Week With M.E. 2020

Sakara's head on her pillow, she's cugging a cuddly toy unicorn and looks cosy.

May contains awareness weeks and days for multiple chronic illnesses, including M.E and E.D.S. (which I am diagnosed with) and Lyme disease and Fibromyalga (which I don’t have).

From Monday the 11th to Sunday the 17th of May 2020 I shared daily snippets of my life for M.E. awareness week. Instagram stories, where I originally posted this content, aren’t the most accessible medium. So I’ve used this blog post to transcribe most of my speech, as well as any written text I shared. I’ll also insert each day’s Instagram post from my main feed, so you get a full picture of the week.

I kicked off on the Monday by sharing this video of an awareness song I wrote called Battered and Bruised:

The lyrics are included in the video’s description box. Now, onto the week-long diary…

Introduction:

This is something I’ve done twice before in M.E. awareness week, sharing daily snippets of life with my disabilities via Instagram stories. In the months since last year’s posts, I’ve experienced some of the worst mental health symptoms I ever have, as well as managing my physical symptoms. My mental health is currently more stable and I’m feeling safer, so these stories won’t need to address any triggering content. But it was important for me to mention that the happiness I’m feeling now has not come easily, and I value every moment with it. I consider sticking with my life (and caring for my body with rest when needed) to be a defiant act, political at times. It’s never simple or without challenges and goes against all the ableism we are taught throughout out lives.

My case is not representative of this illness, let alone all chronic illnesses and disabilities. I can share only my own days, and even they vary greatly. My health is currently not at it’s worst but far from my best.

I chose a loose subject idea for each day in order to guide myself. In previous years I’ve felt like I had to document everything, every day! So this plan helped to make it more focused and less intense for me.

Monday 11th:

Waking up // Music group

A life-changing difference between M.E. and healthy tiredness if the fact that sleep can be “non restorative” and often rest doesn’t help. Doing too much hurts so rest is essential, but rest can’t make me “better”.

Essentially: I wake up exhausted and aching every single day.

“I’ve got a feeling that sounding and looking okay is going to annoy me over this next week (as this illness is, you know, invisible. And in my worst moments I won’t be up to recording).”

I was speaking most of this sitting up in bed, wearing a pyjama t-shirt and sounding tired, though not looking very noticeably different to an able bodied person who’s recently woken up.

“I always sit up in bed for a while before I get up because it minimises the chance of me falling over when I stand, my body get- ge- gets used,” (so much for sounding okay!) “gets used to um yeah I don’t remember the technical terms or how it works but it sort of does so I’m doing it.” Hey, I just woke up, I’m no doctor right now.

That stammering or getting stuck on a word (“gets” in the last quote) is a cognitive symptom I often deal with.

I’m always trying to fix everything and pillows are something I’m constantly battling with to find a way out of neck/head ache territory. Long story short: I ache all over and there’s not much I can do about it. Most days I feel an improvement once I’ve been up and stretched, other days urgh… I reach the kitchen, turn around and go back to bed with the blind down. Today was a get back in your bed one.

Later that day:

Had music group via Zoom tonight, you’d think that would be less tiring but (and I’ve seen other chronically ill people say this too) it can be more draining than in-person interactions. For example, when I go to music group, I can curl up on the sofa and let the world happen without me for a bit, whereas on call I’m more alert constantly with everyone keeping up the conversation. It can be more intense. I’m grateful to have these people though, I have plenty of disability related isolation memories where there were no weekly calls to break up the quiet days…

Later again:

Truth is it’s 23:48 and I’m disorganised and confused and headachey because whenever I Do A Thing (like music group) it buzzes out my brain and I forget how to focus and wind down for the evening/to sleep.

Gotta be kind and remember the confusion and buzz are a symptom, not simple procrastination.

TUESDAY 12th: 

Thinking about independence and day to day care, especially in relation to self worth and “quality of life”.

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M.E. Awareness Day 2020 ???? Yesterday I shared my song (up on IGTV & YouTube if you missed it) and all week I'm posting in my stories about day-to-day life with this condition. Or rather, MY life with this condition. As each story is anything but generalisable; everyone is different. ✨ Having said that, the responses I get from people (some friends, some I've not chatted with before) shows that – though no two experiences are identical – there are common factors. Times of loneliness, misunderstandings, a loss of identity and then the struggle to find it again, through a fog of confusion and reliance on other people for personal care. ✨ Look on hashtags like #ChronicIllnessandME and realise how much more we are than numbers. Every one of those numbers is a human. A human both missing from a mainstream life they've dreamt of, and very present in this alternative, because we are real. We do still exist. And we exist in the same world as everyone else. Start not just talking about us, but talking to us and with us. Learn, involve, help. As I said when I was about 16: "The moment you choose to see us is the moment we stop being invisible." ???????? Love to you all x Speaking of us being more than numbers, this particular statistic of a sickly human has an interest in #TheVintageFashionChallenge so this photo is in honour of today's "1930s" prompt. I'm wearing a 1930s bed jacket from the wonderful @donnaflowervintage, with a nighty underneath that belonged to my mother's grandmother! This is one of my favourite photos I've taken recently ????✨ ~ Photo description: Mirror selfie taken with a large black camera. I'm a slim white woman wearing the clothes described in the caption, in soft tones of cream and peach/pink. Sitting with my legs over the side of a wicker chair. ~ ~ ~ #Spoonie #SickChick #MeAwarenessWeek #SpoonieBlog #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #TrueVintageOOTD

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Hi everyone

You might notice from these videos that I spend more time in semi darkness than you’d expect from the photos on my feed. Yesterday I talked about the way I feel when I get up and s-s-sleep *looses words* sleep not making me feel better and today…” On the following slide, I stopped speaking and chose to type instead to avoid any more word-loss based confusion.

I’ll type this or we won’t get anywhere fast:

After the achey wake up I talked about yesterday, there’s breakfast. Breakfast is the first time I notice how much help I need.

Something I’ve had to admit to myself recently is that, without my parents, I would need to employ carers. Daily.

I’ve gone from being looked after as a child to being cared for as a disabled adult by the same people so… I didn’t notice.

If left on my own, most days I would stare into the fridge with complete confusion and not know where to start. Other days I’d have all the ideas but be at a high risk of falling over while cooking them together.

Even now I feel like I’m exaggerating.

