This video is sponsored by Lauren's Hope: Medical ID, which I will be telling you more about at the end
If you are new and very confused about why this video features a girl lying on the floor...
you have a lot of videos to watch.
But the tl; dr of the situation is:
Hi, I'm Jessica.
I'm disabled; I have a thing called Hereditary Neuropathy with Liability to Pressure Palsy
with Mixed Connective Tissue Disorder which gives me a thing called Postural Orthostatic Tachycardia Syndrome
And that's the short version.
I made a video explaining POTS and I will link to it down below in the description
and also in a card up above.
But, to sum up how I am feeling right now:
"awful" is a good word, obviously.
I feel incredibly dizzy, and I have no blood in my brain
and my heart is beating at twice the rate that it should
which is great.
Also I feel like this kind of pressure building behind my eyes that wants to shoot out
- which isn't fun, but I imagine would look quite interesting.
So today I am going to be filming from the floor.
As you can probably tell already, I am a very chirpy and optimistic person.
My glass is always half-full.
Every cloud has a silver lining.
The sun will come out tomorrow.
Maybe not the last one.
No, because there is sun in every day.
You just have to look for it.
I don't even know where these things come from.
It's like there's a cheese factory inside my brain.
I annoy even myself.
I can make any situation into a cheery learning moment.
It annoys other people, but I do like to think of it as a gift
because of course I do.
Partly, I was just born with an innate optimism.
But, also, some bad things have happened in my life.
I mean, really bad.
I'd be lying if I said that every moment had been wonderful
and I'd been able to see the light at the end of the tunnel
because that's just not true.
When I first started to have really bad symptoms
and I was spending a lot of time in hospital,
and then I had a medical procedure that went wrong,
it got pretty dark.
It was pretty sad inside my head for a while.
I've also always been one of those really empathetic people
who just soaks up everyone's emotions around me
and feels all of the feelings all of the time.
It's not really great when you're in hospital
and people around you are all panicking about whether you're going to make it or not.
Their upset fed into my upset.
I became iller and iller to the point where I had to spend two years lying in my bed
in the dark
with no light, no sound, and no touch, because those things brought me incredible pain.
Now you would think that those things would drag me down even further
into the dark depths of my minds
but no.
Instead, I used that time to write many Buffy and Faith fanfictions in my head
and also many queer books that I am now actually putting onto paper.
But mainly I used it to create some very strong mental defenses.
These are the foundations in my brain now
and I ought to share these coping strategies in case one of them can help you.
Number one:
This is the most important one, so I am putting it first -
and that is self-love.
Yeah, I know, it can sound really difficult and really hard,
but the bases of self-love is self-compassion.
You have to acknowledge that hard stuff happens and it is totally OK
to have bad reactions to those things.
You have to cut yourself a break.
Know that you deserve the warmth and the love and the kindness
just as you would give to someone else who was in the same position.
Don't be too hard on yourself.
You can put this into practice by using affirmations
- I know, it can sound a bit silly -
but, genuinely, sometimes look in the mirror and be like, "Well done!"
"Well done, self, we got through today and you killed it. Good job."
Even if, you know, your day was literally just you got out of bed and then you made it to the toilet
and then you came back to bed.
Excellent!
You did it. Well done.
Praise yourself for the things that you have managed to do; not the things that you think you should've done
but didn't.
Also, I used to write myself positive notes
when I thought I had done well, genuinely.
I used to send myself cards.
I mean, that is also helped by the fact I have a terrible memory
so I didn't always remember writing the cards.
That gave me extra joy when I opened them.
Number two: forgiveness.
This sort of ties in to the first one.
Forgive yourself
for what has happened,
whatever it may be.
Forgive yourself for the part in it; forgive your body for not working.
If you're struggling with someone else because you've got into an argument with your friend,
forgive yourself for the part in it and forgive your friend
because holding onto resentment does nothing but bring you harm,
and we're trying to avoid that.
So, you can recognise what has happened,
you can acknowledge your feelings -
good feelings; bad feelings; whatever your feelings are
- and then you can commit to letting go of those bad feelings.
