eviemeg🍉

friday 13th of september i had 10 hours in total of cluster tonic clonics, it was over 24 hours before i was responsive again and ended up in hospital a week with daily severe seizures and full body dystonia attacks❤️‍🩹what people don’t talk about is health trauma. today sprung up on me, ‘just’ a day, friday the 13th, but the last one left a mental scar. this video shows the seizures and dystonia yes, but what it doesn’t show is the doctor kneeling down infront of me telling me over and over again he’s bringing the psychiatry team to see me. it doesn’t show the neurologist telling me i shouldn’t be in hospital, i need more fresh air. it doesn’t show them completely disregarding my diagnosis of late stage lyme disease & encephalitis, and refusing to even talk about it or even say those words. it doesn’t show me coming round from a seizure coughing due to feeling a tube at the back of my throat. or the doctor telling me i’m not even having seizures. it doesn’t show the tears and anger on my mums face after being transported to another hospital to talk to a neurologist who was horrible to me. it doesn’t show me arguing with the doctor and saying i don’t need a phsyciatrist and begging him to listen. so so much saddness from that week that has stayed with me, and my mum for that matter. i’m not sure how it’s been 3 months it feels like yesterday 💔 just venting. bit nervous to share but want to use my voice #healthtrauma #gaslighting #medicaltrauma #medicalgaslighting #ptsd #seizures #encephalitis #autoimmunedisease #autoimmuneencephalitis #warrioe #lymedisease #awareness

seizure in town 29th Oct💙this is how we deal with seizures in public, its honestly no biggie to us anymore, we’ve done this for 7 years. i’m happy to answer any questions🩵🧠 #seizureawareness #autoimmuneseizure #lymedisease #encephalitis #awareness #foryou #advocate #braininflammation

2 mins of unedited tourette’s (on a active tic day!) i don’t share my tics as much anymore so here’s some more tic awareness💕 #tourettessyndrome #tourettes #tourettesawareness #tics #fyp

merry christmas to those who celebrate!!🥰have the best time!😁🫶🏻✨#wheelchairdance #dance #polarexpress #christmas #wheelchairuser #lymedisease #autoimmunedisease #christmasdance #christmasoutfit

so i have a dystonic tremor now🙂 it comes in attacks, not constant. but it’s super sudden, no warning, so painful and upsetting😔 on the 14th of December i just randomly started shaking & jerking while my neck muscles were contracting. i thought it was a tic, we only realised what it was by the time i’d had 3 attacks. they’re so painful, especially in my neck which severely contracts and often my jaw & tongue too. i’ve had dystonia for 5 years now but never a tremor like this. i’m trying to film every attack to document them but i might have missed a couple. i’ve had 8 attacks in 10 days now, needing emergency meds every single time. it’s really upsetting me. i’m flaring so my mental state is different and other symptoms are bad too, i’ve noticed it’s mostly Lyme symptoms. always caught off guard when something new pops up😕 #dystonia #dystonictremor #dystoniawarrior #lymedisease #encephalitis #autoimmunedisease #dystoniaawareness #healthdiary #autoimmuneencephalitis

sit next to me & you’re in the danger zone😈 #tourettes #tourettessyndrome #tics @Max And Harvey

my dancing videos look a little different now but that’s okay. i adapted this one to sitting down so if u wanna try it go ahead, it feels good❤️ *ik i’ll get comments so to clarify, i can stand, and i can walk very short distances and around my house, but i need my chair everytime we leave the house. i am having physio and on meds to try help but nothing is working yet* #fyp #wheelchairdance #disabled #autoimmunedisease #lymedisease #bartonella #encephalitis #autoimmuneencephalitis #foryou #positive

editing a youtube video i filmed 2 days ago and realised how much i’m masking these days😕i hope my days get better soon💜#fyp #relatable #masking #MentalHealth #encephalitis #braininflammation #foryou

