thistrippyhippie

pyjama chats, dystonia diaries💗 filmed 28th of june. unfortunately my left hand has gotten worse and is just the way it used to be in 2021 except worse bc if taken out of the splint, dystonia spreads up my entire arm and shoulder. i went to physio today with mum, it took all 3 of us to get my hand back into the splint im wearing at the end of this video. it is so severely contracted atm, along with my trunk dystonia. as always this is for awareness and education so if you have questions please ask away and i’ll do my best to answer!!💚🪴#dystonia #fyp #tourettes #dystoniaawareness #foryou #segmentaldystonia #autoimmunedisease

all very inconvenient🤣 #cervicaldystonia #laterocollis #reality #dystoniaawareness #truncaldystonia #fyp #awareness #dystoniawarrior

Replying to @Meranda Stevens if you’re squeamish this may not be the video for you‼️ this video shows a jaw dislocation and me putting it back in following a dystonia attack, for awareness of dystonia💚 yes, dystonia (especially in someone with extra conditions & hyper mobility) can absolutely break bones, dislocate them, move them, and cause damage. so far i’ve had shrunk tendons, (common in dystonia and long term contractions) dislocated jaw, (multiple times but this was by far the worst) subluxed right collarbone, protruding rib, nerves effected, my right shoulder blade doesn’t work as well as the other, and more that i can’t think of right now. i’m so glad mum was with me as i was really scared to put it back in, it hurt a lot and was so uncomfortable😞i wasn’t sure whether to post this or not but this is from july 13th. #dystonia #dystoniaawareness #dislocation #dislocatedjaw #awareness #segmentaldystonia #fyp #foryou #braininflammation #autoimmunedisease

saw a few people do this and wanted to do my own dystonia version💓🧠 i have a diagnosis of ‘segmental dystonia’ meaning 2 or more connected body parts are effected. for me this is my neck, abdomen and arm/hand. however it can change to ‘generalised’ meaning the whole body is effected, this includes my face, and even muscles you wouldn’t think of like my tongue. dystonia is a neurological disorder that causes involuntary muscle contractions. it’s extremely difficult to manage and yes it is painful! 🧠⚡️i’ve been quiet as i’ve been struggling big time behind the scenes. hoping to be coming out of it soon🤞🏻 i have a more lighthearted funny video coming next🙈 #awareness #dystoniaawareness #segmentaldystonia #dystoniawarrior #braininflammation #autoimmunedisease

some good news for once….❤️🌈✨ for over a year now i have been on treatment for inflammation in my brain and many infections in my blood from a tick bite. and because of this, i am half a year seizure free for the first time since i was 17❤️(i’m 25 next month) this is absolutely huge for me🫶🏻 sadly my body isn’t getting much rest despite this since my dystonia is still so severe, but when that’s better i’ll be unstoppable🙈it is hard to be fully happy about this because of my way my cervical dystonia is but im trying not to let that take away from how huge this milestone is for me🫶🏻❤️ #braininflammation #awareness #autoimmuneseizures #seizureawareness #lymedisease #bartonella #neurologicallymedisease #seizure #autoimmuneencephalitis

The first ever International Day Of Hope couldn’t have come at a more needed time. the world is really overwhelming right now and hope is something we all need. hold onto that💜🫶🏻 @theglobalgoals #BeHope #GlobalGoals #UN #ChooseHope #InternationalDayofHope AD

for 8 years not 1 doctor thought there might be an actual cause for my sudden onset anxiety, psychosis, depression, su!cidal ideation, paralysis, erratic behaviour, chronic seizures, and more, even though i had an amazing childhood with no history of any signs whatsoever of mental illness or neurological issues, and no family history either. nobody thought i could actually have something physical going on that can be found in the blood and treated🩸it’s been a decade now but it was my 8th year of being sick by the time a doctor told me something was actually physically wrong. this is why i am the way i am, why i have so many symptoms, comorbidities, because 8 untreated infections spread throughout my body, and inflamed my brain over the span of 9 years by the time the infections were found 🧠 children, teens, and adults don’t just suddenly become severely mentally ill. for me it was 0-500, sudden and extreme onset of mental illness after mental illness. this doesn’t happen for no reason. i was 14, a successful gymnast, many friends, doing well in school, picture perfect family life. then suddenly out of nowhere i had mental illness. then sudden seizures, daily and crippling. then more and more symptoms. no one knew i had a body full of infections and inflammation🦠🧬 sudden onset psychiatric issues are a red flag 🚩 think PANDAS/PANS, Autoimmune Emcephalitis, lyme disease or bartonella🦠🦟 #awareness #encephalitis #braininflammation #fyp #lymedisease #pandaspans #autoimmuneencephalitis

