- Hello lovely people and welcome back to my channel.
If you're new here, hi, I'm Jessica.
I make videos about disability, chronic illness,
and LGBTQ+ things.
Sometimes in a vloggy way,
because hey, that is my life and I'm living it,
and sometimes in more of a sit-down way like this.
If that is your jam,
or jelly for the Americans, then subscribe.
Thank you to BetterHelp for sponsoring today's video.
More on them later.
Today, we're going to be talking about pacing,
a tool that can help some people
manage their chronic illness.
Not sure if you have a chronic illness?
That's understandable; many people feel that way.
It's actually difficult to work out
whether or not you fall into the category,
whether you should be able
to call yourself ill and seek a diagnosis,
or if you're entitled to ask for help.
I mean... (gasps)
No, honey, you are always entitled to ask for help.
An energy limiting chronic illness, also known as an ELCI,
can cause symptoms such as physical fatigue,
mental fatigue, and pain,
and can significantly restrict your day-to-day activities.
People with an ELCI have a range of medical diagnoses,
and, while symptoms can vary and fluctuate,
the general impact on people's lives
is one of energy impairment.
Examples of an energy limiting chronic illness include
long COVID, ME/CFS, fibromyalgia, lupus,
chronic pain, respiratory failure, kidney failure,
inflammatory bowel conditions, sickle cell disease,
autoimmune conditions, neurological conditions,
endocrinological conditions, and rheumatological conditions,
and Ehlers-Danlos syndrome.
(whimsical chimes)
Hi, that's me, hence the hair toss.
Wait, do it again.
Ehlers-Danlos syndrome.
See, we got there.
We didn't, we eventually on the second go.
People with these conditions know
it's important to carefully ration their energy every day
in order to avoid aggravating our symptoms.
The UK's Family Resources Survey 2019 to 2020
reports that problems with stamina, breathing, and fatigue
are the second most common form
of impairment or disability in the UK.
(sighs expasteratedly)
But you might not know that
because it doesn't come with a very visible aid,
like a wheelchair or a hearing aid or a guide dog.
Instead it comes with spending a lot of time at home,
lying down, staring at ceilings.
I'm not kidding.
I had about a year and a half stretch
where I couldn't really sit up
and I got to know ceilings intimately.
They are not fascinating.
Having an energy limiting chronic illness
means you're generally restricted
from being able to participate in ordinary life.
And I mean, you can't really get out there
shouting about it from the rooftops
cause people only see you on the good day.
I say you can't shout about it from the rooftops.
I mean you can, it's called YouTube.
Hi.
So people with energy limiting chronic illnesses
have rights as disabled people,
although many people are not aware of this.
Like those people who give you snotty looks
for parking in disabled spaces
(strained laughing)
and then park on the lines right in front of a drop curve
because they're "only popping in to grab something."
Side note. Someone asked me on Instagram recently,
and if you don't follow me on Instagram,
you can find me at @jessicaoutofthecloset,
or @jessieandclaud, my couple's account with my wife.
They ask, "now you have Rupert.
Do people ever assume that you're parking
in a disabled space just because you have a baby?"
And the answer to that is, yes,
I can indeed feel the burning sensation
of being watched at the back of my neck, but I'm over it.
So in the UK, we have disabled spaces
for people with a blue badge
who have some kind of disability or associated condition
that gives them the right to park in that space.
And also, parent and child spaces,
for drivers who are transporting children
under 12 years old.
Both types of parking bay have wider boxes around
to accommodate either a wheelchair or a buggy.
But there's this kind of strange thing some parents do
where they start to park in disabled spaces
because they start to see
all of these bigger spaces as one thing,
and I'm choosing to be charitable here.
They're probably very tired.
So we now park in the parent and child spaces,
which are generally just as close
to the shop as the disabled spaces,
and thus they're full,
in which case we use the disabled spaces.
I mean, we just do that to make sure
that there are the maximum number
of disabled spaces available
because I wouldn't want to use one if I don't have to
because I have a child,
and not every disabled person has a child
which is kind of hilarious because the legality of
whether or not I could have parked
in the parent and child spaces
before having a child is a gray area.
Honestly, a gray area is what having
an energy limiting chronic illness feels like
because whilst our conditions themselves vary hugely,
as a group we have many things in common.
Which number are you?
All of them.
