Alex
@alex-wears-crocs.bsky.social
Trying out this micro-blogging thing.
Life with autism, carers and chronic illnesses.
Life with autism, carers and chronic illnesses.
I love not being sleep deprived
February 11, 2026 at 9:25 PM
I love not being sleep deprived
Having a #powerchair makes it much easier to avoid overdoing it by doing bADLs, but also much easier to do other, non-essential, activities of daily living that I really shouldn't be doing. #severeME #spoonie #nospoons
February 5, 2026 at 10:12 PM
Having a #powerchair makes it much easier to avoid overdoing it by doing bADLs, but also much easier to do other, non-essential, activities of daily living that I really shouldn't be doing. #severeME #spoonie #nospoons
Don't run before you can walk... and don't walk before you can stand, don't stand before you can sit, and don't sit before you can be propped up in bed with your legs up without crashing from it. #babysteps
#severeME #POTS #orthostaticintolerance #chronicillness #spoonie #wheelchairuser #disabled
#severeME #POTS #orthostaticintolerance #chronicillness #spoonie #wheelchairuser #disabled
February 5, 2026 at 2:00 AM
Don't run before you can walk... and don't walk before you can stand, don't stand before you can sit, and don't sit before you can be propped up in bed with your legs up without crashing from it. #babysteps
#severeME #POTS #orthostaticintolerance #chronicillness #spoonie #wheelchairuser #disabled
#severeME #POTS #orthostaticintolerance #chronicillness #spoonie #wheelchairuser #disabled
I'm not #stupid, I'm #disabled. I need #help to figure things out, not to be redirected to information I already have #access to and expected to figure it out myself.
#brainfog #cognitivedysfunction #cognitivedisability #severeME
#brainfog #cognitivedysfunction #cognitivedisability #severeME
January 27, 2026 at 3:52 PM
I'm not #stupid, I'm #disabled. I need #help to figure things out, not to be redirected to information I already have #access to and expected to figure it out myself.
#brainfog #cognitivedysfunction #cognitivedisability #severeME
#brainfog #cognitivedysfunction #cognitivedisability #severeME
The thing about doing something perfectly every time is you never learn to correct your mistakes and try new approaches. #perfectionism
January 25, 2026 at 1:02 PM
The thing about doing something perfectly every time is you never learn to correct your mistakes and try new approaches. #perfectionism
Testing what happens if I add posts and Post All
1/3
1/3
January 23, 2026 at 6:40 PM
Testing what happens if I add posts and Post All
1/3
1/3
I don't want to forget myself
January 23, 2026 at 1:18 PM
I don't want to forget myself
Unpopular opinion: games don't need bosses. I'm perfectly content playing the same type of level over and over again.
January 22, 2026 at 10:51 PM
Unpopular opinion: games don't need bosses. I'm perfectly content playing the same type of level over and over again.
The great thing about having #POTS is that I never have to bother with putting my fan away in winter. I use it all year round. #heatintolerance #potsie #spoonie #chronicillness
January 17, 2026 at 3:05 PM
The great thing about having #POTS is that I never have to bother with putting my fan away in winter. I use it all year round. #heatintolerance #potsie #spoonie #chronicillness
#ME is not #FND. I have both conditions, and my #health deteriorated because it was assumed that my severely disabling #chronicfatigue was just another FND #symptom.
#spoonie #chronicillness #severeME #disabled #disability #medicalgaslighting #medicalneglect
#spoonie #chronicillness #severeME #disabled #disability #medicalgaslighting #medicalneglect
January 7, 2026 at 9:49 PM
#ME is not #FND. I have both conditions, and my #health deteriorated because it was assumed that my severely disabling #chronicfatigue was just another FND #symptom.
#spoonie #chronicillness #severeME #disabled #disability #medicalgaslighting #medicalneglect
#spoonie #chronicillness #severeME #disabled #disability #medicalgaslighting #medicalneglect
SOS doesn't stand for anything. It's just a recognisable pattern in Morse code.
. . . / _ _ _ / . . .
That being said...
Save Our Spoons please!
#chronicillness #spoonie #disabled #chronicfatigue #fatigue
. . . / _ _ _ / . . .
That being said...
Save Our Spoons please!
#chronicillness #spoonie #disabled #chronicfatigue #fatigue
January 7, 2026 at 3:57 AM
SOS doesn't stand for anything. It's just a recognisable pattern in Morse code.
. . . / _ _ _ / . . .
That being said...
Save Our Spoons please!
#chronicillness #spoonie #disabled #chronicfatigue #fatigue
. . . / _ _ _ / . . .
That being said...
Save Our Spoons please!
#chronicillness #spoonie #disabled #chronicfatigue #fatigue
The more I learn about ME, the more I realise just how poorly I was managing my illness in the two years before my diagnosis. I wish I had a time machine, but I don't, so I'm embodying Sisko from In The Pale Moonlight instead.
#MyalgicEncephalomyelitis #StarTrek #DS9 #chronicillness #spoonie
#MyalgicEncephalomyelitis #StarTrek #DS9 #chronicillness #spoonie
January 6, 2026 at 3:20 AM
The more I learn about ME, the more I realise just how poorly I was managing my illness in the two years before my diagnosis. I wish I had a time machine, but I don't, so I'm embodying Sisko from In The Pale Moonlight instead.