I’m not.

I want to use today as an example, since this is supposed to be a video diary of sorts:

My parents weren’t in the kitchen when I got up, I ate fruit salad. Even though it’s too high in sugar for the diet I’m supposed to be on. It was all I could compute in my head to eat (hard to explain the cognitive side of things).

After that, I went outside to feed our rabbits. I was dragging myself around picking up their food and it was… Confusing trying to hold their food while getting over to the cage. Then my legs collapsed and I fell over. My mum came outside and sat by me on the floor, shielding me from the sunlight that was too bright.

Because of all this, I can’t work in a traditional sense.

I can’t move out (unless I’m prepared to employ and manage carers which I’d find overwhelming).

I can’t care for myself without daily support.

I’ve heard there are legal guidelines that equate needing support in day-to-day activities to a lower quality of life.

As though your life is less worthwhile.

As though my life is less worthwhile.

I’ve grown up thinking becoming an adult would mean becoming stronger and taking care of myself. I felt like, to earn my right to a voice and any sort of satisfaction, I had to first “take responsibility” for all my own basic care.

Please don’t believe this.

Please remember you have a right to your vote, your voice, your sense of self and self worth REGARDLESS of what financial contribution you can make to the world, REGARDLESS of how much support you need.

I believe in the quality of our lives, of our existence. I believe more should be done to improve our quality of life (medical research, financial support etc.) But the system is what’s lacking. The system is the let down, Not me, not you.

[Later]

There was an important call to be made about me this evening to someone at the local authority who’s involved in education.

I wanted to talk to him a little, rather than it all coming from my dad.

But I couldn’t rely on myself to get words out.

I was upset, talking to my mum and saying I don’t know where my average phone-call-nerves end and where my brain fog/cognitive symptoms begin.

I don’t know when to push myself into doing things and when to move back and rest.

My mother suggested I email him instead, I cried in relief at having a middle-ground option between phone-talk and no contact at all.

Thought this important to tell you because I always seem so full of words but they don’t always work with me when I need them.

WEDNESDAY 13th:

Let’s be honest here:

I’m rubbish at resting.

Be it because I’m still trying to prove I’m “trying my best” after years of being made to feel like it was my fault if I didn’t get better, or just because everyone’s all non-stop these days and it’s hard enough to settle if you’re able bodied, let alone if you’re sick and know that

1) You haven’t “earnt” rest in the widely accepted (read: ableist) sense,

2) If you do stop all the distractions, you’ll be even more aware of any pain you’re in.

Unlearning the idea that rest = waste isn’t easy, sending love to anyone who’s trying to rethink all of this!

 Ways I’m trying to introduce more rest:

• Making quiet playlists of music. Distracts my brain just enough to keep me settled for longer.

• Aknowledging that even fun messaging with friends on my phone is NOT restful. It’s enjoyable and important but still drains energy.

• Today I turned off message notifications for Instagram, I’ll still check my messages every day, but when I feel able to respond rather than when I’ve just gone on my phone to download a podcast!

• Sitting outside when it’s warm enough and not too bright. Reminds me that the world doesn’t always move quite as fast as my brain.

 Adaptations:

Light. We have a lamp in the living room with a dimmer bulb so there are options when I’m more light sensitive, I use blinds, curtains (need new ones since my room was redecorated…), fairy lights, dimmer switches, sunglasses… It’s all second nature now.

Minimising distractions. I’m overwhelmed easily, this means I spend a lot of time alone when the rusting of someone’s clothes would be enough to confuse and distract me.

Last night eating dinner I had to take my clip on earrings off because being aware of them was making it harder to eat.

Making lists. I have two note books. They’re my brain now.

Rarely eating at the table. I do sit at the table but more often than not the sofa is more supportive and just makes the task of getting through a meal more managable.

Even these posts, I’ve been making notes on what I want to talk about to make it less stressful as well as reducing the amount of talking videos.

Feels ironic talking about rest right now when I’ve been really bad at it, since finishing my GCSE course… Because I’ve been doing a lot of work on… The social media side of things and not acknowledging that it’s work for my brain & body. … And wearing myself out as a result.

Special mention of something from that written list:

The part about people being too much for me. It leads to me getting annoyed (or crying), I can’t hold proper conversations, it leads to me feeling like I can’t be myself.

Like I’m not a “nice person”. Essentially not confirming to social norms which require much energy and focus and all that jazz. Like I just cannot handle human interaction effectively and I, I don’t know… It’s just… A big thing.

That I don’t like.

Here I shared a short video of myself playing guitar in fading sunset light, then this photo:

In the caption I talk about not taking things like clean hair for granted after years of struggling to wash regularly.

THURSDAY 14th:

Thinking about music, outside time and friendships.

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1950s // Create Something ???? Having this account has given me the excuse to pose for and /or capture countless photos, put together far from "everyday" outfits and express myself in ways that might never have occurred to me if I felt like nobody would see. Being here has helped in times of more intense personal isolation than the one we are currently going through together. Being here has given me reasons to stay here. With every post we create not only art but community. We create something that is truly invaluable ???? #ChronicIllnessAndME ✨ I'm happy to be a small part of many communities here, tied together by illness, style, music or CATS (!!!). There's so much to each and every one of us, and I never cease to be amazed and enchanted by the variety of things each person I know decides to share with the world. #TheVintageFashionChallenge 1950s Ball Gown from @donnaflowervintage ????✨???? (this photo is from last year, the hair gives it away a bit…) ~ Photo description: I (a young, slim white woman) sit on a wooden chair on green grass wearing a black and green ball gown with a sweet heart neckline. I'm smiling slightly and looking thoughtfully into the distance. My hair is long and brown, a little of it blows in the wind. ~ ~ ~ #Spoonie #InvisibleIllness #SickChick #MEcfs #MeAwarenessWeek #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #TrueVintageOOTD #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #StuffThatHelps #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel #WordsForThought #Thinkers_And_Writers

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Played guitar in bed earlier, I was supposed to be lying down to rest… Argh, Sakara!!

One way I “practice” is by recording something I’m working on and listening back to it. This helps me to memorise things as well as giving me a chance to figure out which bits don’t feel right. All without physically needing to play and sing every time. Headphones and voice recordings save me a lot of energy.

[Later]…

Today I woke up thinking about this time last year.