Replying to @🍭Candy&Ziah💕 i tic every single day, much more than i show on my social media. this is mainly a motor tic attack from a month ago, i don’t share this kind of content much anymore so please be kind💛for tourettes & tourettic OCD awareness, im happy to answer questions☺️💛🧠 #tourettes #OCD #tourettessyndrome #awareness #touretteseducation #dystonia #segmentaldystonia #tourettesawareness #motortics #ticattack

this song🤍👏🏻 life is a bit overwhelming atm with tons of appointments, arranging my next infusion, finding out new medical stuff etc… still trying to get me better. always symptomatic. and the reality of finances as someone in treatment from a less known disease is really hitting lol 💵💰 it upsets me that my friends spend their money on holidays, cars, houses etc and i spend thousands & thousands on pills, medicine, mobility aids, infusions, appointments, travelling for treatment & accommodation while getting treatment etc💉🩸💊none of it would be possible or sustainable without donations & fundraisers, the kindness of strangers, social media & my local community❤️ it’s still not something i’m comfortable with but we were in an impossible situation. i am FINALLY seeing someone about my dystonia tomorrow, i’m in london right now for it. it’s the initial appointment so probably won’t get a ton of answers before the tests but I’m hopeful about this so i’m really hoping its positive🤞🏻 video filmed earlier this week🌿 *i do not give permission for this video to be downloaded and posted. if seen on facebook, it’s stolen and not me* #autoimmuneencephalitis #lymedisease #bartonella #ehrlichia #dystonia #fyp #braininflammation #autoimmunedisease #movementdisorder #warrior #foryou #awareness

not 100% sure when this was😅 found some footage of me with my older brother. he’s had to put up with years & years of tics lol, as you can tell🙈btw this was end of the day, it was pretty late. i was pretty medicated on muscle relaxants when this was filmed. so my neck contractions got calmer for a while & my neck is temporarily straighter. you also can’t see my abdomen dystonia properly when i’m sat down, just clarifying before anyone says anything🙃 *i do not give permission for this to be downloaded and posted on other platforms* #tourettes #tics #motortics #coprolalia #tourettessyndrome #Siblings #fyp #tourettesawareness

don’t know why i never posted this!!🐬🌊💧🪼 #avatar #makeuplook #makeup #facepaint #fyp #foryou

many people don’t realise that tourette’s is UNCOMFORTABLE. to you, you see our tics happening as an outsider. for me, i feel the tics in my body. the tension and ache in my eyebrows, my tourette’s screaming at me to move them, raise them, frown. the uncomfortable feeling in my tongue before i have to stick it out. i can’t describe the feeling very well. tension down my jaw before i have to open my mouth. tourette’s is more than what you can see from the outside!!💜🧠 #tourettes #tourettessyndrome #tourettesawareness #ticloudandproud #advocate #motortics #foryou #fyp #awareness #facialtics

todays picnic was a little different🤣and mums lunch a bit smaller than usual🤭🍅🥒 #fyp #sheep #foryou #uk #brit

mum usually looks at me like ‘😬’ then says something along the lines of ‘you don’t look great’ 🤣 #dystonia #fyp #humor #cervicaldystonia #segmentaldystonia #foryou #dystoniaawareness

Replying to @Rachel✨️ premonitory urges before tics can be super uncomfortable and sometimes upsetting. i hope you learnt something new!💗🧠⚡️ #tourettes #touretteseducation #foryou #facialtics #motortics #tourettessyndrome #tourettesawareness #awareness #tics #ticloudandproud

the best feeling💜🐰🐶🐭🌱 ✨concealer & foundation: @Makeup Revolution ✨blush @W7Makeup ✨purple eyeshadow pigment cream @Superdrug (own brand studio London) ✨highlighter jumbo stick @nyxcosmetics_uk ✨mascara Revolution ✨eyeliner Mina ✨eyeliner detail @Kaleidos Makeup #crueltyfreemakeup #crueltyfreebeauty #trend #foryou #makeup #veganmakeup #crueltyfree #stopanimaltesting #fyp

the very first one caught us off guard🤣 @Peter #fyp #trend #foryou #tourettes #bestfriend

finally got round to editing this GRWM from 4th of May!✨💗💎 as always, all makeup and products used are cruelty free🐰🐶 before there’s any comments, yes i don’t tic, i was obviously having an extremely good tic day☺️possibly due to the muscle relaxants. despite my dystonia and pain, i had an incredible night which i’ll always remember🥰🪩✨@Makeup Revolution #makeup #GRWM #dystonia #segmentaldystonia #makeuplook #concertmakeup #ollymurs #crueltyfreemakeup

ticcy walks, years apart🥰🧠 #tourettes #tourettessyndrome #tics #motortics #vocaltics #tourettesawareness #ticloudandproud #uk

@Olly Murs new song ‘save me’ british sign language cover!! yet another good song and sooo much fun to sign!💗hope you enjoy🤟🏻 (my own interpretation, please do not learn sign language from me, this is a translation) #BSL #signlanguage #britishsignlanguage #ollymurs #foryou #fyp