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”.
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.
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.
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.
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.
“This is the unimpressed face of someone who wants to spend all afternoon working on songs but is now too worn out.”
[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.
Tiny illustration of how my bedroom functions as EVERYTHING some days (guitar lessons/music room, dining room, resting, creating…)
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?
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]
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:
Pingback: Sakara is Blogging Again! – Sakara Dee