#livingwithepilepsy💜

[incurableoptimistest1994]

Guess who had a seizure in the shower today? One minute I’m washing myself, next thing I know I’m coming around on the floor with my hip out of the socket 🙃 Can’t say life with epilepsy is boring! #livingwithepilepsy💜 https://www.instagram.com/p/COJX8pnjxVt/?igshid=qpy7hhfs3az

[incurableoptimistest1994]

@jordanlouisaaa you’ll be pleased to know that buying new bras that actually fit my boobs did not get rid of the infamous seizure tit like I thought... They have in fact been biding their time under my many layers this winter, and now the vest tops are out, they’re back baby! Just woke up from a seizure with both tits out and my skirt up round my waist... highly dignified moment I must say 😂! #seizuretit #livingwithepilepsy💜 https://www.instagram.com/p/CNK5IAthO1n/?igshid=1x7m1cbijvh0s

[incurableoptimistest1994]

Had a seizure last night that knocked me for six; had to go to bed. This morning I feel like I’ve been hit by a bus. My brain is still rebooting 🙈😂! But I’m grateful for breakfast in bed, for coffee, for oranges, for dogs, and for my family 💛 #livingwithepilepsy💜 https://www.instagram.com/p/CMwWcOiDmXH/?igshid=ciqm8xy1692c

[incurableoptimistest1994]

Morning after seizure things; - nausea - tiredness - brain fog - headache - light sensitivity - covered in bruises that you have no idea how you got - trying to comb matts and tangles from the back of your hair - everything tastes gone off But I’m still up and ready to do things 💪🏻🥳☀️!! #livingwithepilepsy💜 #morningafterseizurethings. #letsdothis https://www.instagram.com/p/CMCLXd5DlxU/?igshid=cuozb0rmzc9e

[incurableoptimistest1994]

I had a big seizure/spasms tonight. Isn’t it fun I get BOTH at once?! My only saving grace is that since changing my meds I’ve gone from nearly always being aware during my seizures and spasms to usually being completely unaware with very little of any memory of them. It sounds awful, but having experienced being aware, I prefer not to know what my body gets up to during this yucky episodes. Apparently today I nearly broke a finger/my hand, kicked dad in the balls, kicked the dog, and called my mum a fucking bitch 🙈😂 I also wet myself 👍🏻 I’m so grateful for my family’s incredible sense of humour and endless depths of strength. #livingwithepilepsy💜 #palliativecarewarrior https://www.instagram.com/p/CMBCnX2Ds_4/?igshid=14ddipy64z76j

[incurableoptimistest1994]

My mumma really has nerves of steel; today I had an absence seizure whilst we were out running and my body continued walking... towards the road 🙈😳😬 lucky she caught me and I came to before any accidents happened! #livingwithepilepsy💜 https://www.instagram.com/p/CL5BwnYhymY/?igshid=4yfxq46z2bbt

[incurableoptimistest1994]

Had a nasty seizure this morning but I had an excellent response team in mum, Emma and Pippi 💛 #livingwithepilepsy💜 #palliativecarewarrior #myfamilyisthebest❤️ #bestdogever https://www.instagram.com/p/CHvWxASDhYq/?igshid=vkxvznfkg15r

[incurableoptimistest1994]

The best cousins are willing to sit under a table and hold your legs when you have a seizure 😂🥰! @alicemorgan1999 is my hero 🥰💕 #mycousinismyhero #livingwithepilepsy💜 https://www.instagram.com/p/CHhnvoZDgXW/?igshid=168gfuqwysogq

[incurableoptimistest1994]

Seiz(ur)e the day! Had a lush walk along Swansea seafront, despite a seizure 🙈 at least had enough warning to sit on a bench and it was only a mild one. #seizetheday #seizuretheday #livingwithepilepsy💜 https://www.instagram.com/p/CGGJd7oBJp8/?igshid=1yhwwjeq72ov

[incurableoptimistest1994]

“There are so many ways to be brave in this world. Sometimes bravery involves laying down your life for something bigger than yourself, or for someone else. Sometimes it involves giving up everything you have ever known, or everyone you have ever loved, for the sake of something greater. But sometimes it doesn't. Sometimes it is nothing more than gritting your teeth through pain, and the work of every day, the slow walk toward a better life. That is the sort of bravery I must have now.” - @vrothbooks #palliativecarewarrior #chronicpainwarrior #livingwithepilepsy💜 #justkeepgoing https://www.instagram.com/p/CEARgIDjAxt/?igshid=yrp4ls40l0fz

[incurableoptimistest1994]

Chloe, I can honestly say this is the best card I’ve ever received in my entire life 😂😭🥰❤️ #palliativecarewomensupportingpalliativecarewomen #realqueensfixeachotherscrowns👑 #livingwithepilepsy💜 #seizetheday #seizuretheday #myfriendisamazing https://www.instagram.com/p/CD4xyLIjlno/?igshid=10yja9h2wieie

[incurableoptimistest1994]