One, many of us go years without a proper diagnosis,
without a doctor even trying to look for one,
two, which means it's incredibly difficult
accessing benefits and other government support.
Three, but also, our conditions are often under researched
due to a lack of funding or interest
from the medical community.
Four, despite being often bedbound or housebound
and extremely isolated,
five, we're often dismissed
or told our conditions are "all in our head"
when we go for medical help.
Six, and even sometimes our nearest and dearest
do not believe in our conditions,
how they affect us, or our needs.
Seven, so of course it's pretty darn hard to get schools,
businesses, employers, and your local council
to make adjustments that would allow you
to participate more in society,
eight, which means you can end up feeling invisible,
but you really, really aren't.
You are here, you are seen, and you are alone.
So I made a video previously talking about exercise therapy,
the classic, "oh, you have no energy?
Just work out and then you'll have some."
Which you can watch by clicking the card
in the top left hand corner, or the link in the description,
and don't worry, this isn't that, it's okay.
Yeah, I've been there.
I've had those doctors, those friends, those family members
who have so kindly suggested that, you know,
if I just did the Couch to 5k,
I would not be disabled anymore.
I'm really not sure that's how disability works.
No one would be disabled,
and also that would be a much more popular podcast, but...
So, pacing is energy management
with the aim of helping you learn your limits
and thus maximize cognitive and physical activity
to a point that you are happy and comfortable with
whilst avoiding setbacks and relapses due to overexertion.
You're finding those limits and you are staying within them.
So you might think that pacing yourself when you're ill,
that's common sense, right?
But we are not talking about the kind of ill
where you take two days off work,
and you sit on your sofa
binging Married at First Sight and eating soup.
This is the kind of ill that lasts
for days and days and days on end,
and that, my friend, is wildly different.
It's also incredibly boring, massively boring.
Do you think the pain would be the worst thing
about chronic illness, or like the actual exhaustion?
And to be fair, that is pretty bad, but let's be honest.
It's the bone-grindingly awful repetition
that is the worst thing.
It's difficult to know how to look after yourself
when it's just all day, every day.
Creating an effective long term pacing program is not easy
or second nature to most people.
It requires a good understanding
of the principles of pacing,
and a commitment to making the whole thing work for you,
which just isn't as easy as it sounds.
To some degree, pacing offers a person with chronic illness
an opportunity to control the effects of their illness,
which is really, really great,
cause we often don't feel like
we have a lot of control here.
I'll be honest.
That's one of the things that can lead
to a real breakdown in a person's mental health
which is a really good time to talk about today's sponsor.
Today's video is sponsored by BetterHelp,
because on this channel, we value mental health
as much as physical health.
And let's be honest, poor physical health
can have a huge impact on your mental health.
When there aren't cures or treatments
for your physical disabilities
it becomes all about management.
And that day to day management, especially when it comes
to chronic illness and fatigue, it's hard.
And when it comes to mental health
it isn't about finding a quick fix.
It's about finding what works for you
and things that are applicable to your own situation
which is why I think
that BetterHelp is a wonderful, wonderful platform.
It's the world's largest online therapy platform
making professional therapy accessible, affordable
and convenient.
The website assesses your needs and matches you
with your own licensed professional therapist.
I love the ability to be able to tick boxes,
not just about yourself,
but also tick boxes when it comes to a therapist.
I would like a therapist
who identifies themselves as LGBTQ+.
That type of thing is so special
and unique to the BetterHelp service.
It's really difficult when you're doing IRL therapy
to find someone like that, especially if you're living
in a small town, but BetterHelp, with over 20,000
licensed professional therapists in their network,
there's probably gonna be one that matches
your incredibly specific need.
BetterHelp's main priority is to make sure
you feel as comfortable and as seen as possible.
With BetterHelp, you get timely and thoughtful responses
in a variety of different ways,
whether that's instant messaging, phone calls
video calls, journaling.
Plus, you can schedule weekly video or phone sessions,
so you won't ever have to sit
in an uncomfortable waiting room.
Don't have the energy to leave the house?
Well, it's okay.
BetterHelp means you don't have to.
You can go to therapy in your pajamas.
If you're interested in trying BetterHelp yourself,
I have a special offer for my followers.
You can get 10% off your first month
when you sign up using the link in the description.
Now, I mentioned earlier
that pacing does take a lot of self control and patience.
