Creative, Sick & Dreaming β™‘

Taking photos to look back on the good stuff when I'm too sick to make new memories My blog :) πŸ‘‡

"I'm on holiday. It doesn't always feel like it... We all take more than just our favourite clothes on holiday with us [as lots of things we are struggling with at home can not be left behind]. Often the disparity between what we expect of our picture postcard weeks away and what we actually get causes a bucket load of stress that really doesn't help with that whole desire for perfection thing we have going on in our heads..." A couple of lines from my new blog post about how certain things - including mental and physical health problems - come along with you on holiday whether they are invited or not. ~ Photo description: I'm on my bed with lots of pillows, my oxygen tube and a striped top. (One of those rare occasions when I was actually enjoying a rest rather than needing to be forced into it!) ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #SpoonieBlog
A little past their best by the time I gave in to pressing these petals! But I'll still have the memories of them as gorgeous flowers no matter how these turn out. And no I can't read German (it's not actually German, which highlights the extent of my German knowledge), it was the heaviest book in a charity shop so best for the job! Hope you're all either enjoying or surviving the heat if you're in England (I'm surviving around mid day then enjoying the evenings!) β™‘ ~ Photo description: Petals laying in a book which is in turn laying on a blue quilt cover! ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #Memories #PressingFlowers
The last week has been such a mix. I had my 2nd migraine (months since my 1st, thankfully) and have been stressed (even after making my new life goal "be a serene flower fairy queen") but good things have happened too from meeting the loveliest of people, having pretty hair for a few days (kept this style in for 4...) and seeing @lifeofpippa making younger users of power chairs/scooters more visible through her blog (which you can find linked in her bio) πŸ’— As well as listening to the @watch_read_listen podcast co-hosted by official #BabeWithAMobilityAid @littlepineneedle. Ahh the wonders of the internet (And duck ponds, can't forget the ducks). ~ Photo description: Photo taken from behind of me sitting on my tiny blue and black mobility scooter in front of a calm duck pond with trees and a pavement which is cracking because of their roots... I'm wearing a full skirted red and white gingham dress with a blue-green cardigan that has sequins across the shoulders and my hair is up (plaits around my head) flip that was a long description! ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #Tranquil #CollectifClothing #1950sStyle #DisabledAndCute
I've been going out too much recently and yet... Not enough. A misconception about chronically ill people is that we have a lot of free time. Yes, we have a lot of time but we are never free from illness. Our time is bound up in rest, medications, surviving. πŸ’œ I have so much time but such little useable time. ~ Photo description: My lilac bag and a disposable (evil disposables, forgot the reusable; oops!) Coffee cup sitting on the front seat of a car with a calm sort of creamy interior. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub
Catching up on all the things I couldn't do during exam time (apppintments, sorting clothes and in the case of this photo: spending time with very important people... Who aren't pictured because they happen to be 95 years old and I don't fancy introducing them to Instagram with all the joyus confusion that would entail) means that I don't feel quite so rested and free as I had anticipated at this point! However it has been an age since I posted a #BabeWithAMobilityAid photo and I've never shared a full picture of this dress (shock! The horror of it!) So thought that'd be a nice way to cheer up the day while I recover from yesterday's outing! ~ Photo description: Picture taken in mirror (which is surrounded by clothes and scarves and all sorts... Including nighties behind me... Pink lacey ones but not the flimsy "comes with thong" kind. More the "think Nanny would like this for her birthday?" / "oooh Sakara shame this doesn't come in your size" kind. I'm sitting in my wheelchair wearing a summer hat, cropped pink cardigan and a polka dot full skirted dress which I bought in a Wood Green animal shelter charity shop! It's from the 1980s in a '50s style. I've got frilly socks on under my pink converse and no I'm not wearing off white tights I'm just that pale (honestly I looked at this photo and thought "Oh! I didn't think I put tights on yesterday! Wait never mind that's just me.") P.S. also, desire to post babe with a mobility aid photo was turned up a notch by watching @jessicaoutofthecloset 's video where she based a "LookBook" around the tag created by @littlepineneedle which was like two of my favourite corners of the internet squishing together for a mo. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #WhereTheTiredGirlsAre #Vintage #80sDoes50s #1950sStyle #1980sStyle #TrueVintageOOTD