I remember only one person I had met recently in the physical world followed my Instagram account. He found it just before M.E. awareness week and I nearly blocked him from viewing my stories!!! I was so nervous about being this open, knowing that a new, able bodied friend would be able to see everything I posted.

I didn’t block him because I realised this was supposed to be the whole idea, to explain this reality of mine to people who might not be aware of it otherwise (as well as being a visible example for people in similar situations to relate to).

I never asked if he read my stories or skipped them but he was always there in the “people who viewed…” list. The first person to view the last post I made that week. I think he did watch them because he became more understanding about my illnesses, We had some conversations too. I told him about symptoms, feeling like I’d rambled and he wouldn’t be paying attention to my messages. Then, in person, he’d notice when I felt bad and reference something I had explained to him, asking if that was happening at the time. It was like somebody else had stepped into my alternative-world bubble, the one nobody usually notices is even there.

Not everyone is in the fortunate position I am, others are bullied or abused by close friends and family and it’s not safe to talk openly about their conditions. But “if you can do so safely, share a post about your illness by someone who talks about it gently. There’s always a place for anger and pain when talking about the experience of being marginalised but sometimes a softer touch makes it easier not to feel guilty about sending someone something and starting the conversation. Like, use a post by an artist or something…” I’m not saying you SHOULD feel guilty about approaching the subject, only that I understand if you do because I’ve felt that way as well.

Having someone there who can, if you fall over, say “no she’s not messing around, this is real.” so you don’t have to speak and can lay on the floor and recover, that made such a difference for me.”

HOWEVER

These people (who support you as a disabled person), when you find them,

They are not heroes.

They are not your saviour.

They are not angels.

They are not above critique. Sorry darling, this life isn’t a young adult novel and the lack of alternative narratives to “she was saved by the kind and gracious knight!” is damaging.

So here I am, quietly writing songs for my album about being better off on my own, on the floor. #RepresentationMatters

“The point I’m trying to make is that, firstly, I’m cold. It’s colder than it looks out here. No wait… That wasn’t the point, hang on…”

1) talking to your friends and asking for support and understanding isn’t something to feel guilty about.

  • If you’re a friend of somebody who is chronically ill, ask them how you can help them, ask for simple things you can do (& BELIEVE IN THEIR LIVED EXPERIENCE EVEN IF IT’S REALLY DIFFERENT FROM YOURS)

Thirdly /3) When people do support you it doesn’t mean they’re angels and it doesn’t mean you’re indebted to them.

It should be a basic level of human decency rather than an exception to the rule. Hopefully one day the former will be the case. “Not everyone wants to be picked up when they fall over, not everybody wants their wheelchair to he pushed. It’s different things for different people. We’re all individuals. Nature of being human.” Oh I was also supposed to say wasn’t it nice sitting outside in the cold with a cuppa. Very refreshing after hours in my darned bed.

Feat. my “Aaa oops sit back down feel woozy” expression. And thanks for coming to my seminar on disabled people being worthy of decent friendship/any human relationship and having the right to tell people to be reasonable or get out of your space.

Hi I wore myself out ranting on the internet.

Then I went hyperactive-tired and now I’m sat here on a come down wondering how I ended up rewriting the chorus of Spandu Ballet’s “Gold” to make it about self worth (though the original is kind of on that topic anyway now I come to think of it, making the rewrite entirely pointless).

The only reason there’s no video evidence of me dancing about/falling over doing this is because my phone died.

FRIDAY 15th:

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1960s-'80s // Hope ✨ Oh how apt! Most of my favourite clothes are from these eras, photographing myself in them recently has helped to restore faith in life & joy that I thought was lost for me. This is a photograph from an upcoming blog post, I took the mirror from my bedroom out into the garden and felt like @satellitejune for a few minutes (even though I'm shooting on digital, not film!). As was clear in yesterday's post (prompt: "Create Something") I've always used anything artistic as a way to feel a part of communities and drag myself though another day, even if I'm resistant to the idea at times. ????✨???? #TheVintageFashionChallenge & #ChronicIllnessAndME prompts. #TrueVintageOOTD (this dress is a favourite from my first trip to a @worththeweightvintage fair with my sister). ~ Photo description: photo taken in a mirror, thin white woman wearing a 1970s soft orange and black coloured dress that flows gently. The background is a green spring garden. ~ ~ ~ #Spoonie #SickChick #MeAwarenessWeek #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel #WordsForThought #Thinkers_And_Writers

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Awareness week is always weird.

I forget how sick I am usually.

Partly because it’s my normal, partly because my head is always so full of stuff even when I’m lying in bed doing nothing.

I’m planning a song or a blog post or having an imaginary conversation with one of my favourite people/ a chat show host / whatever. This is great but also means the moments when I realise how few of these fantasies I have the energy/ability to act on can hit me hard. Got a guitar lesson at 2pm so it’s about time I get dressed and pretend to be an average human in preparation ✨ The lessons are online via Zoom now.

I mentioned on Monday how that shift makes music group more draining/over stimulating but as a one to one lesson it actually makes today easier, ’cause I’m avoiding the treck into town. Allow me to join the ocean of people bemoaning the fact that it only took a world wide pandemic to make people consider accessibility (I do know of more than one place/person who’ll be continuing online learning as an option after the pandemic. I hope that helps a lot of people from now on.) “I enjoy going out when I can and the weekly trips to town for my guitar lesson are like -woah I’m gonna fall off the stool! Um..*laughs*” What I was trying to say is I do miss going out physically as I get a lot out of it… But because I don’t want to miss them I go when I’m not really up to it, I end up crying for “no reason”. Sometimes it’s too much and you just need to cry.

I’ve fallen over before now on my way in there and it’s… Not easy. This one time I’d fallen over on the way in, then started hyperventalating at the thought of having to get back down the stairs carrying my guitar.

I was thinking it wasn’t fair, I just wanted to be independent, transport myself places safely, carry my own stuff.

What I SAID was “but I just want to drive cars.” While crying at my poor guitar teacher.

Weirdest thing is I think he sort of knew what I meant.

[Vienna by Billy Joel is Playing] “Slow down you’re doing fine

You can’t be everything you wanna be before your time…”

When you’re sick it feels like “your time” takes a lot longer to come around than everybody else’s.

[Later:]

Vitamin C and tri salts mixed with water help to calm reactions (like those caused by chemical sensitivities) In the body if I remember rightly.