It's what I do.
If I ever feel like someone has done something that upsets me
(and by "someone," I mean my own body
or a human being),
I try to use person-centric language.
So, "I feel..."
Like, "I feel that what happened was...
blah blah blah."
Rather than, "You did this."
"You have upset me."
Does this make sense to you?
Basically, holding onto negative feelings
does nothing to punish the other person;
it's only punishing you
- especially if that "other person" is your own body.
Forgive. You don't have to forget.
You just have to forgive.
Number three: change the narrative.
This is a bit of a tricky one.
This sort of goes along with the 'glass half-full' way of thinking.
Best way of doing this was to use a thing called expressive writing.
I don't know if you've ever heard of this.
This is where you give yourself an allotted time period
and you sit down with a pencil and paper - maybe it's twenty minutes -
and you just write.
Not on a topic; you don't try and pick anything.
You just follow your thoughts
and you just write and write and write and write and write for twenty minutes.
It doesn't have to be perfect; it doesn't have to have good grammar or sentence structure or paragraphs, no.
You just write whatever you're feeling; whatever thought comes into your head
and then you can read it back over
and see what you've said.
And I find that it really is a helpful way
to recognise negative thinking patterns.
And then you can look at them and you can use that wonderful word:
So, you look at it and you're like, "Oh, this terrible thing...but!
How could I turn this around?
How can I take this negative thought
and instead try and make the best of it
in order to help myself?"
Once you've recognised the problem -
basically, you can't do anything until you have recognised the problem.
Number four:
I don't really like calling it "mindfulness."
I hate the word mindfulness.
What's a better word than that?
OK, number four:
be present.
This is recognising what is around you;
taking a moment; taking some stillness;
being calm;
not letting yourself get too caught up in a situation.
This would happen a lot. I would find that I would start thinking about, "Oh, my God,
what about the future?
What if I'm still this ill in five year's time?
What if I'm still this ill in ten year's time?
What if I never meet anyone and I never get married and I never have children and I never have a career
and I'm never anything and I'm just stuck in this room forever?"
Mind blown.
Yeah.
Not great.
So, instead, if I felt myself starting to spiral a bit,
thinking about the future,
I would've said: bring it back to today
"OK, what happened today?"
"How was today better than yesterday?"
"How was today better than last week or last month?"
"What have I managed to achieve so far?"
Look at all the great things that you're doing right now
before you start panicking about all the bad things that might be in the future.
This also applies to the past.
Don't live in the past.
Don't think only of past failures.
Think about the cool stuff that happened in the past
because that great stuff is gonna happen again in the future.
Number five:
face up to your fears.
I know I just told you not to worry too much about the future, but right now
this is more facing what you are afraid of this very second.
Repeated slow exposure to things that bring you fear
have been shown to decrease anxiety and worry.
So, obviously don't do this if you are terrified of crocodiles.
Don't slightly, one little bit at a time, put your hand closer and closer and closer to the crocodile's mouth.
That's not a great idea.
But if your fear of something is stopping you living your life,
then that's something that needs to be overcome.
The best way to do this is with small steps; short tasks;
and constantly be getting feedback from the people around you
who can give you affirmations of safety.
That it's OK - this thing is scary for you right now,
but it will not be scary for you next week when you try it again
because you've already done it
and it didn't go wrong.
It can also be really great in these situations to team up with someone else -
whether they have a fear of a completely different thing
or no fears at all!
You can face the thing that you're scared of
and they'll be there going, "Oh, no, that's not scary at all"
"Oh, crocodiles? Pfft!"
"I mean, if you want to talk about marshmallows - that's terrifying."
And you'll be like, "Um...marsh-marshmallows are OK."
"Shall we, like--OK, I'm gonna put a marshmallow vaguely near you and we'll just work up to the touching of a marshmallow"
Those are my five resilience pathways.
There you go.
That sounds fancy, doesn't it? "Resilience pathways."
They're the things that work for me.
