Self-isolation survival guide

From a postgraduate student in her 9th year since diagnosis

(aka things I do regularly that I don't think about anymore, but didn't know about when I was first diagnosed)

Analogue clocks

Put those guys everywhere. One of the best pieces of advice I found early on. Time seems actually real when I can watch it move around the clock! And visualise how long I have by the spaces on the clock face.

If you take medication, consider taking it with cranberry juice (or a cranberry juice mix).

This was a great piece of advice I got from an ADHD nurse (shoutout to Paul). It helps the medication last longer throughout the day!

On a similar note, try to avoid too much vitamin C right around the time you take your medication, as it can make it harder to absorb.

Write everything down.

You will not remember it.

YOU WILL NOT

(As in, you may remember many things, but the exact thing you need to know at the time may not be one of them. Save yourself)

Lists

I love lists.

When I was in the early stages of my recovery and everything felt like too much, I gave myself 3 things to do each day. Sometimes it was just like 1) get up 2) eat 3) read. But it gave me something to tick off and feel like I was going somewhere!

Consider using a diary.

This might not be for everyone, but for me, I really started to get the hang of scheduling things and actually getting my head around how much I could do in a day/week, and when things were happening when I started using a paper diary. Every year I get a 'Season's Greetings' set from one of my favourite kpop groups (whichever has the best diary/calendar setup that year), and that also helps because it adds the incentive of a special interest :)

Consider using a whiteboard monthly planner

I got one of these for the first time during my semester abroad in Korea when it felt like life was moving 200 times faster than it ever had for me and I had very little space to organise in. It was amazing, I could make a note on each day if anything was happening and then refer to my diary for details if needed, and see at a glance what was happening. Also good for pacing because I could see if I was going to have a busy week and try to plan accordingly! I started off with printable ones but now prefer the whiteboard kind because I can keep changing/updating it and it looks less cluttered.

A cute pill case(s)

If you take medication, this is really helpful. I make it a habit now to restock my pill cases at the start of each week (on a Sunday for me). I have 2 pill cases, one that's more travel friendly which holds a weeks' worth of lunchtime doses and lives in my backpack, and a traditional style dossette box that holds a weeks' worth of breakfast medication and lives on the table next to where I eat my breakfast. Since using this system with these particular cases, I haven't been caught short and haven't lost them, which is a minor miracle!

Find your thing

Try to find or think of something that always lifts your mood, even that little bit. For me, it's usually upbeat music. I set my alarm music as my favourite energising songs, and if I'm having a slow morning I like to listen to a morning playlist of similar songs while I get ready. I also play music in the car and it helps me chill out at the start of my day. Personally, I think certain kinds of music can be magic for ADHD brains, but this is just my opinion!

Keep moving

This isn't always straightforward for everyone (and certainly isn't for me), and as much as I would ideally do something energetic regularly, it doesn't always work out that way (if you can do something like martial arts, or dance, that would probably be amazing!) but I definitely find that if I've had a bad pain week and moved less, I feel more restless. When this happens, my go-to is usually just a simple stretching routine. It really helps to ground me and feel more aware of where I am. I still do love higher-energy movement, though, and fit it in when I can!

Be kind to yourself!

This isn't easy, but try to remember that you can't get it right 100% of the time, and it's okay to have bad days. Ask for help when you need it, be patient with yourself, and know that it takes time to understand your needs and build habits around them. You got this 💖

Hi, I'm Lily. I've been meaning to start something for a while now- maybe a Youtube or a 'proper' blog or something like that... but I keep finding reasons not to do it, and as much as it's probably partly because I am a champion procrastinator, I have to admit that I'm probably also a little scared.

If you want to skip to the 'why should I care what you have to say?' without the backstory, feel free to go to the highlighted purple section below.

So this is me starting a thing. To be honest, I think it feels like Tumblr is a 'safer' place to start something. It's a slower pace here, and (knock on wood) there aren't 500 bots waiting to ask if I want a definitely real giftcard in the comments the moment I pour out my soul. Plus, there's community, and I think that's also what I'm looking for.

Anyway, I wanted to start a thing to share a bit about my life and my journey, and hopefully to document/share as my journey continues. I've been told a lot by friends and new acquaintances and strangers on multiple occasions, "hey, your story is really inspiring- you should start (blog/youtube/something)". And I go, "Really? Maybe I will." And then I sit on it for weeks, then months, and here we are.

