thistrippyhippie

hi, thought i’d actually take some time to explain what’s going on and why i’m a bit quiet. content warning for possibly upsetting images/footage, dystonia, and talk of subluxation (partial dislocation) incase anyone is squeamish. thank you to those sticking around and staying active, appreciate you🩷 #dystonia #dystoniawarrior #awareness #MentalHealth #cervicaldystonia #braininflammation #autoimmuneencephalitis #fyp #advocate

If you're looking for a sign to start posting on YouTube, this is it. These are just some of my YouTube highlights, and I know there’s more to come ❤️ which of these do you remember? 🥰#ad #makeitonyoutube

yep, still ticcing away everyday no matter what it may look like online💗my most common tics atm are the notification whistle, and ‘shut up’🙈 i’m sorry for not posting, i’ll do a chatty catch up soon🩷 there’s a lot going on #tics #tourettes #tourettessyndrome #autoimmunetics #awareness #fyp #motortics #complexmotortics #vocaltics

a day with cervical dystonia💙 people wondering ‘why isn’t she replying, why isn’t she posting, why isn’t she working’ meanwhile me: 😅 this is just one day, less than 24 hours. i randomly realised one day how much my dystonia fluxuates throughout the day, changing, spreading. so i had an idea to record every time in the day the contractions started. (i’m contracted 24/7 with a head tilt and cervical curve but contractions worsen when in episodes. e.g my neck muscles and veins pop out when more intense contractions are happening) 💪🏼i’m going to show this to my physio but also thought i’d share publicly. for awareness on a condition 6 years ago i thought i knew everything about. here i am now at 24 and its so much more than i ever thought or acknowledged🤣🙈 i’m sharing because i haven’t found anyone like me. i have cervical dystonia online friends, all of us struggling in our own different but similar ways. but none that look like me. and i’ve been looking at google images, looking at #cervicaldystonia hashtags, anywhere i can to find a photo or video of someone who is curved and twisted in the shape i am due to dystonia. (it looks like scoliosis but it’s not) so if i saw this video 3 months ago, i wouldn’t have felt so insane, and felt so much less alone than i do right now💙 cervical dystonia warriors, i see your struggle & we should be applauded bc this shit is absolute physical torture. we are f*ckin bad ass💪🏼💙 *please no negative comments on my body, it’s going through a lot lol* #dystoniaawareness #fyp #movementdisorder #cervicaldystonia #dystoniawarrior #foryou #encephalitis #lymedisease #ehrlichia

rabbit people will know how rare this is. my current 3 would never allow me to do this, my 2 girls don’t even let me touch them. Bonnie would absolutely savour every moment like this. she loved it, the more contact, the more kisses, the better🩷 she was more than a rabbit, she was like my second dog. my soulmate bunny🥰i am still so angry she was taken from me when i wanted so much longer with her. my beautiful big girl🤎this was heaven for me and i’d do anything to experience this feeling again🩷✨ #trend #trending #frenchloprabbit #frenchlop #fyp #foryou #giantrabbit #petloss #petgrief

getting ready for the day as someone with a illness can look a little different to other people’s routines. we can’t always shower and that’s okay. if people don’t understand then let them judge cos they’re the lucky ones😅it’s okay to adapt your routine🩷i’m having a bath tonight where i’ll soak my muscles and wash my hair but first thing in the morning it requires too much effort (sometimes just holding my arms up washing my hair is painful and exhausting) so this is what i did for today🩷🌸 this isn’t an ad but highly recommend @FreshWipesUK ! (they were gifted to me but this video is all me, not asked by them) they’ve made such a difference already. amazing especially for those in hospital. lots of love💜 #dystonia #grwm #chronicillness #disabled #movementdisorder #cervicaldystonia #fyp #foryou #MentalHealth #dystoniawarrior

deep breaths🤍🌿🌞 #MentalHealth #lifeisworthliving #fyp #foryou #chronicillness #cervicaldystonia #foryoupage #mentalhealthmatters

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

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

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

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

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

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