It’s my answer to everything.

Nausea?

Panic attack?

Woozy?

Fall over?

Overwhelmed?

Whatever.

I drink this.

Seems to help (isn’t good for everyone though).

SATURDAY 16th:

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Mixing it up / Numbers. Funny story: just before this photo was taken I was wearing a massive 1980s golf jumper over this ball gown (scroll back in my feed to see a photo of that combination from last year). I looked up the street, no cars. I took off my jumper, arms stretched above my head, aaaaand almost flashed my chest to everyone in the bar to one side of the street. I say almost, not because it didn't totally happen. Just because I don't think anyone noticed. (The top of this dress is a little big on me so there's enough movement to allow for unfortunate events). As for the #ChronicIllnessAndME prompt for numbers… Well, scroll through hashtags like that. Take a look for yourself at the numbers of people living with M.E. and conditions like it. As for personal numbers, I remember a time when I started keeping track of what I did, counting the amount of times I left the house in a month, if I went out at all. I felt the tracking was becoming an obsession. An unhealthy way to rate myself and my health, a way to compare myself to others. So I stopped. I loosened my grip and try not to make simplistic summaries of how I'm doing, based on a numbers game. One number I can tell you is that I've been ill for 14 years now. I think maybe I should stop counting that as well. Because with a more realistic understanding than I used to have (especially of my hEDS), I know I'll be counting until the day I die. ~ Photo description: thin white woman standing in the middle of a road/street wearing a 1950s ball gown in black and green. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #TrueVintageOOTD #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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This year I made some notes on topics I’d like to reference each day so I didn’t get so overwhelmed trying to talk about everything every day. Didn’t list anything for the weekend but last night I slept terribly and did a lot of thinking so I’ll try and share some of that. “To be honest with you I really don’t know how to condense hours of rambling and tears that took me to 4:30AM into a couple of 15 second videos for Instagram, so this is a struggle…” Let’s start with my hair is damp from a bath because I’ve decided they’re tiring but worth it to slow me down and make me rest all the aches and pains. Then move onto the fact that my blind is up to let light in, I’m remembering to do time on my oxygen concentrator and I’m sitting next to my bed rather than on it. “Life is a constant balancing act and there are no right answers but it feels like the there are a lot of wrong ones aaand, yeah.” This is so hard to explain because it’s SUCH a complex balance but basically:

Seeing more daylight won’t fix my light sensitivity (been there, tried it, hurt a lot).

Equally FOR ME PERSONALLY it’s important remember to brave the light and going downstairs / getting out of bed WHEN I CAN because it’s refreshing.

I was told by medical professionals “it only hurts if you do too much” in regards to pacing. But that was wrong. Something always hurts. It’s more a case of how much exhaustion I can tolerate vs. how much depressing darkness and ache-making rest I can tolerate.

Honestly, doing stuff makes me ache, not doing enough stretching and moving about makes me ache.

Good luck balancing those scales every darned day. Last night I got thinking about what I want.

About what would make me happy.

And, as it feels for most people, I wanted what I can’t have.

A simple step by step socially acceptable plan of university and falling in love and moving out of my parents’ house and doing my hair all neat to go work as a psychologist or something. Come home to a lot of love and a cat or two and bake cakes at the weekend.

I want simple things to make me happy.

But there’s so much to be angry about. There’s so much I want to change. So much I want to tell people about how damaging the prescriptive “steps to happiness” kind of life plans are. The kind we grow up seeing everywhere.

How wrong it feels to ask children what they want to “be” when they grow up, and expect a job title in return.

I’m 19 now. It’s time to decide what sort of grown up I want to be. I want to be happy, safe, comfortable, surrounded by animals and music. I want to be Sakara.

A messy, beautiful adult human, not a job title.

(I swear I haven’t been sitting here all day)

I’m currently v confused.

Should probably put my phone down.

Turns out if you post places you get comments and if you post in multiple places you get comments accross different apps and and and and my brain cannot compute all the worlds at once what wait who am I I wanna nap but my body doesn’t nap also I wanna go for a walk but my body doesn’t do proper walks but also I think I’m having a reaction to something I’ve eaten because I feel a bit frazzled look this is all one sentence does making it this long count as mastering the skill of committing to a big project?

SUNDAY 17th:

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Future Fashion // Community ????When I read these prompts a picture of @annieelainey wearing one of her THE FUTURE IS ACCESSIBLE t-shirts came instantly to mind. As well as the hashtag #AmbulatoryWheelchairUsersExist I thought of all those featured in the first edition of @ablezine, I want to give examples but there are just so many articles in there that mean the world to me. I thought of @littlepineneedle's #BabeWithAMobilityAid hashtag. I thought of @anniewadesmith in the latest edition of @amber_mag. I thought of @rvbyallegra, of #CPunk hashtags, of the academic unicorn who is @zoes_story and of the ever enchanting @jessicaoutofthecloset. I think also of @theslumflower and @florencegiven, two women who's words often come to mind if I find myself falling into old habits of valuing every human I know except for myself. This is far from being a list of everyone I admire or take inspiration from but I hope it's a half decent cross section the kind of people I hope are represented more fully in future fashion. Because fashion & media are far from trivial. The representation they provide helps to validate our experiences, it's important for everyone to see themselves reflected in these worlds ???? #TheVintageFashionChallenge #ChronicIllnessAndME I'm wearing a green jumpsuit from Miss Selfridge (…Via ebay) and a vintage-ish shirt from @worththeweightvintage ~ Photo description: A young, thin white woman using a wheelchair. Wearing a lilac shirt and green trousers, a pale blue disposable mask, blue socks and green converse. She's surrounded by spring greenery on a village path. ~ ~ ~ #Spoonie #ChronicIllness #SpoonieBlog #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledFashion #SittingDownStyle #BabesWithMobilityAids #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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Woke up this morning thinking “hey I feel a bit more ready to wake up than I usually do!” Only turned out it was about 12pm and not morning at all.

So I ate “breakfast” had a little rest then ate lunch and now it’s the middle of the afternoon.

“On the plus side I have a song I was meaning to film for weeks for a local community thing… And I’ve finally done it.

