsychologicalAbuse #physicalabuse #Seizures #SuicidalThoughts #SexualAssault
Thank you to those who have read liked & shared my story! ❤️ you can learn more about my journey on my Instagram Phenomenallyautistic #Autism #Autistic #Neurodiversity #ChronicIllness #AutoimmuneDisease #Seizures #NeurologicalDisorder
[Note: For as long as I can recall, my dream was to write novels but my illnesses impact my brain in a way that destroyed all my confidence as a writer. It broke my heart and I abandoned writing altogether... until I was watching Queer Eye (I swear that show is practically therapy) and one of the guys told the lady he was working with that when you hit a road block on the path to your dreams, don't give up; just pivot. I stepped off the road to my novelist dream and pivoted to find poetry. Now I'm back to writing daily, with hope restored and a sense of purpose and fulfillment.]
"Pivot"
When hardships intervene
and stomp on your dream
but you're still determined to live it...
pivot
Find an alternate way forward
Explore paths undiscovered
Be determined, be explicit...
and pivot
And if you once again
allow despair to sink in
don't be your own worst critic...
just pivot
- Remy Soberanes
...
#MightyPoets #NeurologicalDisorder #Dysautonomia #Fibromyaliga #InflammatoryArthritis #hypermobilityspectrumdisorders #BrainFog #MemoryLoss #Aphasia
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Is there a reason it is so much more difficult for me to get the help I need? Just because I am 18 doesn't mean that I don't need me same help!
#MyalgicEncephalomyelitis #ChronicIllness #chronicfatigueawareness #FunctionalNeurologicalDisorder #NeurologicalDisorder #FibroFog #Fibromyaliga #18andchroncallyill
#SeizureDisorder #TicDisorders
I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!
2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
-and-
I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?
I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.
Any wisdom/thoughts you may have are appreciated. Sending good energy to you.
#ChronicInflammatoryDemyelinatingPolyneuropathy
#ChronicInflammatoryDemyelinatingPolyradiculoneuropathy
#GuillainBarreSyndrome
#NeurologicalDisorder
#BurningMouthSyndrome
#Undiagnosed
#UndiagnosedDiseaseNetwork
#UndiagnosedRareDisease
#RareDiseaseDay
I’ve come a long way, from wheelchair, to walker, to cane which I only seem to need in busy or stimulating environments. I’m recovering suicidal psychosis #SuicidalOCD and #NeurologicalDisorder caused by never-treated #LymeDisease
Nine months before I lost control of my body, 10 months before it became difficult to speak, and 15 months before a doctor finally figured out this diagnosis—the first symptom was a horrific psychosis.
For 22 months I’d see non-stop pictures and movies of me ending my life. This was different from suicidal ideation I'd experience as a child and throughout most of my adult life, suicidal thoughts I was able to stop with years of counseling and #EyeMovementDesensitizationAndReprocessing
The only thing—after 22 months—that changed my psychosis from constant, to rhythmic, to often, to periodical, to occasionally, was #ElectroconvulsiveTherapy . Since my ECT, I’ve gone from seeing the images non-stop, to 100 times a day, to 50, to 20, to 10, to 5, to where I’ve been for 3 months which is 0-to-5 times a day.Recently, cooking has become a #Healing hobby, as it continues to be excellent occupational therapy for restrengthing my brain, and fantastic #ExposureTherapy
At first I could only use a knife while my husband was watching. With exposure therapy, I've been trying to teach my brain, and teach me, that I won't hurt myself with the knife, just because I’m seeing it, and certainly not because I’m holding it. This is how I got the pictures down to 5 times a day, then down to 0-to-5 times a day.
I'm cooking so much now, using a knife by myself, that my elbow hurts, especially from mincing garlic. I've come such a long way. #recoveringEveryday has been such a struggle. The mental pain is excruciating. It’s becoming unbearable. My mind is fogged and I have a hard time communicating. I have really no support in any way. I’m tremendously sad and reaching out for some comfort because I don’t know what else to do. I know so many people are struggling too. My heart is with you all and if you are alone, I understand your pain because I feel every bit of it. #Depression #hopeless #Anxiety #Loneliness #AutoimmuneDiseases #NeurologicalDisorder #Loneliness #Pain
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