So when I was in my late teens,
I was struggling with energy after having a hospital thing
that went wrong with me when I was 17,
and then my energy just, like, crashed
because I'd had a hospital procedure that had gone wrong,
and they were like, "you'll get over this in a few weeks."
Then they were like, "okay, maybe a few months."
And then they were like "a year?
Might be something else going on."
And so I got sent to an ME clinic.
I wasn't diagnosed with ME, or I was.
I was diagnosed with ME.
Wait, I was diagnosed with ME.
I have memory loss, don't worry about it.
So (laughs)
So I got sent to this clinic, and one of the things
that they very much were into was pacing
and making sheets of your energy.
Sheets of your energy?
What does that mean?
Well, it was bullet journals
before bullet journals were a thing.
We've had to print out
an entire massive A3 sheet of the week
and then get a multitude of colored felt tips
which I was very down for
because love a good colored felt tip coloring in session
and coloring every bit of activity that we did
within the week in the different gradients of energy usage.
And this was every bit of energy.
And I was really ill at that point,
so like going to the toilet was a lot of energy for me.
Filling out this freaking weekly sheet of different colors
and trying to remember which color was which
was a lot of energy for me, but I had to do it.
You had to, like, color in every nap that you had,
color in every time you ate,
color in every time you, like, replied to a text
because that was mental energy.
But eventually, I believe, it did get slightly helpful
in helping me realize my limits.
And I didn't really have the energy that I
perhaps thought I did or hoped I did.
No, no, no.
I did stop using the sheets for a while
because I was like, "it's okay."
I know, I know I'm on it.
And when I went to university,
I went with my weekly time sheets again
so that I could fill out my colors and it would help me,
and my well, like, life had changed,
so I needed to know my different energy levels now,
and that university would be different.
And mainly I just colored it all in red.
(laughing) I was like, "I may be pushing myself too much."
So if anything, it helped me realize
that that was probably not wise.
And I went to doing part-time university.
So pacing, helpful.
The great thing about pacing is that
in time you should be able to do more than you would
because you start by only sticking within your limits.
And by staying within your limits,
you start to build a little bank of energy,
and then you slowly, slowly increase that energy.
And then you slowly, slowly increase the activity level.
Now I know, activity can be a bit of a scary word,
especially if you are in the bedbound stage
of chronic illness, and I've been there,
and people are like,
again I'm gonna use the Couch to 5k example,
when you're lying there in bed
and moving your arm sends extreme pain down your body,
and you're like, "oh my God, this is horrendous."
And I still have days like that.
People find that bizarre,
because obviously they only see me on days when I'm like,
"hi, hi, how do you do, how do you do?"
Clubbies not so much,
because obviously members of my Kellgren-Fozard Club,
by the way, if you'd like to join the Kellgren-Fozard Club,
you can by clicking the join button down below
But we do like a monthly behind-the-scenes video
where I'm much more like, "I'm lying down.
This is all I am up to today. Nothing's happening."
Did I sell that? Mm?
Because that's just kind of life with a chronic illness.
It is very, very changeable,
but I think I'm so much better now
at being able to manage my levels,
and I think a lot of that was pacing
and the understanding that my levels are changeable,
that each day I'm going to wake up and be like,
"okay, ooh, I've only got this much energy.
Okay. I've got to try and stretch it through the day.
How much is this gonna be worth?
How much is that gonna be worth?"
We've talked about spoons before,
the idea that different activities sort of cost
a different amount of spoons,
and pacing, in a way, is stretching those spoons
throughout the day.
So if you don't know what I'm talking about with spoons,
there's a video here in the card up here, up here.
And pacing also really helped me by coloring in.
I know. "Coloring in helped you, Jessica?
Really? Really? Did it?"
Yes, it did, okay.
By coloring in, one thing that I really learned
was the value of an activity.
So it's really easy to see, I'm ill,
I feel really tired when I stand up from bed
and I walk downstairs to go and eat dinner,
and then I walk back upstairs.
That's tiring for me.
Okay. Easy to understand. Downstairs, upstairs, exhausting.
But what I actually learned was that sitting at the table
for a prolonged period of time,
the number of muscles I had to use to stay upright
is actually pretty much on a par
with the physical activity of going upstairs, if not more.
