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You don’t have to focus on trying to look abled. A lot of us feel a pressure to try and hide things because we don’t want to impact other people. But it’s okay to be disabled. And it’s okay to look disabled.

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Pinkouple

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I have the stress of updating my risk assessment at work since I’ve had some time off. There’s nothing quite like -bam in your face reminder of all the things people know about you that you wish they didn’t but it’s for your own safety- like a risk assessment.

I’m gonna put it off until next week to give me some time to emotionally process it. There’s just no denying that it causes me stress every time. So I’m going to give myself grace. I hope to arrive at logic so I can get on with it. It just feels heavy to read my diagnoses in black and white like that.

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Frustrated

I have to decide the night before when I am feeling poorly if I’m going to call in. It’s too much of a decision to try and make at 6 am when I can barely think. I have to remember it’s about the rest before the fall - not the collapse and then the crumble.

🌩️ I’ve had a facial tremor in my eyelids and eyebrows for a few days now. It got more prevalent today and so I came home. It’s not nice to feel like you’re losing control of your body.

🌩️ I admitted to a close colleague I was scared I’d end up having a seizure. It’s the not knowing. That’s the hardest thing. Constantly fighting back every worry to do with them with firm self belief is exhausting. I’ve got this. I can handle it. I get tired and it ends up with - what if I can’t handle this today?

🌩️ self advocating in the form of taking sick days has to be one of the hardest parts of this. To wade through the guilt and grief and anger and arrive at a rational decision is so hard. To try and weigh up what is too much to handle and what you can muddle through with.

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MY NEIGHBOR TOTORO となりのトトロ 1988 | dir. Hayao Miyazaki

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Today we went out and parked in the disabled bay (I finally got my pass) and I used my stick and we didn’t do more than we needed. We drove to another spot instead of walk and we bought lunch instead of making it. And you know what?

I saved spoons 🥄

And I spent them making a truly cursed hedgehog cake for the weekend and singing to music with my headphones on.

I am so grateful I had today to do this and recharge. I am grateful for my bus pass and that I am at a stage in life where I am able to go to the gym. It’s given me some some strength and I think I’m bouncing back a little bit better. I am grateful for today.

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Crashing: back to work

I’ve been at work for a week and the fatigue has hit quite hard. I’ve been showing a new colleague the ropes and pushed too hard. I wasn’t getting any warning signs until the last moment and then down I went on the familiar downward cycle. I want to go to the gym today but I know I need to slow down so I don’t enter burn out. Things I have learnt.

🥀I notice my warning signs better these days

🥀6 weeks off is enough to forget how to pace! I work in a school so it’s a massive change to routine!

🥀 accepting help is getting a little easier

🥀 taking responsibility and stepping in to call the shots of when to go home is getting a bit easier

🥀 the shame is lessening

The smaller warning signs that a fatigue attack (or whatever I’m meant to call it) that I don’t ignore now are :

🍄 feeling dizzy even though I’m hydrated and have eaten

🍄 waking up more tired than I usually do (I find it hard to remember to compare)

🍄 working out how physically far away things are comes to the top of my priorities

🍄 it is harder to concentrate, sit up and I walk slower and stay closer to the walls

🍄 things start to feel a lot heavier that I can normally lift with ease

🍄 I start to count the hours left in the day

🍄 I start to feel nauseous and achey - general malaise when I know I am not going down with something

Things I do to start helping myself out:

🍇 sit the fuck down when I can

🍇 not feel bad for asking people to carry stuff and open things for me (honestly all the doors are fire doors at work and it’s not great)

🍇 prioritise everything: decide what’s urgent to do and what can be delegated and what can wait - better one day now than a week because I pushed from fatigue into pain

🍇 whack out the stick - deal with the comments by just steamrollering them with other stuff or jokes or if it’s the kids and/or I cba to explain I normally say something like “my body gets more tired than my brain so I need help” - kids are actually better at taking an answer tbh

🍇 decide when I will probably be done and organise the “exit plan” - I used to push past the exhaustion point and learn the hard way and also it ended up creating more of an issue tbh. The illness being the issue - I was trying my best and was not intending to “cause” more issues by overstaying my fatigue - but I know it better now. People know what happens if I stick about - they don’t need to for it to be ok I am going. It helps somewhat. But I didn’t need to “show them proof” for it to be valid. This is a hard point.

🍇 nibble food. Drink Diet Coke for the nausea (should probs be peppermint tea but I don’t like it). Hydrate.

When I get in from a lift home I :

🎒dump everything. Do it another time - not important right now

🥤drink and snack integral - probably leave a wake of chaos but it is so much better to wake up to than hunger and thirst. Bedside table

🚰 wash face if the spoons are available

🛏️ Collapse in bed and try again another day

That’s the routine for now. Maybe one day it’ll be better - I hope so. It’s a hard job to do without fatigue. So I hope for a less demanding job one day that still gives me fulfilment. But I am so thankful for my patient coworkers who give me a lift home and keep an eye on me on the bad days. I do the best I can. I hope it shows. I hope my presence helps even on these days. Also I hope this is not a crash and I can be back up and running by the weekend. We’ll have to see.

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🍡 Happy little habits 🌸

Since January I’ve been very, very slowly building up some daily/weekly habits. Previously I’ve always started too big and burnt out on them.

Using 2 Apps - 🌸 Finch and 🌸 Habit, have been integral to this. I tried bullet journalling in the past but couldn’t keep it up. I do my dailies at night before bed and this helps me check off from the day.

I’ve found habit stacking (combining habits) very useful as well. I make the habits very small and on the difficult days they are still attainable - and on the good days it feels amazing to go beyond. For example I read in the bath or on the bus to the gym. I do tasks like cooking as soon as I get in from work to not get out of the flow. 🛼 Gamifying habits (setting rewards and using apps that are cute) I’ve found is the best way to cultivate my own motivation.

Daily fixed:

🍡 Read 1 page of a book minimum

🌸 Write one sentence in journal minimum

🛼 10 sit-ups, 10 press-ups, 10 squats

🍡 5 minutes on Duo Lingo

Daily unfixed (try to do):

🍡 Meditation on Balance

🌸 Do the dishes (or at least tidy them)

🛼 Put away clothes (or at least organise them)

🍡 Write affirmations and gratitude

Weekly:

🍡 Go to the gym twice

🌸 Do a cozy hobby

🛼 Call my family

🍡 Contact a friend

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💝 Surgery date came through. One month count down. Grateful I was born into a country with free healthcare. Fingers crossed to easier periods. 💖

💖Nervous though - I’ve never had surgery before

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I really miss playing Animal Crossing ☁️🍃

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SWEETIES!