Hi everyone! First things first I'm on oxygen β™‘ I really want to say "nothing serious" but chronic illness is serious so instead I'll say nothing immediately terrifying, don't worry :) It's part of a treatment to try and help me. So far according to numbers and tests there have been improvements. I'm not up to writing about it in detail at the moment but before I was breathing almost 2X as much as I should be. Now it's "normal". I still feel just as bad, sometimes worse, the chest pain is gone which is amazing but other than that my quality of life is the same/worse and there's no way I'm going to be anything but sick for the foreseeable future! However there is hope and I wish never to underestimate that. I have a lot of complex emotions surrounding sharing this as it's not an NHS treatment (no I'm not secretly a millionaire!) But I keep thinking of things I want to say or photos I want to share which I can't because my oxygen tube is in them so have decided to go for it. This photo is for #TheVintageSewingChallenge (organised by @iliveinmylab , @Shopmakethislook and @wearinghistory ) as these are some of my favourite fabrics that I have hoarded for when I am up to or able to prioritise sewing (which I'm hoping I might be able to sometime this summer because I won't be using all my strength for school work!) ~ Photo description: I'm holding a bundle of pastel fabrics of which the pale pink gingham and lilac polca dots are my favourites, I'm smiling and have a thing I've forgotten the name of on. It's a tube for oxygen anyway (I do know the name... Brain fog, anyone?) ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #Sewing #PastelAesthetic #StuffThatHelps
Revision days, be gone! Sending so much love to anyone still going through this or who is trying to recover from it (just when you think it's over then realise you're still wacked out from everything, eek!). The dress you can see in this photo is an "80s does 50s" vintage one we found in a charity shop (went there especially as they had a vintage section!). I loved it anyway but since my white petticoat arrived (of course I haven't started collecting them...) It's taken it to another level (as well as it taking up an extra seat). Never thought I'd feel so relaxed in something flouncy. It's like wearing a light and fluffy quilt cover (only flattering) ~ Photo description: Photo from a few days ago showing my laptop, notebook and headphones on my bed. My skirt is spilling over the keyboard because who needs to type when you can look like a puff ball? The skirt of the dress has ribbons edging the tiers and a purple and pink polka dot pattern on white. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #80sdoes50s #VintageStyle #ALevels #StudyAesthetic
Beautiful roses blooming today (they came out specially to congratulate me on surviving my exams). I have to keep reminding myself this doesn't mean complete "freedom" and I still have to rest and recover but honestly I'm so excited to be able to think about writing blog posts without feeling guilty!!! ~ Photo description: beautiful peachy pink roses with a blue sky and green hedge behind! ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #Roses #June #Sunshine #AlevelExams #CloudWatching
Petticoat: Bought for fancy dress (see last post), Dress: "Worn once for a singing competition" -eBay description, Tights: Tesco school uniform section. Me: Seems appropriate attire for bed rest. I know #TheVintageFashionChallenge is over but this really should have been my post for #MeInANutshell Hope you're all baring up okay β™‘ ~ Photo description: Close up of my feet on the bed sticking out from under a floofy mass of red floof (petticoat) and a navy blue dress with a novelty print of ladies and dresses on it. I must add at this point that this is not my usual bed-rest attire. It's a treat. (My joggers are just so lovely and fleecy I can't abandon them for all the pretty in the world some (read: "most") days) ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #RetroStyle #CollectifClothing #HellBunny #PinUp #LayingButSlaying #WhereTheTiredGirlsAre #SelfCare
