Acceptance and self-care during the tough times

It’s been ages since I posted a personal update here, so I figured it was time. The last little while hasn’t been great in some ways. My health has been not so good, even by my standards of ongoing not so good health, but it took a serious dive about a week ago. The background to this is pretty much impossible to summarise, but I shared some detailed information about it here in July, so if you read ME and me: Living with Myalgic Encephalomyelitis the rest of this post will make a lot more sense.

I went from physically struggling but sort of coping to literally cannot in the space of a day. All it took to push me over the edge was a couple of nights with not quite enough sleep and one busy-ish day. This is a thing that happens and after almost a decade and a half, I should be used to it. But I’m not. A crash like this never stops being awful, at least partly because I have no way of knowing how long it will last. Sometimes it’s a couple of bad days, other times it’s a couple of bad weeks, and then there are times when it lasts for months or longer. The non-crash times are still pretty rough, but I can mostly handle those.

At the start of last weekend, I was a total mess. I couldn’t sit up, feed myself or get to the bathroom without help. Breathing was difficult because it requires energy to breathe and I didn’t really have any. I was super grateful to be able to get online for a bit and feel like part of the world, albeit not the physical world.

Over the last few days, I’ve gradually reached a point where I can sit up for a bit longer at a time, make simple food for myself once a day and potter about the flat slowly as long as I’m careful. Frustratingly, I can’t use my walking frame or canes or more than a day at a time because my arms, shoulders and upper back can’t take it. If you could see my arms and shoulders, this would sound ridiculous. I have substantial muscles that I’ve worked hard to build. They just don’t always function the way I’d like them to.

As much as I’d like to be all bright, shiny and positive all the time, it is really hard to maintain consistently high levels of enthusiasm when things are like this. I keep reminding myself that I don’t owe anyone fake smiles and I have no obligation to be an Inspirational Disabled Person or prove that I’m Trying Hard Enough, but it’s not just that. Enthusiasm is my natural state of being. I get excited about stuff. Like, annoyingly excited. I’m highly motivated and love to be productive, and it busts my head when I can’t be.

So I’ve been feeling pretty down. It takes a lot for me to actually recognise that and even more to admit to it. It’s not like an all-encompassing depressive episode or anything because I still feel happy when I’m writing, or chatting to people online. I still feel inspired to take photos and have really enjoyed getting back into setting up tiny still life scenes that I can work on and photograph without having to stand up. So I’m generally OK, I think. Everything isn’t awful. I’m not falling apart in an ongoing way.

But I do fall apart in small ways. I’ve been doing quite a bit of waking up crying, avoiding mirrors and breaking down over seemingly insignificant things lately, and I’ve been struggling to process the realisation that in-person social interaction is contingent on doing things that will make me severely ill afterwards. I’m grateful that I get invited to things, even if I can’t usually go to them, and that I have friends I can talk to online, but when it comes to actually seeing people and doing stuff, most of the time I just can’t. If it was temporary, I’d be able to deal with it better. But it isn’t. It’s my normal. When I’m feeling physically less terrible I can be more philosophical about it, but when I’m feeling like this, when I get out of breath from sitting up at the computer and typing, it just makes me sad.

So I’ve been trying to strike a balance between accepting and processing the (completely understandable) sadness, and focusing on things that help me to feel less sad. I’ve been burning my favourite incense, colour-coding my notes in Scrivener with pastel rainbow shades (my NaNoWriMo project is beautiful!), drinking delicious tea, sitting on the back step and watching the birds in the garden or lying on the couch with the door open and listening to the rain.

As well as the social interaction realisation, I’ve also realised that it is entirely possible to recognise all the joy and beauty in the world while still feeling sad. Those are not mutually exclusive events, but it’s hard to stay up-beat all the time. It’s hard not to be angry with my body. And I don’t want to be angry with my body. I don’t feel comfortable with the battle/fighting language that is often wrapped about the experience of living with a disability because I am not at war with myself. I’ve learned from experience that always pushing harder and being in a state of conflict is counter-productive, that it’s healthier to find acceptance, and that acceptance is not the same as giving up. It’s just being OK with where I am now, wherever that may be, and understanding that the best way to get to a better place, however temporary that is at any given time, is to look after myself.

I recognised some troubling old patterns and coping mechanisms nudging at the corners of my mind, so I’ve taken steps to deal with them sensibly. When I feel like any aspect of my life is out of control, I start to think about not eating, as if that will fix everything. That is A Bad Thing and I absolutely cannot indulge those feelings because I know where they lead.