i’m really proud of how i handled this🤎 after having a rest in a cafe with mum, i got a fruit shoot (don’t judge me i didn’t want anything else🤣) and literally within 15 mins my tics escalated. we know certain drinks do this, such as pepsi max, and certain fanta flavours. this was my first fruit shoot in years so we’ve added another no no drink to the list! my guess is the sweetners. i absolutely love Robinsons, their squash is basically my safe drink. but apparently fruit shoots don’t agree with my immune system. my body was so uncomfortable, horrible discomfort of energy spreading through my limbs and abdominal muscles. this is how i know it was a tic attack, as everyday tics don’t feel like this. it’s been a while since my tics have gotten bad in public so it was difficult, the shop was busy due to it being saturday. but i just let it happen, not like i could stop it anyway. i just let people look, tic loud & proud🤎 thankfully it was pretty short thanks to emergency medication which is a muscle relaxant, the discomfort went away and we continued round the shop☺️ i last minute recorded a bit to show that these things can happen, and anyone could see this in the shops. it’s important to not stare, not make rude comments, and just get on with your day. ask if they need anything if you’d like. the reality of tourette’s is sometimes it plays up when we don’t want it to!🧡✨ #tourettessyndrome #tourettes #autoimmuneencephalitis #tics #PANS #braininflammation #autoimmunedisease #fyp #awareness #foryou

just had do this with Peter🤣 stepped it up a bit 🤣….. @Peter #foryou #fyp #suspecttrend #trend #seizures #disabled #foryoupagе #suspect

that’s my life, that’s my life♥️ #fyp #trend #seizurewarrior #autoimmunedisease #fighter #foryou #awareness #advocate

Replying to @Katey thanks for that😎 #dystonia #dystoniawarrior #dystoniaawareness #autoimmunedisease #whatanoddthingtosay #encephalitis #fyp #foryou

❗️seizures, hospital, fast images & upsetting footage❗️ THIS IS AUTOIMMUNE ENCEPHALITIS. encephalitis is inflammation of the brain, mine is in the basal ganglia🧠 it can cause hundreds and hundreds of symptoms, too many to fit in this video. and with lyme disease, and other infections, it intensifies everything 10X more and it becomes chronic, therefor harder & takes longer to get to remission. forever using my voice & making sure people are aware of this condition and what it can do❤️ #autoimmuneencephalitis #autoimmunedisease #bartonella #lymedisease #fyp #awareness #advocate #seizure #chronicillness #foryou #encephalitis

as requested💓 #jellycat #fyp #jellycattour #jellycatcollection #foryou #bashfulbunny @Jellycat

asked my nail artist for gingerbread nails and she DELIVERED🤎 #nails #christmasnails #gingerbread #nailart #acrylicnails #tics #tourettes #fyp #christmas

i think even one day if i get to remission, my heart will never be like this again —>❤️ it’ll always be like this —> ❤️‍🩹🩹 (i’m okay just wanted to do the trend before it’s passed) #lymedisease #trend #autoimmunedisease #autoimmuneencephalitis #foryou

joining the trend 💕 #fighter #braininflammation #lymedisease #bartonella #encephalitis #autoimmuneencephalitis #fyp #trend

thankfully i haven’t had to do this in like 3 years and won’t be in a hurry to do it again🙈 on another day this might of been no problem, but today my tics became severe after reacting to a drink. but we needed this photo so had to be done!😅🤎 #tourettes #tourettesawareness #tics #tourettessyndrome #PANS #encephalitis #fyp #disabilityadvocate #ticloudandproud

answering some questions about my tics!! will be replying to more on insta (eviemeg) 💛 #tics #tourettes #tourettessyndrome #foryou #PANS #encephalitis #autoimmuneencephalitis #ticsawareness #tourettesawareness #autoimmune

Replying to @.br00tally.honest. good afternoon, this is how i’m starting my day but trying to keep in high spirits♥️ found this comment funny🤣 #dystonictremor #dystoniawarrior #lymedisease #encephalitis #autoimmunedisease #dystoniaawareness #healthdiary #foryou