I was kind of shaking as I played it so kept having to restart because I’d hit the wrong string when my hands tremble.” “Whenever I mention that to people they think I mean I’m nervous, I don’t. I mean I have an autonomic condition and I shake a lot… I mean sometimes it’s nerves but mostly it’s cos I’m sick. Umm so people are like “I understand!”,”

(Uh, I don’t know if referring to it as an “autonomic condition” is actually correct. What I mean is it messes with my autonomic nervous system/automatic functions in my body. I think what I meant to say was “A neurological condition” oops.) “…”I get that too!” And I’m like *pulls a ‘well not really’ expression*

I mean my pyjamas were in the background and I didn’t realise but… Such is life… I’m not filming it again!” [Singing in a video while playing acoustic guitar:] “But now it’s only safe to stay at home, and you’re not used to being alone, I know I know I know…”

(Okay I might have just sung that better than I did in the full video…)

[A little later]

Sakara lays on her bed hugging a magazine to her chest.

Had @ablezine for months now but have been reading it on & off slowly. (Nearly finished now!)

To begin with I couldn’t read it because I felt such a mess and seeing the people featured in it who’ve been expressing their creativity and talking about disability highlighted every insecurity I was feeling.

I’m near on crying typing this because it’s so much nicer to live wanting to learn from other people, rather than being constantly on edge feeling as though life is a competition I loose every day.

It’s okay to need time.

It’s okay not to know what you want to say, or to know that you’d rather be quiet right now.

It’s okay to take this life at a pace that is right for you.

Breathe.

[Later again]

Bit nauseous,

Very headache,

Much dizzy.

Seems a good note to end A Week With M.E. on.

I haven’t got some fancy message of inspiring goodness, solidarity or whatever to end this on.That’s the point. This was a week of me living a life and thinking some thoughts. A human. With feelings and stuff. We gotta improve people’s ability to balance two facts and accept them similtaneously: 1)Marginalised (e.g. disabled) people are human in all the “normal”, complex, wonderflu flawed ways. 2) We have a lot of far-from-“normal” rubbish (read: discrimination) to deal with end equality (though closer than it has been in the past) has not yet been achievedd for any marginalised group I vcan think of, not in any true sense.

I got distracted on a rant about general inequality and stuff but in terms of M.E., because this is supposed to be about M.E… Though I do kinda have E.D.S. so where does that leave… Uh I don’t know I can’t see [said while looking uncomfortable in the light from the window] …I can’t think while the light is in my face (nice demonstragtion of how light sensitivity and sensory overload mess me about) [moves to a fdarker part of the room and is now laying on the floor] “I have no memory of picking up this teddy but I’m glad that he’s here with me… Are you a he? I don’t know. Anyway, what am I doing? My point being… This condition is real and hard to live with and bleh. And I am still a human being. Not despite it or because I’m overcoming it or something but just because I’m a human being that has a condition. You’d think that would be easy for people to get their heads around. Doesn’t seem to be. Apparently we’re either benefits cheats or absolute angels. Because obviously you’re either faking extreme pain and an inability to do things or so you can get a merge allowance from the government (that’s actually really hard to get) or you’re some kind of super human because everyone would rather die than live like this, how do you manage it!? [sarcasm] But the truth of it is I’m a messy human and this was my life for the week.

So thank you for watching! Now I’ll get back to living like this every day without rambling on about it so consistently. Believe people suffering with these conditions. Speak out when people around you discriminate and take action to help when you can. Everything here has been saved to a story highlight on my Instagram so these slightly woozy antics could be enjoyed far beyond the 24hrs after posting. I hope to have made this blog post as accessible as possible (many images don’t have photo descriptions as I already fully describe them in the surrounding text).

See you again next year… Maybe…

This was exhausting though so equally, maybe not…

-Sakara

I’ll leave you with a feed of my other Instagram posts relating to M.E. Awareness month in May:

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"I can't access my own work." ???????? May is the awareness month of M.E. and E.D.S., two chronic conditions I live with (specifically hEDS). I made this photograph in response to a #30Works30Days prompt about accessibility. This is the way I've felt a lot recently. Not only as though I don't have access to things outside of myself, but that there are countless works of art, academic essays or time spent with friends that I'll never be able to access, that will never be created because of my disability. Being denied access to what feels like your "true" self is a hard thing to come to terms with. ???? Though, as @lifeofpippa said in her perfectly worded post, I'm beyond fortunate to be able to do the things I can and am in no way representative of the worst these illnesses are capable of. Today's #ChronicIllnessAndME prompt was current feelings, those were some of mine ???? P.S: I'm not a medical professional but IF YOU'RE ABLE TO SIT WITH YOUR HIPS TURNED AT THIS ANGLE please take care and avoid the position whenever possible! I was warned off sitting like this by my physiotherapist, you can cause yourself more aches/pains/damage. I only did this for the time it took to get the photo as a visual representation of a mostly invisible condition (the hypermobility is a part of EDS). ~ Photo description: photo taken from above of pale, white skinned, thin legs turned at a slightly unnatural angle, on one thigh the words "I can't access my own work" are written in pale brown (it's iodine). The person is sitting on a brown and cream patterned rug, there's a phone and a glass with a spoon in either side of them. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEAwarenessMonth #EDSAwarenessMonth #MeAwareness #ChronicLoveClub #ButYouDontLookSick #BabesWithMobilityAids #DisabledModel #RepresentationMatters #RetroStyle #AnalogueVibes #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #StuffThatHelps #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel #WordsForThought #Thinkers_And_Writers

