@lifeatthewindow.bsky.social
Disabled. Living with severe M.E. Watching the world from the window while bedbound. Excuse typos etc, sometimes the cognitive bits don’t work. Also posting on endometriosis and a little on mental illness too 🏴
Getting my hair cut off became a necessity for my wellbeing. I could only wash it once a month on average. I felt gross and not at all myself.
I love the buzz cut! I can’t take a proper self, cos arms don’t work that way. But I’m so happy with it and feel more myself 🙌🏼
Now, to rest. Phew.
#pwME
I love the buzz cut! I can’t take a proper self, cos arms don’t work that way. But I’m so happy with it and feel more myself 🙌🏼
Now, to rest. Phew.
#pwME
April 15, 2025 at 3:50 PM
Getting my hair cut off became a necessity for my wellbeing. I could only wash it once a month on average. I felt gross and not at all myself.
I love the buzz cut! I can’t take a proper self, cos arms don’t work that way. But I’m so happy with it and feel more myself 🙌🏼
Now, to rest. Phew.
#pwME
I love the buzz cut! I can’t take a proper self, cos arms don’t work that way. But I’m so happy with it and feel more myself 🙌🏼
Now, to rest. Phew.
#pwME
Standards are often in the bin when it comes to home care provision.
This is the second time different carers have left their USED masks like this on my kitchen worktop.
I’m livid. And I’m in a crash and I’m not fit state to deal with this.
What is even the thinking?!
#pwME #MECFS #HomeCare
This is the second time different carers have left their USED masks like this on my kitchen worktop.
I’m livid. And I’m in a crash and I’m not fit state to deal with this.
What is even the thinking?!
#pwME #MECFS #HomeCare
April 13, 2025 at 11:05 AM
I didn’t think I’d be able to read and understand poetry again.
So many, many months feeling the absolute loss of it.
It tires me quickly. I have to be wary of PEM.
But a little bit of ‘me’ has come back from delving into these pages.
I highly recommend both books ❤️
#pwME #MECFS #Poetry
So many, many months feeling the absolute loss of it.
It tires me quickly. I have to be wary of PEM.
But a little bit of ‘me’ has come back from delving into these pages.
I highly recommend both books ❤️
#pwME #MECFS #Poetry
April 10, 2025 at 9:38 AM
Progress is progress! This is the first time I’ve had an increase in my FUNCAP score since last August!
OK, it’s only 0.3 of an increase, but that is so meaningful to me.
I can sit up a little more and read a few pages of a book and a few poems a day 🥰
What a gift!
#pwME #MECFS
OK, it’s only 0.3 of an increase, but that is so meaningful to me.
I can sit up a little more and read a few pages of a book and a few poems a day 🥰
What a gift!
#pwME #MECFS
April 9, 2025 at 6:06 PM
Glad to see findings from Visible’s work with research partners.
But these go against my experience as a person with endometriosis, entirely. And those of others, anecdotally.
My ME symptoms are WORSE PRE-menstruation & mid-cycle. Oestrogen flares my endo & ME.
(1/2)
#pwME #Endometriosis
But these go against my experience as a person with endometriosis, entirely. And those of others, anecdotally.
My ME symptoms are WORSE PRE-menstruation & mid-cycle. Oestrogen flares my endo & ME.
(1/2)
#pwME #Endometriosis
March 20, 2025 at 2:59 PM
Glad to see findings from Visible’s work with research partners.
But these go against my experience as a person with endometriosis, entirely. And those of others, anecdotally.
My ME symptoms are WORSE PRE-menstruation & mid-cycle. Oestrogen flares my endo & ME.
(1/2)
#pwME #Endometriosis
But these go against my experience as a person with endometriosis, entirely. And those of others, anecdotally.
My ME symptoms are WORSE PRE-menstruation & mid-cycle. Oestrogen flares my endo & ME.
(1/2)
#pwME #Endometriosis
This is me and my brother in our 20s. We’re just over a year apart.
Like me, he has multiple disabilities.
Due to the 56 stairs to my flat and me being housebound, and him not being able to do stairs, we’ve been separated for 10 months.
I’ll get to see him when I move home! 🥰❤️
#pwME #Family
Like me, he has multiple disabilities.
Due to the 56 stairs to my flat and me being housebound, and him not being able to do stairs, we’ve been separated for 10 months.
I’ll get to see him when I move home! 🥰❤️
#pwME #Family
March 14, 2025 at 3:00 PM
My incurable illness, for which there is no treatment, stole my ability to work.
I am bedbound.
I will likely be found unfit to work for the rest of my life.
Now the Labour gov wants to slash my social security because I can’t work.
What future do I have?
#pwME #DisabilityRights #Labour
I am bedbound.
