First #HeadwrapOfTheDay of 2023! Wearing my new “housecoat” which I bought in the holiday sales. I’ve been looking for a dressing gown that doesn’t look old lady-ish or like a bathrobe for months now and this fits the bill!

#DisabilityFashion #NEISVoid

Today’s #HeadwrapOfTheDay - nice and simple. Have already used the majority of today’s energy as I had a shower this morning, so the rest of the day will be a practice in being okay existing in a messy space until my meagre energy battery has recharged enough to tidy up my bedroom.

The meeting with my new social worker on Friday went well, by the way. It’ll be a few months but she will try to get me a PA - personal assistant - or small team of PAs! Exciting.

#MECFS #NEISVoid #disability

#HeadwrapOfTheDay from yesterday plus bonus new glasses, first new pair in 4 years! 👓

I’m a little crashed today with #PEM (post-exertional malaise, for the non #MECFS literate.) Very energy depleted.

Unfortunately I can’t rest all day as this afternoon is actually my long awaited social care assessment from the local council, to see if I qualify for any carers/support workers. Fingers crossed 🤞🏾

If I’m quiet this weekend it’s because I’m aggressively resting…

#disability #chronicillness

It’s been quite a weekend! Here’s the #HeadwrapOfTheDay from this morning. I made a bit of an effort as my mother-in-law & her husband came up to visit today- first time we’ve hosted people indoors for an extended period so pretty scary from a #Covid perspective! Of course masks were required and MIL even wore the FFP2 I provided. No eating/drinking indoors, of course. R took them out to local coffee shop for outdoor drink halfway through while I rested. Successful visit, but exhausted now.

Today’s #HeadwrapOfTheDay- I think this is the first one on this new server! If you’ve only just followed me this week, I normally post these photos a few days a week to show off my various headscarf styles.

Today, I’m trying to come out of #ADHD #hyeprfocus mode, which sounds like a good thing but often is not. I often think about the intersections between my #neurodivergent mind & my #Buddhist practice- it’s a challenge, to say the least. Maybe one day I’ll write about the experience.

Here’s today’s #HeadwrapOfTheDay! Currently reclining after breakfast and sipping coffee through a straw because my body is losing the fight with gravity these days due to #orthostaticintolerance. It’s amazing that only 4 years ago I was doing 12-hour shifts as a nurse & now I can only stand up for about 30 seconds before gravity forces me back to the earth. I wish I had known about #MECFS when this all started in 2014- they certainly didn’t teach us about it in nursing school. #pwME #NEISVoid

Here’s a #HeadwrapOfTheDay from a couple days ago- I don’t look as put together today but I did manage a shower/bath this afternoon which felt amazing! I got a burst of hyperfocus-fueled energy this morning but after some studying, showering and life admin that short burst has been depleted. Rest is the only thing left to do.

(wondering whether I should CW these posts- I don’t like that it blurs the photo if I do tbh so opted not to this time!)

#pwME #chronicillness #NEISVoid

Oh, and another reason I wear headwraps, which only became apparent to me once I started wearing them regularly, is the connection it gives me to cultural practices from Africa long lost to me as a child of colonialism and descendent of slaves. So there’s a bit of reclaiming going on there too. #HeadwrapOfTheDay

For anyone who didn’t follow me on Twitter, I post these photos generally a few times a week to show off my various #headscarf (or #headwrap) styles. I wear a headwrap most days for a few reasons:

1) Dealing with 4B/4C hair when you have an energy-limiting illness is EXHAUSTING- the scarf makes it easier

2) I’ve realised I like the sensation of slight pressure around my head (like a head hug!)

3) The original reason- they’re pretty!!

#HeadwrapOfTheDay