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Hi everyone! Today I'm combining two challenges to introduce myself for #TheVintageFashionChallenge and share "small joys" for #ChronicIllnessandME ???? My name is Sakara, I'm a 19 year old musician & writer, living with multiple chronic illnesses and a love of flowing shapes & soft colours that draw me towards 1970s fashions. It's hard to find love and purpose in a life with pain and limitations. They're here though, I find them in comfortable yet stylish clothes, in nature, music, friendship and dreams. I used to identify fully with the #MillionsMissing narrative (a campaign which talks about the millions missing from our lives due to M.E.). Now I'm passionate about the fact that we need more diverse, mainstream representation of a wider variety of real lives people are living with these conditions. We're more than the dream of an able bodied person we once planned to be. It's not all or nothing, I'm neither completley content nor permanently devastated and entirely lifeless. I understand that millions of people are truly missing from where they long to be, but we're alive. We're here. It's acknowledgement, research and support that are truly absent ???? The first photograph is me yesterday, my personality, style and joy. The second &3rd show my wheelchair which is never far out of shot, the 4th & 5th are bonus selfies because I felt like a '70s singer songwriter posing for an album cover. The 6th & 7th are today: I'm currently in bed with my blind down. The 8th and 9th are screenshots of the challenges I'm taking part in (fuller photo descriptions in alt text x). ~ ~ ~ ~ #Spoonie #SickChick #MEcfs #MeAwarenessMonth #ChronicLoveClub #ButYouDontLookSick #DisabledFashion #SittingDownStyle #BabeWithAMobilityAid #BabesWithMobilityAids #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ShyInNature #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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Blue//Adjustments. This seemed a good day to combine a clothing & illness challenge because I've made so many adjustments to the way I dress. There are the physical discomforts that make some of my preferred vintage outfits uncomfortable (and energy consuming to wear) but there are also my cognitive difficulties. ✨ Most days staring at my clothes and trying to put something together which I'm happy with feels impossible. I now have a drawer of "day pyjamas" in my bedroom. It's filled with things I can coordinate easily (matching up clothes brings me great joy!) but which I can also guarantee will be comfortable. Trying to balance those two things in the world outside of joggers and t-shirts takes so much cognitive effort, which most able bodied people never even notice they're using. ???????? I hope nobody minds me using the vintage fashion hashtag when none of these clothes are actually vintage. I do feel that my (usually vintage-inspired) style manages to come through somehow, even when I'm wearing my comfiest outfits ???? #ChronicIllnessandME #TheVintageFashionChallenge ~ Photo description: digital photo / mirror selfie of a thin white young woman (me!) She looks as though she's almost/about to smile. There's a guitar in front of her to the side. She wears blue slim fit joggers and a pink and lilac floral patterned t-shirt. She also has a headband on and glasses. There are cuddly toys on a shelf behind her. ~ ~ ~ #Spoonie #SickChick #MEcfs #MeAwarenessMonth #ChronicLoveClub #ButYouDontLookSick #DisabledFashion #SittingDownStyle #BabeWithAMobilityAid #BabesWithMobilityAids #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel #WordsForThought #Thinkers_And_Writers

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Green // Overwhelm. Being outside, in the greenery I'm lucky to live in the middle of, is a big part of the way I deal with overwhelm. Often the times in our lives when we want to sort and smooth things out can be the most overwhelming. Whether it's the chest of drawers that needs to be emptied and sorted before it can be neat and organised, the big conversation that needs to be had before arguments are settled or the research & prep that goes into finding new foods you can enjoy eating. ???? I wanted to wear my 1950s ball gown for #TheVintageFashionChallenge "Green" prompt. When I picked it up from where I'd recently laid it over a rack of clothes, I realised a couple of hangers had hooked into part of the bodice and made (or widened) holes there. It's fixable but I cried when I saw the state of it. It felt like a metaphor for everything. For all the aches and pains hooking into me when all I've been trying to do for the past few months is organise improve the way I deal with life. I feel like a neat and responsible person, then exhaustion and overwhelm drag me into living like a mess, my self worth has hit the floor so many times recently. I'm building it back up now, gradually, but as with the dress example, there are always so many tiring hitches and snags when going through a "sorting my life out" phase. Especially for those of us who were already stretched to breaking point by daily tasks in average times. I know the dress I'm wearing is more blue than green but at least this time it's truly vintage! If rather young vintage. This dress belonged to my Nanny (grandmother) and has "Raysil Sample" written in the label, someone must've given it to her! The fact that it's a sample makes it extra charming to me and it's one of my favourite things to wear. I feel like Miss Honey from the film of Matilda ✨ ~ Photo description: Me (slim white woman with medium length brown hair) sitting on a white metal garden chair on green grass with various shades of green plants in the background. I look happy and am playing a brown acoustic guitar. My dress is creased, lightweight fabric with small pink flowers.

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Black and white // Medical advice. The perfectly matched prompts keep coming! This dress isn't quite B&W or neutral, though that warm orange tone in the flowers is definitely a staple for me. As for medical advice, that's all too often pure black and white. #ChronicIllnessAndME The official N.H.S. (UK) treatment options for M.E. are Cognitive Behavioural Therapy and Graded Exercise Therapy. When my mother asked at my children's M.E. clinic, if other options would be avalible on private healthcare, she was told catagorically: no. This was untrue. In the second picture the red indentation on my face is from the line of my oxygen cannula. I'm reluctant to talk in depth about the private treatments I've had because I don't feel qualified to do so, but I do take issue with the way medical staff are not given adequate training on invisible chronic illnesses like Lyme, M.E. And E.D.S., an omission that leads to them giving out misguided advice and not believing in alternative treatments that ARE AVALIBLE. I was also told I'd naturally "grow out of it" before long. And the break down I had when I realised that wasn't going to be true for me is a story for another 577,000 posts. (I have a LOT to say about it). As for the #TheVintageFashionChallenge side of things: the puffy shouldered delight of a garment I'm wearing in these photos is a (I think?) late 1970s maxi dress, it has a small extra teir/ruffle at the hem and a ribbed bodice. I picked it up at @worththeweightvintage a year or two ago! And I love it more now than I did back then. ~ Photo descriptions: 1: A blurry photo taken in a mirror, I'm wearing a black dress with orange details, 2: clearer mirror selfie showing a slight red line on one of my cheeks 3: alt text ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwarenessMonth #SpoonieBlog #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel #WordsForThought

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[At this point we went into M.E. Awareness week and the posts I have already included.]