Swishy Sakara! Appreciation post for kind people: My friend's mum had this petticoat and bolero from a costume party and (after I told her excitedly how dreams of floofy dresses and petticoats were getting me through exam season) she GAVE BOTH OF THEM TO ME. Which absolutely made my day/week/month. This is a photo I took to show her them together with my dress (in my garden... Hence the bare foot...) πŸ’™ This can't make me better. Can't make my exam related headache and shakey episodes stop. Can't be guaranteed to get me through my next exam without crying in my rest breaks but it can make me smile right now and that is the most wonderful thing. ❀ There were other kind things/people I wanted to mention but I'll go through them after exams. Bring on Friday. ~ Photo description: I'm floofing about in a full skirted dress. With red cardigan and petticoat. The dress is blue with a novelty print of 50s ladies and clothes. I'm standing in front of hedges and things. This is the best description my brain can come up with right now so over and out! ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #CollectifClothing #VintageStyle #Retro #Petticoat #StuffThatHelps #ExamSeason #LittleActsOfKindness
Exams start tomorrow for me and I haven't been well enough to keep on top of things the way I like so not sure how this is going to go... If I'm not around for the next two weeks I'm examing and sleeping πŸ’• If I'm around rather a lot it's probably because I need some stress relief... Not sure which way it's going to go but thought I'd give you a warning ;) And a nice photo of my (sadly departed) Β£1 tulips who brought me so much joy for about 3 days (they did so well!) πŸ’šx ~ Photo description: covered it in the main caption- tulips! They're a mix of purple, yellow, red and lovely peachy red ones with yellow edges. It's a close up of the flower heads with my window behind (You can see the top of a tree and white sky through the window) ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #Flowers #Tulips #ExamSeason #ALevels #ALevelPsychology #ALevelEnglishLanguage
"Beautiful Places" is now linked in my bio! "What is Beautiful Places?" I sense you typing! It's a song I wrote & recorded (a video from my phone, don't be getting any fancy studio ideas!) And have been longing to share for some time. If you're unable to listen, I've also written up the lyrics in the same blog post so it's all in one place along with a little about how & why I wrote the song. Hope you enjoy it if you are able to (and of course if it is your kind of thing) πŸ’›πŸŒΌπŸ‘Έ ~ Photo description: I'm sitting in a field of rapeseed/ yellow flowers but you can only just see them in the background as I'm actually in an area of long grass! I'm wearing a lacey top and long green skirt. Also the elf-princess side of me features again with the little gold "circlet". I'm fiddling with a piece of grass. And I am of course wearing my specially certified elf-princess converse high tops in khaki green πŸ’š ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #SingerSongWriter #NewSong #ButYouDontLookSick
Making the most of all the plants that have come back to life now it's spring! (Especially the grass... Never enough grass...) πŸ‡πŸŒΌ @chronicallycreate shares things about / made by creative spoonies and is running a competition/giveaway for May where you have to take a photo including the letters "CC" somehow! The prize is a copy of @emilycoxhead 's @thehappynewspaper ! ☺ Anyone who's chronically ill can enter until the 31st of May β™‘ This is my entry with the Cs being the little black lines on the edge of my Converse (or maybe it's 2 Cs as in the two Cuties I was serving at the time hehe) ~ Photo description: Talked about in the rest of the caption but it's a photo from above of my two bunnies (one brown, one white) sharing a pile of grass. You can see my patterned maxi skirt (mostly red, orange and green) and the toes of my green Converse shoes! ~ ~ ~ #spoonie #ChronicIllness #invisibleillness #sickchick #MEcfs #meAwareness #spoonieBlog #hypermobility #chronicPain #ChronicLoveClub #StuffThatHelps #VintageFashion #bunnies
Sometimes Sakara pretends to be a royal elf. Fancy circlet and all (okay it's a headband my mum found on ebay. The listing: "for a wedding" Me: "So basically everyday wear then."). And yes that's a faux-fur coat... In May...* ~ Photo description: I'm sitting in my wheelchair with a pretty cream brolly and a furry coat on my lap wearing a lacey top and green skirt. Also sunglasses that look too big for me (don't tell anyone they'll never notice) You can see grass in the background and a hedge (So exciting I just had to mention it in this description.) It's a lovely naturey green though! * I bought it (the coat) this month at @worththeweightvintage so really you expect me to wait until winter to wear it? I also got the skirt there!... I bought... A lot. ~ ~ ~ #spoonie #chronicillness #invisibleillness #SickChick #mecfs #MEAwareness #SpoonieBlog #hypermobility #chronicpain #WheelchairFashion #VintageFashion #ChronicLoveClub #DisabledAndCute #BabeWithAMobilityAid