So yesterday, I removed everything to do with food and calories from my Fitbit dashboard because that stuff isn’t relevant right now and I’d found myself getting really stressed out every time I thought about not being able to exercise or having to prioritise accessibility when it comes to what I eat. I feel relieved now. Being able to keep an eye on my heart rate and sleep cycles, and make sure I remember to drink enough water (I am terrible at that!), is really useful, and when I’m in a place where the other stuff is relevant to my existence again, I can easily pick up where I left off.

Right now I’m working on self-care. When I have a little bit of energy, I work on character development and outlining for my NaNo project, or I scroll through Twitter or Ello, or I chat with my fellow DeviantArt volunteers. If I want chocolate, I eat some chocolate. I wear my comfiest pyjamas. I cuddle the cat a lot. I listen to my favourite music and watch trash on Netflix. And it’s good. It’s helping. It doesn’t help what’s happening in my body, but it helps me to cope with it.

I’m hoping to be able to manage a trip to the supermarket tomorrow with my husband. I know that doesn’t sound very exciting, but I haven’t been able to get out of the house for over a week now and I’m going kind of stir crazy. Also, I suck at online food shopping. It’s been a few days since I’ve used my canes, so hopefully my upper body will deal with those for a little while. I don’t have any major plans until October – a weekend of witching and indulgent food with friends mid-month and a couple of nights at a lovely hotel over Samhain with my husband – so if a supermarket mission ends up wiping me out for ages, at least I don’t technically have to be upright again for a few weeks.

In the meantime, I’m really excited about my writing projects and photographing small things, I’m enjoying my Patreon adventure (my Patrons are amazing and I’m so appreciative of their support!) and I’m grateful for all the good stuff ❤

Finally, please read the Matchstick Theory. It’s a disability metaphor, like the Spoon Theory, but way more accurately reflects how energy and ability resources are affected by external factors as well as day-to-day needs and choices.


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Self-care printables for help with anxiety, depression, PTSD and dissociative episodes

For various reasons, including high pain levels and horrendous sleep-maintenance insomnia (when you can get to sleep but can’t stay asleep, and your sleep is highly fragmented), I have days when I struggle with anxiety attacks and dissociative episodes.

Because I want this blog post to be a non-triggery safe space for people who may have found it because they’re having headweasels right now, I’m not going to go into detail about symptoms. Instead, I’d like to share a coping strategy that helps me. This is not intended to be a substitute for medical advice and it may not work for everyone. All I know is it works for me and therefore might be helpful to others.

I use my journal to do this because I find writing with my favourite fountain pen in a lovely notebook really calming, but if notebooks aren’t your thing or you’re not in a place to start laying out worksheets for yourself, I’ve included downloadable printable versions at the bottom of this post. They’re jpegs so you should be able to open and print them on pretty much any device. They’re A4 size at 300dpi so you can scale them up or down to suit. Anyone is welcome to download and use them. I’m fine with them being shared too, but please share this post directly rather than downloading and reuploading the files. Thanks 🙂

 

Self-care and comfort

Things to do today
This isn’t intended to be a giant list of super important tasks for work or hardcore housekeeping. It’s supposed to be a list of things that help you to stay safe and comfortable, and perhaps a few things that you really need to get done. For example, my list for today includes cuddling my cat, a short yoga practice, laundry, and a quick check on my emails and social media notifications. Depending on how you’re feeling, you might want to include some basic personal hygiene tasks, or a reminder to call or chat online with someone you love.

Eat something
When my mind is imploding, I suck at remembering to eat. It’s generally a good idea to eat something a few times a day, so this section on the printable has five stars (they could’ve been boxes, but no, stars are better) so you can colour one in or tick one off every time you have a munch. Feel free to add more stars if you like – whatever works for you.

Drink something
I’m referring to water or tea here, although if the only way you’re going to consume liquid is if it’s in a sugary or fizzy format, at least you’re hydrating so don’t beat yourself up over it. It’s a good idea to drink at least two litres of non-alcoholic, preferably non-caffeinated, liquid a day. I’ve included five stars here too, but you can scribble one out or add more to suit the size of your favourite mug, glass or water bottle. If thinking about amounts of things is too much at the moment, just use this as a reminder to drink something.

Move around
I’m not talking about doing five gym sessions or five long walks in one day. This is simply meant to be a reminder to get up out of your chair if you’re able to, or stop what you’re doing and have a stretch if you aren’t mobile. If you’re able to incorporate some exercise-exercise, great. If not, don’t worry. This is about getting you through the day, not pushing yourself to the point of collapse.

