I’ve noticed that I have this rate of activity to recovery and it’s about 1:3
If I spend one hour out in the world I need three hours of rest and recovery to be back
to my baseline
A full day means three days
Now, if we apply this math to my trip to Los Angeles which I took at the end of January/beginning
of February
That trip was 10 days long
During that trip I pushed myself harder than I normally would and I was exposed to a variety
of stressors good and bad and there were new experiences and complications and all of those
things drain me so we can add an additional like week for that
And then that’s a full month to recover at least
I barely remember the drive home from the airport after that trip
I was done
I got in bed and I crashed hard
I slept for about a week
I was only really coming back to myself mid-March
But do I regret it?
Nope
I had a wonderful time
I spent quality time with people I love and I got to do and try things that I’ve always
wanted to do
So to me it was entirely worth it
And then it was my birthday!
My birthday is in March (March 20) I turned 28 this year
I didn’t do much but I did go out for dinner with Marvin and a very dear friend of mine
and that was very nice
And then it was April or as I like to call it Hell Month
April is always really hard for me and I know it’s the same for a lot of other autistic
people even though it really shouldn’t be
And somehow at the end of every April I find myself looking back and thinking “Wow, that
one was a doozy”
And now here we are
And what I’d like to talk about today which is rest and recovery
Some people can just go (allegedly they exist)
They don’t really worry about energy tokens or spoons or managing their activity budget
because on a normal day they can just trust their body will provide what they need to
do what they need to do
But people who regularly deal with illness or injury, who have chronic fatigue or chronic
pain, mental health conditions or any other kinds of disabilities (like myself) we have
a different normal
The amount of energy we have is limited and variable
We often can’t anticipate how we’ll be doing a month, a week, or even an hour from
now
When I was a teenager I didn’t yet have ME which is also known as CFS or Chronic Fatigue
Syndrome
But I was still autistic so I was working with limited mental energy and I had variable
functioning because of that
but physically, I could just go
I used to walk everywhere all the time and I didn’t worry about actually running out
of energy and not being able to get home because I knew that if I could sit down, hydrate,
maybe have a snack
my body would make more energy and I could get back
Now when it comes to physical activity and doing things or even just being awake my body
can and does just stop
My CFS crashes come on fast and there’s really nothing to be done but rest
And back to that mental energy thing
Simply existing while neurodivergent can be exhausting
Dealing with sensory input and overload, manually processing data, carefully navigating social
situations while also trying to monitor your own body language, tone of voice, voice volume
add “masking” or “passing” onto that and that’s additional stress
all while trying to do what you are there to do: to get stuff done and live your life
It’s a lot
We work hard
So to understand and support autistic and otherwise neurodivergent people you really
have to understand that and keep it in mind
Some people need frequent breaks or have big activity to rest ratios like me
Sometimes people have to retreat to a quiet or safe space for a while
People might have to decline invitations or leave early not because they don’t want
to be there but because they have to
And these things are often misunderstood
People can be offended by someone leaving a family gathering to spend time reading in
their room for a while because to them they feel fine socializing for hours or are even
energized by it
But autistic people can reach a point where they just can’t can’t anymore and pushing
past it can result in some pretty uncomfortable or unpleasant results like meltdowns or shutdowns
or just totally crashing and then having to cancel plans or activities in the future so
that you can recover
But the really important thing as you’re keeping that in mind is that it’s never
anyone else’s place to tell someone what their limits are
No matter how well you know someone or how well you think you can understand their experience
you must trust people when they tell you what they need through words or actions
That’s respect
They know their body
They know their mind
They know what it’s like from the inside
So even if it doesn’t make sense to you
Even if what a person can do is variable and changes day to day or hour to hour
Even if you just don’t get it you can respect it
And do not attribute to rudeness or disinterest what is actually explained by mental fatigue
or a simple need for rest
Speaking of things that need a rest
Avengers: Endgame
Everyone is talking about it and you might be sick of hearing about it but I have something
I’d like to say about it
Everyone I’ve talked to about the movie just assumes that I have seen it or that I
will see it in theatre soon
And that assumption makes sense if you know me
I am a big fan of superhero films and Marvel in general
But I won’t be seeing Endgame in theatres
I’ll have to wait until it’s available to watch in the comfort of my own home because
a three hour runtime?
And no intermissions?
And all the hype around how you don’t want to miss a single moment?
That is a lot of stress for someone with a disability that affects their bladder, blood
pressure, circulation and just ability to sit in an uncomfortable chair for three hours
without injury
Vilissa Thompson the founder of Ramp Your Voice! and creator of the #DisabilityTooWhite
hashtag wrote a great article about this for MTV
about the inaccessibility of Endgame’s runtime
the inherent ableism that people don’t really think about in movie culture and also #PeeMath
so I will link that article below and I do recommend it
And to finish off this vlog today I have a recommendation for all of you
It is the Xandri Corelel series by Kaia Sønderby
I may have not said any of that right (I’m sorry I hope I pronounced Kaia’s name right)
but I will link to the series and also list some trigger warnings for the first book in
the video description below
As of yet I’ve only read the first book Failure to Communicate (which I loved) and
I plan on reading the rest.
Failure to Communicate is a sci-fi novel set in the far future and it features a bisexual
autistic woman of colour as the protagonist
It’s an #OwnVoices novel as Sønderby is autistic and queer herself and aside from
being well-written and enjoyable to read it has the most sincere and affirming fictional
autistic representation that I’ve ever encountered (and I do read a lot)
When I’m done with this video I am going to film a proper review of that book Failure
to Communicate
And now it’s time for me to walk my talk and rest so that I can do a little bit more
later
Thank you so much for watching
I hope I gave you something to think about and I hope you have a wonderful day