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Lounging // Achievements ???? Most of my life revolves around lounging in various forms. I consider expressing my personality through clothing, while also allowing myself to rest, an achievement in itself. I used to feel like if I got dressed I was tense and unable to stop. My "loungewear" is mostly modern pieces that have a vintage feel: soft, stretch fabric flares (basically leggings, just cut differently), a retro T-shirt that used to be my sister's, the crochet cardigan which is just about visible in this photo (that's semi vintage, it belonged to my grandmother who gave it to my mum about 20 years ago, so it's definitely over 20! Beyond that I'm not sure). And I love my new glasses, nobody notices they've changed (especially since I got them just before lockdown, so seeing me via Zoom rather than in person has been the big, noticeable difference!) but I do, these are lighter in both colour and weight and go much better with soft, retro outfits. As well as my shorter hair!! I needed to get that weight off of my head!! #TheVintageFashionChallenge #ChronicIllnessAndME ❤ ~ Photo description: Photo taken in a mirror (though the camera isn't a part of the reflection). A young white woman smiling into the camera. Her hair is light brown. The colour tones are all soft. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #hypermobility #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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My Coping Toolkit // Listening ✨ I'm aware this is me singing as opposed to listening but oh I couldn't resist! There are other, more medical-based, things in my "coping toolkit" but music and words are a massive part of life for me. So this is a little of Vienna by Billy Joel, brought to you by a Sakara running on a questionable number of hours' sleep and about to crash as a result of the bath she took. Hence wet hair. ✨ Baths are another way I've been managing my days recently. They're soothing but also VERY draining. Which right now isn't a draw-back because it forces me to rest, something I must must must learn to do more of. This song is from a 1977 album, so it seemed an appropriate moment to drag out my '70s dress again. I'm glad I chose to take part in #TheVintageFashionChallenge because otherwise I'd probably be wearing joggers and a t-shirt right now, having forgotten this dress is equally comfortable. ✨ I've been listening to quite a bit of music from the '70s (and there abouts) recently like Carol King and Joni Mitchel. It's all nice and warm somehow. A bit like the colours in this dress. The other day I sung some of "Baby I'm-a Want You" by Bread out of the window to a stray cat. I don't think it will be swooning over me any time soon. ~ Video description: Visual: I (a young, thin, white woman) am sitting on my bed wearing a dress with both black and orange colours, my brown hair is medium length & wet, I look happy, roll my eyes a little at times and gesture with my hands while I sing. Audio: the lyrics include "slow down, you're doing fine, you can't be everything you wanna be before your time." And "you got your passion, you got your pride but don't you know that only fools are satisfied?". #ChronicIllnessAndME ~ ~ ~ #Spoonie #SickChick #MEcfs #MeAwareness #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #CoverSong #BillyJoelCover #1970smusic #ILoveCats I can't help it.

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Pretending… To be a 1950s lady on a beach holiday (only adding that cardigan gives anything a '70s feel) ????✨ #TheVintageFashionChallenge ???????? Today's #ChronicIllnessAndME prompt is "Past, Present & Future". In the past, I didn't realise how much I was living for pretence. For false hope of a total recovery from illness (not taking away from anyone who has/is currently recovering but I know I'll never be 100% able bodied), for an act of being okay, be that when I hid my face if I saw someone I knew when I was using my wheelchair, or when I strategically lied on mental health questionnaires, so my doctors couldn't invalidate my physical symptoms by blaming my mental health. Currently, I pretend I'm not alone. I realised recently that, though I'm well practiced at coping with isolation, this does not mean I'm suited to it. I think the reason my world is so alight with interest when I'm lonely is BECAUSE I'm lonely. Every photograph, song, scrawled paragraph or wandering adventure in the garden is a distraction. It's a valid life, in many ways a good life. But there's a reason I need all this make-believe. I don't know much of the future. All I know is that I have one. Which is something I've previously doubted. So that's good enough for now. ~ Photo description: thin white girl sits in a garden (with green grass and a thick green hedge) on a white metal chair. She has medium length brown hair and wears a flowery sun hat, blue shorts with a 1950s feel and a fitted blue top. She's also wearing a crocheted cream cardigan and big sunglasses. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #MEAwarenessMonth #hypermobility #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #ASeasonalShift

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I'm grateful for // Eating & Drinking ❤ I don't have any recent food photos so here's one from a year ago ???? Wearing an it'll-be-vintage-soon 1990s jumper and my nan's old dress (scroll back to early this month for a more dress-focused photo! It's the one I'm wearing in a picture in the garden, playing guitar) ✨ I'm grateful for so much. Sometimes it's hard to be, when there's pain and confusion at the edges of every moment, but I've had to learn that appreciating things and times I love, does not in any way invalidate the difficult aspects of life. ✨ Nobody can live in the dream of "good vibes only" and at the same time, it's rare to not have a single good thing to hold onto. I don't want to make a massive, public list of each thing I'm grateful for but I do aknowledge them to myself, and being able to eat (even if it's around food intollerances and fatigue) is one of them ???????? Prompts from: #ChronicIllnessAndME and #TheVintageFashionChallenge ~ Photo description: looking down on a girl's lap. She's holding a glass or bowl with strawberries, thick cream and bits of cracker in. Her jumper is cream and cable knitted, the dress is pale blue with small flowers. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwarenessMonth #hypermobility #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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Supporting // Lessons I've learned ???? Today I planned to "support" some other lovely humans taking part in #TheVintageFashionChallenge by sharing some of my favourites. However, one lesson I've learnt is that I need to support myself too. Throughout this month I haven't had much energy "spare" for scrolling through the hashtags of challenges I'm taking part in. So I'm looking forward to going through everything I've missed next month, when I'm a little less focused on posting things myself. I always want to do everything perfectly, straight off. But it's not always possible, especially when easily exhausted by the daily business of life. (I will make a "supporting" post like that at a later date!) For now, here's a photo that feels appropriate for "Supporting" and learning lessons: my mobility aids provide much needed support. AND this photo ended up as one of a wonderful bunch featured in an article by @lifeofpippa a couple of years ago (about younger power chair/scooter users for PosAbility magazine) ???? So that's the joy of a supportive community for you. The dress is @collectifclothing and the cardigan was from eBay. Hair courtesy of @theupdogirl (I still had it in from the photoshoot a few days before! //June 2018) ???? ~ Photo description: girl sits in mobility scooter wearing a full skirted gingham dress. She's looking out onto a duck pond. ~ ~ ~ #Spoonie #ChronicIllnessAndME #InvisibleIllness #SickChick #MEcfs #MeAwareness #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledFashion #SittingDownStyle #BabeWithAMobilityAid #BabesWithMobilityAids #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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Glam Again // Grief // Time after Time by Cyndi Lauper ✨ Now if someone said #TheVintageFashionChallenge gave Sakara a Glam prompt, what will she post? People would probably start picturing the 1950's Ball Gowns. But I rarely dress them up to feel glam. No makeup, hair-do, gloves or jewels. Massive skirts lend me more to a calm kind of serenity than striking glamour ✨ Today I've gone for a more '80s inspired look, with my Nan's old blazer (oversized on me), my mum's earrings (& a second pair of earrings found in a charity shop long ago) and 3 (yes, 3) of my favourite necklaces (again one belonged to my mother, one to my nan and one from another grandma!). Glam often involves things that are uncomfortable but somehow (… as a result of some rather dodgy conditioning) make us (especially women) feel good. So I felt playing a little guitar standing up fitted into the essence of glamour; it makes me feel good, it looks snazzy but it's not exactly comfortable. Aches, pains, shakes and falls all mean I've exclusively played sitting down, until the last couple of days. When I realised I love taking a moment on my feet to bounce along with a song. ✨???????? As for the #ChronicIllnessAndME prompt of grief: Over the years, I've missed many a glam moment I might've had. I've loosened my grip on these memories & losses recently. I thought grieving for the childhood and teenage years I wanted would be the hardest part. It was hard. But then, when I started putting the past to the side, I could see what I'm left with. A future of more loss, every day. More paths to be discovered which aren't accessible to me. It's a process of grieving for the memory of who you were, the dreams of who you might've been and the real, constant fact of denying who you feel you truly are. As I said at the start of this month, it feels like being denied access to myself. It's also a process of relearning what it is to consider your life a "success". Redefining how you decide your worth, in a world which automatically bases it on your ability to work, contribute and conform to social norms. Still, I'm safe to play out my standing-up-performance fantasies at home, with a bed to catch me if I fall ????