It's odd to think of myself as 'inspiring', and in some ways I'm not sure that I want to be. I would much rather be well than inspiring. If the inspiration comes from how I handle my pain, I'd rather just not have it. Maybe that's selfish. But it would be nice to have had the choice.

It reminds me of how my favourite author, T.Kingfisher, addresses the topic of heroism in a few of her books (quotes at the end of this post). Not that I'm calling myself a hero (I'm British and it's practically illegal to think so highly of oneself), but the way her books talk about it reminds of my feelings- and the feelings of some others in the disabled community, I think, though I'm sure not everyone- about being seen as an inspiration. If nothing else, both seem to involve "tedious stretches" of unglamorous life things and waiting around.

As it stands, I do have the pain. Every minute of every day, in fact. It's part of multiple conditions, but the overarching one is called Ehlers-Danlos Syndrome. I'll probably talk more about it. The pain used to be my whole life. Alongside the nausea, and the dizziness, and the 500 other random symptoms. It was all I could think about. At that time, I could barely leave the house. I had a carer, and was deemed unable to work or study. I struggled to eat, sleep, walk, do anything for myself, and especially to believe that it could get better. I believed a lot of things, including that I would never drive, never go to university and never fall in love. I'm very glad that I was wrong about all of these things.

I won't say I don't think about it anymore. And I find it unhelpful to hear 'don't define yourself by your disability!', because there is no part of me that isn't disabled. But I would say that my life is just bigger than that now. It's like it just grew, so although the pain and the illness and all the shitty parts are still there, there is more around it now, and it doesn't cover everything.

I don't want this to come across as a 'my life was awful, but then I did this one weird trick and now everything is better!'. I think you know it's more complicated than that. But the truth is that things are better, even if they're not perfect. Even if I'm still working on it. And I want to share that. I hope that I can share some advice and some of my experience over the 10 or so years of this journey so far. I hope that it can help someone. But even if all I can do is tell you that 'hey, maybe it can get better', then I think it's worth it. Because I know how much that would have meant to me.

In case you don't want to read all of the above (even if you did, you might find this interesting to know), here is a little summary of why I feel a bit qualified to talk about recovering from and living with debilitating illness:

Around 4 years ago, I:

Was housebound

Couldn't be left alone (for both mental and physical health reasons)

Felt alone

Was totally reliant on others

Had no social life

Thought I would never take part in any of my passions again

Thought I would never travel

Was an ambulatory wheelchair user (and didn't know what I was doing)

Couldn't leave the house by myself (if I did at all)

Had left education and didn't think I could go back

Didn't have hope

Only really left the house to go to the doctor's or hospital

Mostly wore pyjamas

Currently, I:

Have a Bachelor's degree

Am starting a Master's degree

Can drive

Have lived abroad for 8 months out of the past 2 years

Have been to 4 countries this summer alone

Have wonderful friends from around the world

Am in love (ew)

Can live independently and am planning to live with my partner soon/move out of my parents' house

Have had my first paid job in my dream industry

Can eat my favourite foods again!

Am stronger physically and have been training in Jiu-Jitsu, self defence and learning stage combat

Have greater confidence in my own understanding of my health and my body

None of this is to say that everything is perfect. Just last week I spent around 3 days at home, mostly playing Baldur's Gate, because I was in too much pain to do anything else. But the difference now is that on those days I was still able to take care of myself, and I knew that it wouldn't last forever. (I have also been trying to tidy my room for like 3 years, I'm chronically late and still working on admitting when I need to take breaks).

This year (academic year I guess), I want to find out more about myself, my strengths and limits, continue to grow and learn to take care of myself and bring the unique parts of myself to my work and studies while still honouring my body and its needs and limits. I'm going to try to talk about that here, and share any tips/advice/stories/ramblings about how I got here and where I'm going next.

If any of that sounds vaguely interesting, feel free to follow me here, or find me on instagram or tiktok as @its_lilyb or @lilbluerobin (I'm working on the unified branding thing)

So yeah, hi. I'm Lily. I'm disabled, and I used to be really sick. Now I'm less sick, and I'm working towards my dream life. I'm not sure if that's inspiring, or if I'm supposed to be. But I'm here, and I have a keyboard, so welcome to my little corner of the internet.

"She wondered if all the old stories of heroes slaying monsters and maidens locked in towers had involved long, tedious stretches of trying to find the monsters or build the towers in the first place. Probably. No, almost certainly. Who wants to hear the dull practical bits?

Me. I do. It would make me feel less like I am failing."