Because at least when I was going upstairs
and really putting lot of energy and effort into it
there was an end point,
whereas the amount of sustained effort
that had to go into sitting upright at the dinner table
whilst also having my hands free to be eating
was so much more physical energy.
So I learned that.
I was like, "yeah, actually, wow, that's a lot."
So I started to think, like,
how can I reduce that energy load?
And then it made me realize another thing that's tiring
in the situation would be the types of food that I'm eating.
So a food that requires me to be cutting it up a lot,
that's a lot of energy as well.
Because here I am,
and I'm really putting effort into doing this.
Right? That's quite exhausting for me.
And I know, I know.
If you've never perhaps experienced this yourself,
it can seem quite a strange thing.
Like, "cutting up your food is really exhausting?"
Like yeah, actually, yeah, it really can be.
But if you've ever just imagined
like the sickest illest you've ever been,
if you've ever run a marathon, right,
and you've got to the end of it,
just passed the finish line, and someone goes,
"Brilliant. Here's a steak and a steak knife.
We need you to cut this up perfectly right now."
And you're like, (breathing heavily)
"Oh my God, oh my God, I just ran a marathon.
Did you see me? Did you see me go?"
"Yes, I know, but could you cut this up perfectly?
You've not finished until you cut it up perfectly.
Oh, you don't get your medal until you've done that."
You're like, "What? Oh my God."
Soup? Are you kidding me?
You want me to keep soup on a spoon?
I don't think so.
That's a lot of sustained effort.
That's going down.
And conversation, exhausting,
especially if there are multiple people talking at once,
perhaps about various different things.
Lower the energy load, shall we?
So I learned from pacing, from coloring in my sheets,
that I had to start thinking about physical, mental,
and emotional and also academic loads,
which is different to mental by the way
because mental can be things like,
"what clothes am I going to wear today?"
or "how do I reply to this text?"
or even like, "which thing do I grab?
Hmm. How do I get my arm to go over there?"
Academic is obviously like schoolwork.
So all four of those to me, I had to learn, were on a path.
And I had to learn that I needed to really balance those
within not just my week, but within my day.
And I needed to see really the value of balance and
that sometimes it's, it is absolutely fine to be like,
"oh you know what, actually, I walked a lot today
and therefore, I just can't have
this emotional text conversation.
No, this will be put on hold 'til tomorrow."
"I just cannot watch this documentary,
interesting historical thing that I find fascinating,
but now it's gonna be Friends for the 10th time,
exactly the same episode."
I think that over time just the awareness of my limitations
knowing that actually I did need to stick within them
gave me a lot of confidence as well.
It made me able to say to other people,
"actually, no, like, I can't do that.
That's just not going to be possible for me."
It made me feel quite empowered about my own conditions.
So often with chronic illness,
we feel like a lot of it's just
completely out of our control.
Like I still do not always know
what sets off my migraines, generally don't,
but I do generally know what makes me tired.
I'm like, "yeah, yeah."
And I'm not gonna say that, "oh, I've magically recovered."
No, I'm not. Never going to be.
I have an inherited condition.
It's not going away, it's not going anywhere.
But the point is, I'm definitely more able to cope
with my energy than I used to be.
That's kind of a recovery.
It's a life that I can live with.
I feel quite happy with myself.
Therefore, it's pretty good.
It also gives you the power to sometimes be like,
"I know my limits,
and I'm going blast through them, because I can,"
because some days it is super worth it, and that's fine.
If you wanna have a blowout day where you're like,
"you know what, it's my wedding.
I'm going to be ridiculously exhausted after this.
I can only pace myself so much."
You go for it.
You have that fabulous dream day that you want.
And yeah, you spend some time in bed afterwards,
but you do what you want to do.
So that's my experience with pacing.
Let me know yours in the comments down below.
And if you too are looking forward
to getting some felt tip pens,
I don't have to fill in my week, every week
with felt tip pens anymore.
Don't worry, Google Calendar does it for me,
still fancy colored and everything.
God bless.
Thank you again to BetterHelp for sponsoring the video.
That is spelt as all one word by the way, BetterHelp.
H-e-l-p, BetterHelp.
I know, British accent, sometimes it's confusing.
Remember, I have a special offer for my followers.
Get 10% off your first month when you sign up
using the link in the description.
See you in my next video. (kiss)
(upbeat cheerful music)