Hello lovely people!
This might be a video in which I cry but please do not worry about it. I'm just in
exceptional amounts of pain so don’t panic, it’s just you know- LIFE with chronic pain…
It’d be how it’d be. Moving on!
Today’s video it’s about my face. And how much I hate it.
- currently
And I don’t mean in the ‘oh my god, I’m about to be a parent,
is that a wrinkle I see?’ kind of way. God, I wish it were that simple…
Because no, this isn’t cosmetic, Facetune won’t ‘help it’
- it doesn’t ‘help’ anyone
And no amount of loving myself will fix the problem either.
Because it bloody hurts!
Every time I eat a meal I have to be painstakingly aware of every bite,
because as soon as I stop thinking about my jaw and holding it in the correct position-
SMASH! It’s out of place and my teeth have crashed together!
It’s like being punched in the face. By my own face!
Why is this happening? Why does my jaw dislocate from my skull on one side
and why do I have this horrid sensation of empty pain right in front of my ear
(ever twisted your ankle? You know the feeling when you don’t move it? Not the sharp ‘ouch’
pain when you move it, the ‘uuuuugh’ pain when it’s just hurting all the time)?
That’s because I have Ehlers-Danlos Syndrome and
conveniently May is EDS awareness month, so let’s talk about it!
- Also, also-
For those of you who have been paying attention in other videos and playing
the ‘has Jessica’s face changed’ game: yes, getting botox in my jaw just before Christmas
DID help my jaw but it wore off much faster than my doctor expected it to and I’ve been
waiting for my second injection which was meant to be three months after but… covid.
We’re jumping ahead of ourselves though! Let’s get back to the basics.
Let’s get back to the basics. For those of you who don’t
know, what even is, Ehlers Danlos Syndrome and why does it make my jaw fall off?
Well, The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be
inherited and are varied both in how they affect the body and in their genetic causes.
- I’m not kidding, there is absolutely no point in ever trying to compare. Please do not panic if
your symptoms and my symptoms do not match up even though we’ve been diagnosed with the same thing,
it’s not anything to worry about, it’s just that it’s a very variable thing!
Bodies. They be weird sometimes.
EDS, as it’s generally known, is generally characterized by joint joint hypermobility
(joints that stretch further than normal),
skin hypertension (skin that can be
stretched further than normal but mine is not actually that squishy),
and tissue fragility.
You can click the link in the top left hand corner of this video
right now to watch another of my videos, which goes further into depth about EDS but in brief:
I can... Did I just pop my thumb out? Yes. Yes I did. Should have not done that?
You know how sometimes you got days? Today is not my day.
Last night I managed to fall over and I managed to hit my face on
my foot. I kicked myself in the face. ANYWAY.
The Ehlers-Danlos syndromes are caused by different genetic defects in collagen. Collagen
is one of the major structural components of the body. It’s a fibrous protein and used as a
tough building block in the body- essential in both strengthening connective tissue
(e.g. bones) and providing flexibility where needed (e.g. cartilage).
People with EDS can have weak collagen or weirdly shaped collagen. This impacts our skin,
muscles, skeleton and blood vessels.
And… yeah, it can really make your jaw hurt!
Just gonna hold it there.
Mouth and jaw structures are affected differently in the various types of
EDS… obviously. Now, as you can imagine, your jaw moves A LOT:
we eat, we speak, we yawn, we drink, we laugh, we kiss, we apparently chew gum
- which, in all honesty, I’ve never understood as a concept.
I’ve never GOT anything from gum chewing but I love learning from other people so please
tell me your gum-chewing love story in the comments below.
Mouth and jaw symptoms are pretty common in people with all types of EDS as there is a lot going on
in this area: a lot of blood vessels, gum tissue, nerve tissue, bones, teeth, tendons, ligaments,
it moves a lot and it’s often at risk of injury from foreign bodies
which it then…you know, takes forever to repair.
Case in point: this is not a freckle. I fell over three months ago and
scraped my hand on a wall and now I have this random dot on my hand.
[Painful groan]
Pause to hold my jaw on-
[elevator music]
Right, let’s pretend I’m a doctor [puts glasses on] wow,
it’s almost like I’m a real one instantly (!)
- technically I’m always a doctor because I have a PhD
My wife says it isn’t real because it’s only an honorary one but she’s just bitter because
she has an actual medical doctorate and a profession and sounds like a grown up
and midwives' faces don’t say ‘what the hell is that?’ when she tries to explain her job.
- definitely that.