Listen to…
When you’re having a difficult day, it can help to have a list of some of your favourite songs, artists, playlists, radio stations or albums to listen to. You don’t have to work through the list – it’s supposed to be there so you only have to think about this stuff once and then have a resource to refer back to for the rest of the day.

Watch…
Sometimes a favourite film or TV show can provide comfort, distraction or much-needed smiles. This is a space for you to make a short list of films or shows you love so that if you hit a point in the day when you need something to watch, you can just pick something from the list without having to start making big decisions.

Remember…
This is a take-it-or-leave-it bit, but it really works for me. Make a quick note of something that helps you to feel better. It could be a mantra like I am fine the way I am, or a reminder like I am loved, or something that you’re looking forward to like The weekend starts tomorrow.

 

Check in

Honestly, I laughed at this concept the first time I heard about it but when the shit really hits the fan, I’ve found it super helpful to ground me in my surroundings and my body. A check in is basically time you take to go through what’s happening in your physical surroundings, what you’re doing and how you’re feeling. It can take two minutes or half an hour – it’s up to you.

What time is it?
Don’t guess. Look at a clock, your phone, your fitness tracker, your watch, whatever. This gives you context for this moment in your day.

Where am I?
Try and give a bit more information than simply at home. For example, my last check-in “where” was in my favourite chair in my living room. This creates some solid detail.

What am I watching or listening to?
This gives you another bit of solid detail to ground you in your surroundings and gets you using your senses of sight and/or hearing.

What am I doing?
Resist the urge to write a check in! This is a prompt to do something to ground you in your body – eating, drinking, brushing your hair, stretching, massaging your feet etc – and gets you using your sense of touch.

What feels comforting?
A check in is a reminder to appreciate comfort, and create some if you can’t immediately recognise any in your surroundings. My last check in “comfort” was my orange scanted candle. Yours could be your snuggliest sweater, the light from your favourite lamp, the feeling of the lawn under your bare feet, anything in your immediate environment that makes you feel good, even in the smallest of ways.

How am I feeling?
This can be a one-word answer, a short sentence or a stream-of-consciousness ramble – whatever you need it to be. It doesn’t have to show progress and it doesn’t have to be filled with positivity if that isn’t where you’re at right now. It’s simply a prompt to notice what your emotions are doing and accept them.

Draw something
Seriously. It doesn’t matter what you draw or how detailed it is. It’s just a little task to do, something that gets your brain and hands working together. You can use it as a tool for expression or catharsis if you want, or you can doodle random shapes. It doesn’t matter. High-five for any Hannibal fans out there who are drawing a clock right now.

 

Grab your printables

If you’d like to grab the printables, click on the images below to open and download them full-size.

self-care-and-comfort-printablecheck-in-printable

 

A final note

I created these tools based on my own experiences and needs, and you are absolutely welcome to edit them to suit yourself. For example, depending on your senses you might skip the bits about watching or listening to things, or add more touch-based resources. If writing isn’t accessible to you or isn’t something you enjoy, you might prefer to speak your answers out loud or just think about them without any external expression. If you think it would be helpful to keep your worksheets to look for patterns, you can totally do that, but it’s not what I created them for. If you want to throw them away at the end of the day, that’s cool too. You do you. You’ve got this ❤

Self-Care Journaling

When shit goes down, I suck at looking after myself. It’s not that I’m bad at realising that I’m Really Not Ok™ (although it sometimes sneaks up on me) or being aware of what I need to do to help myself feel better. It’s not even that I’m bad at doing that stuff. I’m alright at doing it for a day or two, or doing some of it regularly, but I’m terrible at doing all of it in an ongoing way, which is what I really need to do. I basically become This Is Fine Dog.

thisisfinedog
By KC Green on GunShowComic.com (the original is at http://gunshowcomic.com/648)

Without getting into a whole medical history, cause that isn’t what this post is about, the route of medication and/or therapy does not work for me. I know this because I’ve tried it, lots of it, for years, and I swear to gods if anyone comments telling me I haven’t found the right medication or therapist yet, I will reach through the screen and tip a cup of coffee all over their keyboard. Not everything works for everyone even if it works for you, OK? Right. Onwards.

Actually accepting that I deserve to dedicate time and energy to not living in a constant state of physical and mental collapse took me a long time. About 35 years. I don’t like to casually throw words like ‘recovery’ around because I’m wary of unwittingly suggesting that doing some stuff that helps me with some things is a cure for anything. So, to make it clear, I have developed coping mechanisms that help with some things I experience and techniques that keep me out of my holiday home in Rock Bottom. Unfortunately my tendency to reach “I’m not entirely imploding right this second so I’m completely alright and can return to not giving a fuck about myself again and it’ll all continue to be OK” is strong and I reach that point over and over again.