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On Second Thoughts // Happiness Is ???? Wanted to post part of a song today, wearing a 1930s dress I didn't feature on the "1930s" #TheVintageFashionChallenge prompt day. But, rather appropriately, I had second thoughts and ended up in bed with the blind down. (This photo is from last month, not today). ✨ Happiness is… A balance. It's never quite what you think it is. I want to say happiness is what I would feel if I could stand on stage all evening and play my songs to an audience, without collapsing or suffering severe payback. Equally, I want to say it's found in the simple things, the quiet times and the love of people close to me. ???? But happiness is neither the exclusive preserve of energetic, able bodied performers or easy to find in the muddling world of pain and distance we find ourselves in. It's somewhere in the middle. Happiness is respecting and caring for myself (even when that means relying more on others), to allow myself to have moments of strength left for what I love. Be that music, looking at flowers or fantasizing about befriending cats. Or, you know, slowly reading a book on language, society and power so I can figure out how best to question the ways in which our world is defined for us. All the good stuff. Oh, and cute photos sent to me by friends. Obviously. (Mostly of cats, but sometimes selfies. My friends are cute as cats). #ChronicIllnessAndME (P.S. I'm not sure when this dress is from, at which point I tend to guess '80s and go for a lie down.) ~ Photo description: Picture of me (19 year old, thin white woman with medium length brown hair) sitting in the corner of a room, looking directly at the camera. My dress has lots of colours on it. I'm hugging my knees. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwarenessMonth #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter #WriteWhatYouFeel

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Something Changed • There are countless ways to interpret #TheVintageFashionChallenge prompts, I'm going for a thought-ramble one today. The #ChronicIllnessandME prompt is "M.E./C.F.S. is like…". I've already shared enough similies and metaphors for this life over the years. So yes, something has changed, maybe everything has changed. I don't want to explain what the pain feels like every other post. That's exhausting. ???? As for other changes, my room has been repainted, I'm working on dressing less how I think I should "to make the most" of how I look, and more how I want to, to express the most of who I am. ???? M.E. is like a lot of things. M.E. isn't exactly like anything. I'm like a lot of people. I'm not exactly like anyone. ✨ Life's a contradicton in that change is constant. So yes, something changed. (None of this outfit is actually vintage, my favourite paisley flares were found in a Miss Selfridge sale years ago (4 I think! As I wore them on my 16th birthday!) And the T-shirt was my sister's ❤ (it's printed with my little pony and a rainbow). ~ Photo description: A mirror selfie of me wearing the outfit described in the caption, soft sunlight hitting my hair from a window to the side of me. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwarenessMonth #ChronicPain #ChronicLoveClub #ButYouDontLookSick #BabeWithAMobilityAid #BabesWithMobilityAids #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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[My next post wasn’t related to M.E. awareness so I’ll skip that one]

Which takes us onto my final post of the month…

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One last thing/ Please don't forget about ME ???????? It's the final day of May. I'll probably revisit prompts I've missed relating to #TheVintageFashionChallenge and #ChronicIllnessAndME so this isn't exactly one last thing. But I do want to say thank you. We live in a world where attention is more scarce than content to pay attention to. So thank you for choosing to direct some of your focus towards me this month. Please don't stop here. Don't stop dreaming of clothes from the past while acting to improve our future. ???? At the beginning of this month I saw something on TV about it being national asparagus month?? What?? Apparently that was more worthy of air time than Lyme, M.E., E.D.S. or Fibromyalgia. I struggle to reconcile this supportive bubble I call home on the internet, with there being so much work to do in the world. With marginalised people dying. Be that because of outright violence or a more subtle culmination of years of systemic oppression. Okay this got way too heavy for the caption of a picture where I'm being this "yay" person ???? Only… Maybe that's the point. Talking about these things isn't "too heavy", it isn't negativity, it's spurred on by the most positive belief I could hold: that it is worth speaking. That it is possible to change things. Yay to that. And something a lot stronger than "boo" to everything which opposes this change. Sending love to you all. And so much more besides. Sending attention and awe and appreciation and a willingness to learn from every incredible member of this community I've found myself in. ????????✨ ~ Photo description: A young, thin white woman stands under an arch in a garden. Her arms are up and she's smiling. She wears a green skirt and vest top with a cream crocheted cardigan. ~ ~ ~ #Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwarenessMonth #hypermobility #ChronicPain #ChronicLoveClub #ButYouDontLookSick #DisabledModel #OOTD #RepresentationMatters #UpAndDressed #OOTDSocialClub #RetroStyle #VintageFashion #QuietInTheWild #ThatAuthenticFeeling #LiveTheLittleThings #ASecondOfWhimsey #DreamingInPictures #OfWhimsicalMoments #TheArtOfSlowLiving #ThatVelvetFeeling #SingerSongwriter

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1 thought on “Week With M.E. 2020”

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