-Nettle and Bone, T. Kingfisher

"You expect heroes to survive terrible things. If you give them a medal, then you don't ever have to ask why the terrible thing happened in the first place, Or try to fix it... How else are you gonna have heroes?"

-A Wizard's Guide to Defensive Baking, T.Kingfisher

""Not...you know...heroic. She shouldn't have had to be a hero."

"No," said the Duchess, "No. No one should.""

-A Wizard's Guide to Defensive Baking, T.Kingfisher

he has hats 🍃

After about 6 years of trying to make this happen, and almost giving up a few months ago, I'm finally getting an assistance dog. I have 10 different disabilites, chronic illnesses and disorders and so as you can probably imagine, my lfie is quite restricted.

I really hope and believe that this pupper can change that, and together we can gain my independence.

It won't be easy though, or cheap- the charity estimates it will cost around £1200 for a year of raising him and training costs (that I will be responsible for, the charity will cover what they can).

I can't work right now due to my health, so I've set up a just giving page to help cover the costs of the first year of training and raising him. So far I've raised enough to just about cover basic assistance dog training (yay!) but I still have to pay for puppy classes, travel to the trainer, his equipment and of course the general costs of raising a puppy. I want to be able to give him the life he deserves and take care of him well.

I know times are hard for everyone, so if you can't donate then I understand and I don't want anyone to feel pressured. If you could share or boost the page or this post in any way I'd really, really appreciate it.

Thank you for reading 💜

P.s his name is Hobi, because he is my hope and sunshine, so if kpop tumblr could see and share this I'd be really grateful

Yes you

What time is it? Passed 11 pm, get some sleep and brush your teeth

Is it near lunch breakfast or dinner? Eat that

When was the last time you drank some water? Need to go get a glass

Hey did you do that thing? No? Well here’s a good time I’ll wait

Hello! You’ve been scrolling for a while. Please take a second and rest.

Have you drank any water recently? Please do so. Hydration is important.

Have you eaten recently? Please do so. Even a small snack will help.

Did you remember to take your meds? Make sure to take them as soon as you can! They’re important to help you function.

Have you stretched recently? Rotate your shoulders back and forth. Stretch your arms above your head. Walk in a circle around your room, if you can.

Have you been in one place for a long time? See if you can switch positions or locations. Check your posture if you can.

Have you been outside today? If you’re able, open a window, or sit outside for a little bit. It’s beautiful outside right now.

Are you meant to do something else right now? That’s okay! But this is your signal to close this window and give that something a shot, if you can. Go for it. Give it your best shot.

Are you up late at night? Please sleep if you can! Your sleep schedule is important to maintain. I recommend a warm drink and heavy blankets, if you’re struggling with falling asleep, or reading a good book.

Are you tense, anxious, or upset? That’s okay! Take a deep breath. Try to name five things around you. If you’d like, you can write them in the notes of this post.

Are you panicking, disassociating, or otherwise in extreme distress? Please take several deep breaths. Remove yourself from any uncomfortable situation, if you can. Here is a list of hotlines you can call.

Are you in need of a distraction, or are you bored? Here is a website where you can create pixel art. Here is a website to color mandalas. Here is a website where you can create characters’ avatars.

Here is a website of timed poses for pose drawing. Here is a website where you can help scientists identify frog songs, transcribe letters, and identify constellations. Here is a website for sand art.

Here is the entirety of Total Drama Island. Here is the entirety of the Ever After High TV Series. Here is the entirety of A Very Potter Musical. Here is a stream of Lofi music. Here is a humor video series about animals.

You will be okay. You are loved and appreciated. I am so proud of how far you’ve come, and thank you for reading. Take care of yourself if you can, and if you struggle, I know others will help you.

He made it himself

Person A gets injured or becomes suddenly unwell. Person B gets them help, they're going to pull through...but they have to stay on bedrest, and/or confined to hospital/the infirmary/sickbay etc. Person B misses them of course, this is sad. Their person A is injured...

but this is too good an opportunity to pass up

Person B has a precious few days/weeks to finally cross some things off their to-do list, and they don't have a moment to waste.

Some examples of the things they get done:

-Cooking

-Cleaning

-Sleeping

-Grocery shopping

-Getting their vehicle serviced (still damaged after their last escapade)

-Washing their clothes

-Going to the dentist

Heard some important information on Twitter today, and thought I’d post it here for anyone who may not have heard it. This is actually a thing, devised by human rights organisation called Karma Nirvana.