As the result of some Pinterest browsing I found myself reading about self-care journaling and since I love an excuse to hoard notebooks and a reason to write (and I need to get better at not treating myself like crap), I decided to give it a shot. I’m going to talk about my own self-care journal, but this is most definitely not to only way to do it or the way that will work best, or at all, for you. It’s just what I’m doing and I only started this week so I’m not even sure how it’ll go in the long run.

There are no photos here of my journal because one of the most important things about it (again, for me – there are plenty of photos of other people’s self-care journals out there) is that it is completely personal and not for anyone else to look at. That said, I’m happy to share some of the content in text form, so here goes.

Make Time For
These are things that are good for my mind, body and soul but that I’m bad at making time for because of the stupid little voice in my brain that likes to tell me I don’t deserve to make time for anything that doesn’t benefit other people in some way.

  • Creativity (photography, writing, painting, making things)
  • Learning (online courses, books, documentaries, new skills)
  • Spirituality (study, ritual, connection to nature and the divine)
  • Self-Care (relaxation, exercise, healthy eating, pampering)
  • Connection (spending time with, and talking, to people I love)

Morning Routine
I have been meaning to get this sorted for the longest time. I have a terrible habit of turning on my phone while I’m still in bed and reading emails before I even get up. Because of various physical and mental health issues, mornings are  really not good. I often wake up in a lot of pain, already in stress’n’panic mode, so it’s super important to me to have a routine that helps deal with those things.

  • Conscious breathing (being still and focusing on my breath)
  • Drinking water (I’m not sure why but this helps me wake up)
  • Affirmation (more on this in a minute)
  • Yoga (not a full session, just a little bit of good stretching)
  • Morning blessing (including lighting candles and incense on my altar)

If you’re interested, my morning blessing is a sweet little elemental one I found somewhere ages ago and fell in love with.

Air to inspire
Fire for desire
Water my healer
Earth my church

Spirit to guide me
Along the way
I call upon you
To bless this day

I don’t have any caffeine or look at any screens until after my morning routine. I’m not even going to pretend that’s easy but I’m pretty sure it’s worth it.

Monthly Goals
Because part of my problem is that I get a little bit too focused on achievement and productivity, I don’t want to set goals that involve doing something a specific number or times or on certain days. I choose things I want to do once or at some point or a bunch of times, and am totally not stressing about doing them every day at 3pm or whatever. November’s are…

  • Start the day with reading instead of the internet
  • Go for a walk in the forest
  • Watch a documentary on a subject I know nothing about

I also have a section on this page called How Did It Go? that I’ll come back to at the end of the month and fill in with some thoughts about how doing these things made me feel and how they helped me. And I will not beat myself up over not managing to do them all as often as I’d like!

Weekly Affirmation
I may change this to monthly, but for now I’d like to have a different focus every week. This week’s is I deserve to experience unconditional joy. On this page, I also make a quick note about why I chose the affirmation. This week’s note is I need to remember that I am allowed to be happy without having to earn it. Happiness, fun and positive experiences should not be contingent on achievement, success and productivity. It’s easy to say the words but not so easy to truly mean them. This is a tough one for me but it’s important and it’s something I’ve struggled with since forever.

Weekly Logs
These are pages for making short notes on specific areas. It’s not a habit tracker as such, which I know some people love for this kind of thing, but part of looking after myself is specifically not tracking, assessing and evaluating Things I Have Done. It’s simply a place where I can record experiences I’ve had, somewhere I can look back to when I’m a mess and need an easy reminder of things I can do to help myself feel better, and a gentle prompt to do things that are good for me and think about why and how they help. My weekly logs are divided into…

  • Creativity
  • Learning
  • Spirituality
  • Self-Care
  • Gratitude
  • Inspiration

Life has held some pretty big changes for me recently and while these are good changes, they haven’t been easy changes and still aren’t. I’m flitting between Yay! I love the feeling of potential and possibility and Oh my gods, what the hell am I going to do? followed by a bit of I’m just going to sit here and cry for a while about a thousand times a day so I’m doing my best to focus on actually trying to do good things for my mind and body, and being open to ideas and inspiration, without always looking at the next step.

I was talking to my husband about how I struggle to be kind to myself unless I’m also being useful and he said, “It’s like putting on your own oxygen mask before you help someone else with theirs. You can’t do anything for anyone if you can’t breathe”.

❤ Tanya