#MyalgicEncephalomyelitis #StarTrek #DS9 #chronicillness #spoonie
#MyalgicEncephalomyelitis #StarTrek #DS9 #chronicillness #spoonie
Having very severe ME is like having insomnia, but experiencing those hours you spend trying and failing to fall asleep all day every day. No stimulation, no getting out of bed, until you get so frustrated that you have to take a break. And then you try again. Over and over.
#severeME
#severeME
January 5, 2026 at 3:16 AM
Having very severe ME is like having insomnia, but experiencing those hours you spend trying and failing to fall asleep all day every day. No stimulation, no getting out of bed, until you get so frustrated that you have to take a break. And then you try again. Over and over.
#severeME
#severeME
Standing up with very severe ME is like going rock climbing without a rope. Sure, maybe some people can do it, but it's incredibly dangerous and risky, no matter how much you plan, and really not worth it except in exceptional circumstances.
#severeME #chronicillness #spoonie
#severeME #chronicillness #spoonie
January 2, 2026 at 10:26 PM
Standing up with very severe ME is like going rock climbing without a rope. Sure, maybe some people can do it, but it's incredibly dangerous and risky, no matter how much you plan, and really not worth it except in exceptional circumstances.
#severeME #chronicillness #spoonie
#severeME #chronicillness #spoonie
So apparently it's a bad idea to push the speed to max on your powerchair and zoom across your rather small bedroom... but I did it anyway because I was bored. I crashed into my shoe cabinet. It looks like it didn't take any additional damage...
December 31, 2025 at 5:53 AM
So apparently it's a bad idea to push the speed to max on your powerchair and zoom across your rather small bedroom... but I did it anyway because I was bored. I crashed into my shoe cabinet. It looks like it didn't take any additional damage...
Society is always trying to get people to be better and do more. Why aren't we just enough as we are?
December 29, 2025 at 9:00 PM
Society is always trying to get people to be better and do more. Why aren't we just enough as we are?
Hello!
If you're seeing this, you're probably a friend. I'm sorry I've had to send you this.
I have very severe ME. Please look it up; I don't have the energy to explain.
I'm sorry I haven't replied to your messages. I probably won't be able to get back to 1:1 texting for a while.
I miss you. 🥲🫂
If you're seeing this, you're probably a friend. I'm sorry I've had to send you this.
I have very severe ME. Please look it up; I don't have the energy to explain.
I'm sorry I haven't replied to your messages. I probably won't be able to get back to 1:1 texting for a while.
I miss you. 🥲🫂
December 29, 2025 at 6:15 AM
Hello!
If you're seeing this, you're probably a friend. I'm sorry I've had to send you this.
I have very severe ME. Please look it up; I don't have the energy to explain.
I'm sorry I haven't replied to your messages. I probably won't be able to get back to 1:1 texting for a while.
I miss you. 🥲🫂
If you're seeing this, you're probably a friend. I'm sorry I've had to send you this.
I have very severe ME. Please look it up; I don't have the energy to explain.
I'm sorry I haven't replied to your messages. I probably won't be able to get back to 1:1 texting for a while.
I miss you. 🥲🫂
Some days I'm okay with having very severe ME, and then some days I'm just trying not to breathe too hard or chew too hard and it's not very fun.
December 29, 2025 at 5:47 AM
Some days I'm okay with having very severe ME, and then some days I'm just trying not to breathe too hard or chew too hard and it's not very fun.
I'm annoyed that my #powerchair assumes I'm more #ambulatory than I am. What do you mean I'm supposed to charge it for a full 6 hours but avoid charging it overnight? It's my legs! #disabled
December 22, 2025 at 3:34 AM
I'm annoyed that my #powerchair assumes I'm more #ambulatory than I am. What do you mean I'm supposed to charge it for a full 6 hours but avoid charging it overnight? It's my legs! #disabled
I wish every #spoonie got to try a #powerchair. It would have been so good for me to know that getting one really is worth it. I didn't expect to get as much benefit from it as I have, and I didn't realise how much i was struggling before. #wheelchairuser
December 21, 2025 at 8:04 PM
I wish every #spoonie got to try a #powerchair. It would have been so good for me to know that getting one really is worth it. I didn't expect to get as much benefit from it as I have, and I didn't realise how much i was struggling before. #wheelchairuser
I want to give my #chronicillness to the next person who makes an insensitive comment about it. #spoonie #ableism
December 17, 2025 at 10:47 PM
I want to give my #chronicillness to the next person who makes an insensitive comment about it. #spoonie #ableism
I finally became a wheelchair user and it wasn't even a big adjustment. The only difference now is I go to the bathroom on wheels instead of on legs I can't trust to keep me up long enough to get back to bed. I like feeling safe. #powerchair #severeME
December 14, 2025 at 9:41 PM
I finally became a wheelchair user and it wasn't even a big adjustment. The only difference now is I go to the bathroom on wheels instead of on legs I can't trust to keep me up long enough to get back to bed. I like feeling safe. #powerchair #severeME
I want to run away, but I can't run away from my own body. I don't get to start again. #spoonie #chronicillness #grief #disabled
November 12, 2025 at 11:41 PM
I want to run away, but I can't run away from my own body. I don't get to start again. #spoonie #chronicillness #grief #disabled
Freebies are a genius marketing strategy. Of course I'll pay for the item if it turns out I like it enough to want to buy it again! 💸
October 21, 2025 at 11:53 PM
Freebies are a genius marketing strategy. Of course I'll pay for the item if it turns out I like it enough to want to buy it again! 💸