I will likely be found unfit to work for the rest of my life.
Now the Labour gov wants to slash my social security because I can’t work.
What future do I have?
#pwME #DisabilityRights #Labour
March 10, 2025 at 4:10 PM
My incurable illness, for which there is no treatment, stole my ability to work.
I am bedbound.
I will likely be found unfit to work for the rest of my life.
Now the Labour gov wants to slash my social security because I can’t work.
What future do I have?
#pwME #DisabilityRights #Labour
I am bedbound.
I will likely be found unfit to work for the rest of my life.
Now the Labour gov wants to slash my social security because I can’t work.
What future do I have?
#pwME #DisabilityRights #Labour
I can’t buy books from my favourite indy bookstores, thanks to M.E. preventing me from reading.
But, I did want to support one of my favourite stores by purchasing this little tote.
It’s hanging up in my bedroom.
I think @calton-books.bsky.social aced it with this one!
#pwME #HateFascism
But, I did want to support one of my favourite stores by purchasing this little tote.
It’s hanging up in my bedroom.
I think @calton-books.bsky.social aced it with this one!
#pwME #HateFascism
March 6, 2025 at 10:59 AM
I can’t buy books from my favourite indy bookstores, thanks to M.E. preventing me from reading.
But, I did want to support one of my favourite stores by purchasing this little tote.
It’s hanging up in my bedroom.
I think @calton-books.bsky.social aced it with this one!
#pwME #HateFascism
But, I did want to support one of my favourite stores by purchasing this little tote.
It’s hanging up in my bedroom.
I think @calton-books.bsky.social aced it with this one!
#pwME #HateFascism
On weekends, I used to drive to The Falls of Clyde waterfall trail and hike to the very top.
This is the Corra Linn waterfall in all her glory.
I love remembering the fresh air up there, the freedom of being so high up.
One of my favourite ‘memory walks’ whilst bedbound.
#pwME #MECFS
This is the Corra Linn waterfall in all her glory.
I love remembering the fresh air up there, the freedom of being so high up.
One of my favourite ‘memory walks’ whilst bedbound.
#pwME #MECFS
March 2, 2025 at 12:51 PM
What a gorgeous set of replies 😍
Here’s one of my favourites from my camera roll.
Here’s one of my favourites from my camera roll.
February 28, 2025 at 1:35 PM
What a gorgeous set of replies 😍
Here’s one of my favourites from my camera roll.
Here’s one of my favourites from my camera roll.
I love fuzzy socks too 🥰 I NEED St. Paddy’s day ones now!
February 26, 2025 at 11:27 AM
I love fuzzy socks too 🥰 I NEED St. Paddy’s day ones now!
Even though I’m stuck indoors, I can feel spring on the way, smell it in the air coming in from the outside when I open my window.
Here’s a throwback to a hike in a wild country park from a long while ago when I was lichen hunting.
Pixie cup lichen. What a cutie 🥰
#Lichen #Moss #OutdoorsDreams
Here’s a throwback to a hike in a wild country park from a long while ago when I was lichen hunting.
Pixie cup lichen. What a cutie 🥰
#Lichen #Moss #OutdoorsDreams
February 25, 2025 at 4:13 PM
Even though I’m stuck indoors, I can feel spring on the way, smell it in the air coming in from the outside when I open my window.
Here’s a throwback to a hike in a wild country park from a long while ago when I was lichen hunting.
Pixie cup lichen. What a cutie 🥰
#Lichen #Moss #OutdoorsDreams
Here’s a throwback to a hike in a wild country park from a long while ago when I was lichen hunting.
Pixie cup lichen. What a cutie 🥰
#Lichen #Moss #OutdoorsDreams
I absolutely love this film. Think I’m going to start my first rewatch this evening if I can manage.
It’s slow, enough time to contemplate the themes and nuance.
And it’s so beautifully shot. It’s a vision.
#Movies #SundayFilm
It’s slow, enough time to contemplate the themes and nuance.
And it’s so beautifully shot. It’s a vision.
#Movies #SundayFilm
February 23, 2025 at 1:00 PM
I absolutely love this film. Think I’m going to start my first rewatch this evening if I can manage.
It’s slow, enough time to contemplate the themes and nuance.
And it’s so beautifully shot. It’s a vision.
#Movies #SundayFilm
It’s slow, enough time to contemplate the themes and nuance.
And it’s so beautifully shot. It’s a vision.
#Movies #SundayFilm
I wrote my first poem since March last year!
About dissociating in my bedroom whilst the visiting nurse was taking 15 vials of blood from my arm.
About how nothing is the same as it was, and how life before seems like a mere mirage.
I’m normally shy about sharing, but I’m so happy!
#pwME
About dissociating in my bedroom whilst the visiting nurse was taking 15 vials of blood from my arm.