Studying in the garden makes me feel so much calmer, like the next half an hour is an eternity and I have more than enough time to catch up on all the areas in which my knowledge is beyond lacking! I'm so glad I'm able to be out here and hope that wherever you are (literally and health-wise) you are able to find some calm somehow. That doesn't mean the feeling lasts, trust me I'm FREKING OUT where have the weeks gone??? More time please! Make A levels a 3 year course! ~ Photo description: language society and power book resting on some sunny grass with a daisy (pretty flowers beat manicured lawn any day he he he) ~ ~ ~ #spoonie #chronicillness #invisibleillness #sickchick #mecfs #meawareness #spoonieblog #hypermobility #chronicpain #alevels #studying #stuffthathelps #ChronicLoveClub
Bring me sunshine πŸŒžβ™‘ I love this parasol although it doesn't give a very large area of shade, it's such a pretty frame to see the world through when I am holding it! Today's prompt in #TheVintageFashionChallenge is "necessities" and umbrellas are well in that category for me! I generally forget to use them or find carting them around folded up too much hassle for the few minutes of actually using them but this year they've come in handy for wheelchair-walks with my mum on sunny days. Often putting a jacket or cardigan over a nice dress feels like spoiling it for me but an umbrella or parasol just adds to the outfit while protecting my (pale and freckly...) skin from the sun! Scarves used as lightweight shawls also help for covering my arms. 🌞🌻 Hoping to write a blog post to accompany the set of photos this is from... Aim of my outfit: Feel Like A Fairy βœ…πŸ‘Έ ~ Photo description: Sakara in front of a field of yellow flowering rapeseed with partly blue but cloudy sky in the background wearing a pink puffy dress with lacey overlay and holding a pretty parasol. (Basically just imagine a fairy with a fairy umbrella wearing a nice fairy dress and standing in a fairy field and you'll know what I'm getting at) ~ ~ ~ #spoonie #chronicillness #invisibleillness #sickchick #mecfs #meawareness #spoonieblog #hypermobility #chronicpain #faries #faryfashion #whynot #ChronicLoveClub #spring #rapeseed #truevintage #parasol #chichilondon #butyoudontlooksick
My name is Sakara. I am 17 years old, living with M.E. since I was 5. I have been missing from growing up as a healthy child for 12 years. πŸŒΈπŸ’™ I am one of the #MILLIONSMISSING due to M.E. #GoBlueForME #CanYouSeeMEnow ~ Photo description: Soft pink children's shoes printed with hearts and teddies shown on a bed alongside white adult Converse lace ups. ~ ~ ~ #spoonie #chronicillness #invisibleillness #sickchick #mecfs #meawareness #spoonieblog #hypermobility #chronicpain #MEawarenessweek #meawarenessday
What would I like to see for myself & fellow M.E. sufferers? 🌸 More than windows from the inside, that is of course what I'd like for everyone. For us all to understand our bodies for free on the National Health Service, for us all to be given treatment and recover. πŸ’™ Realistically though? From professionals (doctors, politicians, teachers, social workers) I want to see our realities reflected in their text books and legislations. I don't want anyone else's primary school to be making notes on "problems with the home life" and "overprotective parents" when the notes they should be making are accurate ones on the severity of a genuine, debilitating illness. 🌸 From everyone else? From everyone who thinks there's "nothing I can do," we need a change in attitude. We need belief, we need RESPECT and we need support. Anything from reading accurate blog posts on life with a chronic illness to taking the time to arrange a truly accessible meet up for a friend who is sick. My illness being invisible isn't an excuse. You can't always see it but that doesn't mean you can't hear what we're all saying. Choose to hear & Choose to believe us. ~ Photo description: Last day of the #sskPhotoChallenge for ME awareness week, photo showing my windowsill & view of sky and trees outside. (My windowsill is pink and the sky is blue with some white fluffy clouds) ~ ~ ~ #spoonie #chronicillness #invisibleillness #sickchick #mecfs #meawareness #spoonieblog #hypermobility #chronicpain #millionsmissing #canyouseeMEnow #MEawarenessweek #Chronicloveclub #GoBlueForME
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