They're the things that work for me, and hopefully you can take a little bit from them.
One of the best pieces of advice that my mother ever gave me
was a little motto to live by.
Because I'm one of those people who wants to do absolutely everything
all of the time
and help people - help everyone!
I would be the person on the plane who would put someone else's mask on, and then DIE.
So the thing that she told me was to be kind to myself and to use the motto,
"Will doing this bring me health, wealth, or happiness?"
If it does not, do not do it.
Do not stress yourself out doing tasks that you don't actually have to get involved with.
There you go. That is how I stay positive.
I really hope that this has helped you, and you can put some or all of these into practice in your life.
If I could give you just two very clear lines to take with you,
they would be: This, too, shall pass
- which is something that I say to myself all the time
when I'm in my worst pain.
It means that you have been through bad things before.
This is no different.
This, too, will end.
And the second one is you are never alone
because it's true.
No matter what it is you're going through; no matter what it is you're feeling,
there is someone else in the world who is also struggling with these things.
There is someone else out there who understands completely how you're feeling.
You are never alone.
I swear one day I shall put those onto bracelets.
In the meantime,
one of the most important ways that I cope mentally with my disability and the chronic illness it brings me
is by staying true to myself.
And what does that inner Jessica like? Sparkly things!
Did I just twist my--I twisted my wrist and not the bracelet.
Ay-ay-ay.
When I was first diagnosed with my disability ten years ago,
absolutely everything that related to disability was, to put it kindly,
hideous.
Now, we have great companies like Lauren's Hope making things that are accessible,
stylish,
and life-saving.
The company created the first interchangeable medical bracelet in 2001
when the company's founder, LeAnn Carlson,
made one for a thirteen-year-old girl called Lauren
who had type 1 diabetes and refused to wear her medical bracelet
because it was hideously ugly.
She also felt that it drew attention to her illness
and these two reasons
stopped me from wearing medical bracelets for quite a long time.
I mean, I'm sure I'm not the only one who's guilty of that, right?
Please let me know you are also guilty of this.
Lauren's Hope makes medical IDs that are attractive, stylish,
and suit whatever mood you are in today.
I am wearing the Golden Filigree Medical ID ensemble
and, as you can see, it is gorgeous.
Their sets make really great gifts for the people in your life who are very reluctant to wear their medical IDs
because they believe they're hideously ugly.
Even though they literally need it
to save their life.
Part of my condition includes fainting and brain fog
so if I have a problem when I'm out and about,
it is highly likely that I will not be able to communicate what is wrong with me.
The bracelets and necklaces will do that for me.
But they're also not just for people who have chronic illnesses
and disabilities.
Medical IDs are also vital if you have allergies to things like foods,
and drugs.
If there are developmental difficulties involved;
if you have a pacemaker .
Even for people with extreme stammers who can't communicate their needs clearly.
Lauren's Hope also sent me this beauty.
The Rose Gold Feathered Medical ID
and, honestly, I'm in love.
I'm sure you've already seen it on my Instagram,
but it has changeable panels
that mean you can change the engraving of your ID
without having to change and get an entirely new bracelet.
Absolutely great if you're the type of person whose medication changes often
or if you have a condition that in some way develops.
It's also super sparkly
which just feels really 'me.'
Lauren's Hope focus on wellness wear,
meaning they accentuate the positive and give people choice in their style.
A disability or chronic illness is just part of who you are
and it should fit with your individual style.
They ship all over the world and are a really helpful company
so if you have any questions, you can just ask them,
and they will get back to you with a wonderfully cheery response.
All of the info, including links to their website and direct links for the pieces that I've shown you so far,
will be in the description down below.
Thank you to Lauren's Hope for sponsoring this video.
You are great.
Now, if you would also like to get involved and sponsor this channel,
you can do so by clicking on the link down below;
by clicking the link in the description and finding out more about the Kellgren-Fozard club
or by just clicking the SPONSOR button.
I hope you've enjoyed this video and that it has been helpful for you.
Lots of love, and I shall see you next time.