About how nothing is the same as it was, and how life before seems like a mere mirage.
I’m normally shy about sharing, but I’m so happy!
#pwME
February 22, 2025 at 8:56 PM
I wrote my first poem since March last year!
About dissociating in my bedroom whilst the visiting nurse was taking 15 vials of blood from my arm.
About how nothing is the same as it was, and how life before seems like a mere mirage.
I’m normally shy about sharing, but I’m so happy!
#pwME
About dissociating in my bedroom whilst the visiting nurse was taking 15 vials of blood from my arm.
About how nothing is the same as it was, and how life before seems like a mere mirage.
I’m normally shy about sharing, but I’m so happy!
#pwME
My carer’s not supposed to wash my hair, but she’s so super kind and did it anyway!
This bed hair wash basin is my new favourite possession.
I feel like a new person with my soft hair 🥰
It had been a long time!
Sometimes it’s the little things that make us feel more ourselves.
#pwME #MECFS
This bed hair wash basin is my new favourite possession.
I feel like a new person with my soft hair 🥰
It had been a long time!
Sometimes it’s the little things that make us feel more ourselves.
#pwME #MECFS
February 18, 2025 at 10:21 AM
Wandering through memory lane in my mind listening to the album Capacity by Big Thief.
It’s my soundtrack of the sun coming up after being out dancing all night in 2019. My last ‘healthy’ year, and what a year!
I saw the band play too, in Glasgow.
I’d love to dance again.
#pwME #MECFS
It’s my soundtrack of the sun coming up after being out dancing all night in 2019. My last ‘healthy’ year, and what a year!
I saw the band play too, in Glasgow.
I’d love to dance again.
#pwME #MECFS
February 16, 2025 at 1:26 PM
Assembling the hospital visit bag. Headphones and eye mask for the journey there and back, and sunglasses for the hospital lights. Thanks for your encouragement. I feel better having folk here who understand 🥰
February 13, 2025 at 11:36 AM
Assembling the hospital visit bag. Headphones and eye mask for the journey there and back, and sunglasses for the hospital lights. Thanks for your encouragement. I feel better having folk here who understand 🥰
For context on my last post on my heart rate graphs…
This is how much introducing electrolytes, beta blockers and having carers in to make my food and wash me has changed my heart rate output on an average day. Wild!
Visible app taught me I needed to find ways to hugely lower exertion.
#pwME
This is how much introducing electrolytes, beta blockers and having carers in to make my food and wash me has changed my heart rate output on an average day. Wild!
Visible app taught me I needed to find ways to hugely lower exertion.
#pwME
February 7, 2025 at 11:59 AM
For context on my last post on my heart rate graphs…
This is how much introducing electrolytes, beta blockers and having carers in to make my food and wash me has changed my heart rate output on an average day. Wild!
Visible app taught me I needed to find ways to hugely lower exertion.
#pwME
This is how much introducing electrolytes, beta blockers and having carers in to make my food and wash me has changed my heart rate output on an average day. Wild!
Visible app taught me I needed to find ways to hugely lower exertion.
#pwME
Look what an endo flare does to this M.E. body.
Weds is the flare.
Heart rate elevated much of the day, showing activity levels (light blue) even when in bed.
This level of exertion often drives PEM.
How does someone with M.E. and endo that flares 2x a month get stability?
#pwME #MECFS
Weds is the flare.
Heart rate elevated much of the day, showing activity levels (light blue) even when in bed.
This level of exertion often drives PEM.
How does someone with M.E. and endo that flares 2x a month get stability?
#pwME #MECFS
February 7, 2025 at 10:01 AM
My muscle weakness hack for the win!
Having these super light keep cups that I can rest on my bed table means I only need to lean forward a little to drink from the straw.
On even worse days, I can cradle the cup and drink reclined.
It’s cute too 😄 Coffee time!
#pwME #MECFS
Having these super light keep cups that I can rest on my bed table means I only need to lean forward a little to drink from the straw.
On even worse days, I can cradle the cup and drink reclined.
It’s cute too 😄 Coffee time!
#pwME #MECFS
February 3, 2025 at 12:49 PM
Could my brilliant ME/CFS friends possibly help me?
I’m wondering if my debilitating levels of muscle weakness are to be expected with M.E?
There are hours where I simply cannot walk as my leg muscles don’t work, can’t hold my phone or a cup, eat food, chewing is too hard…(1/2)
#pwME #MECFS
I’m wondering if my debilitating levels of muscle weakness are to be expected with M.E?
There are hours where I simply cannot walk as my leg muscles don’t work, can’t hold my phone or a cup, eat food, chewing is too hard…(1/2)
#pwME #MECFS
February 2, 2025 at 9:20 PM