Had a rough week with horrific and relentless seizures, but today was a good day 💛 I was tired and hurting and grumpy this morning, but I dragged my ass out of bed, got dressed, and walked the dogs with my awesome auntie... and, as you can see, we ended up quite literally dancing in the rain 💃🏻☔️ right there in the middle of Skewen cycle path! We definitely amused and bemused a few passers by, by I like to think we made them smile too. And to be honest, we didn’t care who was watching; we were too busy having fun. Dancing makes me happy. It’s far too easy for me to hate my body; dancing reminds me that this broken body of mine can still do things that bring me joy. I started today feeling so very sad and so very angry about my suffering. I’m ending it grateful for all the beautiful people and things that make enduring that suffering possible and worthwhile. There is far too much light in my world, too much light in ME, to allow the dark to snuff it out. P.s. I’m forever grateful for my partner in crime, my incredible auntie, for being willing to go along with my crazy schemes (I mean, I go along with hers too 🤷🏻‍♀️😂). She’s a light in my life 💚 #dancingintherain☔ #whenlifegivesyouarainydayplayinthepuddles #dontwaitforthestormtopasslearntodanceintherain #palliativecarewarrior #livingwithepilepsy💜 #chronicpainwarrior #keepfuckinggoing #todaywasagoodday #gratefulheart❤️ https://www.instagram.com/p/CD4vomtjqb5/?igshid=q9hl7ctj0k24

[incurableoptimistest1994]

My brain is mush today. #livingwithepilepsy💜 https://www.instagram.com/p/CD1PjgGj7kH/?igshid=1sqy1qznouptn

[incurableoptimistest1994]

My buddies for this afternoon 🥰 Was so hot that I was having massive seizures so our only solution was to literally wheel me in my wheelchair due to the car, dump me in, and drive me round in the car with the air con on full blast 😂 it worked too! We did go to Costa drive through, and because they only had small cups and everyone was so hot and bothered, we just ordered 2 of everything 🤷🏻‍♀️😂! #livingwithepilepsy💜 #palliativecarewarrior #improviseadaptovercome #icedcoffeesolveseverything https://www.instagram.com/p/CDzn0_PDSpK/?igshid=1hb7fu15s8cmy

[incurableoptimistest1994]

I made it ✊🏻💪🏻🙌🏻!! Had a string of really bad seizures this afternoon; as in, oh-shit-are-we-gonna-be-calling-an-ambulance seizures, with some impressive respiratory spasms. Also have a vague recollection of deciding in the brief break between two of the seizures that I NEEDED to get up and go... somewhere? Dunno where! So that was a challenge 🙈😂! The only reason I didn’t have a nice little trip to A&E is because my parents are unflappable badasses who kept their cool and managed things. I’m forever impressed by their strength, humour, kindness, calmness, and grace under such immense pressure... even when my mum makes me wait the post seizure 30 minutes before she’ll give my my ice lolly, that bitch 🙄😂! So despite a strong start this morning, this afternoon wasn’t stellar. But once I’d had a snooze 😴 I perked up enough to go for a much needed walk up Summer hill. These photos were mostly taken to send to my hospice to celebrate that I’m getting over this UTI, but they were also for me, to celebrate finding the courage and strength to do things I love. I had to have lots of stops, lots of ventalin, and my legs and back were hurting, like a lot... but I did it! And it made me happy 😊 I’m also proud as ever of my parents for being brave and letting me go on these adventures despite the risks; they have both always made it very clear that I’m an adult with capacity who can make her own decisions as to what’s a risk worth taking... they also say they raised me to live a life of adventures, and I’m doing just that! But I know sometimes it’s hard, even when they know I’m always with someone and nearby. I love them so much for letting me go adventuring 🧡 And tbh, I’m proud of myself for going adventuring despite the risks. The thing is, EVERYTHING is risky for me, so I have to assess how big a risk it’s worth taking to do something that brings me joy. This was a risk worth taking 💚 #imadeit #palliativecarewarrior #livingwithepilepsy💜 #lifeisfullofrisks #findtheonesworthtaking https://www.instagram.com/p/CDrw0OCjS3h/?igshid=15n96az7m7vv8

[incurableoptimistest1994]

Today I am once again the Queen 👑 of seizures. My brain is currently functioning on another planet or wavelength of reality to everyone else’s, and it’s a slower one 😂 (it’s take me ten minutes to type this guys). Mam says I look like shit today 😂 and I feel like it tbh. Yesterday was a really good day, and I got loads done, but I had three absence seizures at VERY inconvenient times... the first one, in the morning? I fell of the fucking bed 🤦🏻‍♀️ or from my perspective, magically got transported from sitting on my bed putting my shoes on, to being in a very undignified heap on the floor with my entire right side hurting... I have some impressive bruises developing 👍🏻. The second one I was making tea and actually pouring the kettle 😳 and came to with my dad holding onto me so I wouldn’t burn myself 🤦🏻‍♀️, and the third one I was drinking tea (which was apparently quickly removed). Don’t really know where I’m going with this post other than to say that today is one of those days my seizures are exhausting, physically and mentally. I hate it when my brain is all foggy and muddled and I feel like there’s a literal fog or pane of glass between me and the world 🌍 Grateful for my family’s patience and sense of humour (even if they keep coming to find me and check “are you dead?” 😂) and their nerve in the face of constant challenges and anxieties my condition brings them. On the plus side, I was so zoned out and poorly today that I got banned from helping build our newly delivered Ikea sofa 🛋 which tbh I was very glad about when I was chilling with a face mask on and eating an ice lolly and everyone else was yelling at each other and threatening murder and/or divorce 😂 gotta count your blessings! #livingwithepilepsy💜 #palliativecarewarrior #mybrainisexperiencingtechnicaldifficulties https://www.instagram.com/p/CCyxQgEjPcu/?igshid=qi95wh42crv2