Let’s pull up a diagram of the jaw joint! Golly, that’s complex!
The temporomandibular joint or TMJ and its muscles are also associated
with functions of the head and neck, they don’t just work independently,
so keep that in mind as well. An overly mobile TMJ is linked to other overly moveable joints.
And of course much like any joint in EDS, the TMJ often comes out of place.
But this is worse!
Because I can strap my arm up. I have a powerchair.
My wife is pretty good at popping my hip back in place- admittedly hasn’t tried
it since being heavily pregnant but knowing her she’d give it a good go!
But when it’s your FACE. That you use to freaking EAT and TALK-! It’s just the WORST.
- not sure if you’ve quite noticed but I do have rather a habit of doing that(!)
My jaw does relocate pretty easily once it’s been overextended but it causes a
lot of pain that then limits the mobility. My muscles, particularly in my neck on that side,
tend to contract uncontrollably in a spasm and limit my ability to eat.
To the extent that once I’ve injured it my jaw is stuck and I… need someone to…
remove the… you know… whatever I was eating.
Oh yes,
It’s 100% glamour, 100% of the time here.
Pause to hold my jaw in place. Glamorously:
[elevator music]
‘Weird’ jaw opening and chewing motions can be diagnostic of jaw joint disorder,
otherwise known as temporomandibular disorder or TMD. (Which is a wonderfully long word)
In this case, ‘weird’ is defined by such symptoms as:
(i) the jaw stuck to the side; (ii) limitation of opening;
(iii) inability to chew; (iv) pain in front of the ear, yeah no kidding;
(v) headaches in the temples or side of the jaw; (vi) tooth pain;
(vii) inability to turn the head and/or neck; (viii) inability to get the back teeth together;
(ix) fullness, itching, or pain in the ear(s); (x) “popping” or grating with movement of the TMJ.
Of those my main symptom is probably: ‘over this’.
I used to be mildly bothered that my face is unequal and I probably am not going to
be posting lots of pictures of the right side of my face any time soon but really…
I’ve been making videos for five years, my mouth has been doing this
weird, slanty thing for the majority of that time. Clearly I don’t care that much.
- says the girl who harshly parts her hair to cover the bad side.
It’s a vintage thing! Also I’m blind in that eye so it just makes sense!
- psyche!- it doesn’t even cover the ‘bad’ side, it just makes sure that the
overgrown side that I don’t like has to be turned towards the camera and thus blends in.
Not that I’ve put any thought into this.
- not at all.
[cough] ahem!
In all honesty though. I just want the pain to stop!
Which is what I sob-yelled at my GP. Who directed me to the NHS website, which told me to:
DO:
eat soft food, like pasta, omelettes and soup
Because clearly I was reaching for the musli! [holds jaw]
take paracetamol or ibuprofen
hold ice packs or heat packs to the jaw, whichever feels better
Not having a jaw.
massage the painful jaw muscles
try to find ways to relax
[stares into the camera with the existential angst of impending parenthood]
DON’T:
do not chew gum or pen tops
Who is doing that?! Who regularly dislocates their jaw and yet continues to choose to actively chew
when they do not have to?! I barely want to put anything in my mouth that requires one chew!
do not bite food with your front teeth
I didn’t get this one at first but then I tried to bite a chicken wing-
- I know. Don’t ask. Foolish.
And fully unhinged my jaw on one side. Had to get my wife to pop it back on.
do not yawn too wide
do not bite your nails
do not clench your teeth – apart from when eating, your teeth should be apart
Which is hilarious because I can’t actually get them back together so...
do not rest your chin on your hand
Which is sad because that’s how I get my, admittedly very tiny, relief!
- ugh! I cannot with this!
None of this speaks of long term relief however and that’s the real crux of the matter.
What, if anything, is the point?
- sigh…...
I did find a fix though. My dentist -slash wife- don’t worry,
I didn’t marry my dentist, I dentist-ed my wife (although I don’t think it’s actually
against the rules to date your dentist?) referred me straight to the maxillofacial
department at the local hospital who took one look at me, said ‘yep, your face is wonky,
this bit is too loose so this bit is working too hard, I’m going to inject some botox
into the big bit so it calms down and the other side has a chance to start working’
I know, I already covered this in another video, I know but… this is an
update! Probably should have said that at the start… You don’t need to have seen that one.
Is this even an update?!
So yeah, had the botox in December. Gave me a bit of a migraine I think for five days.
Then it worked pretty well for 2 months and I felt like the mouth
thing were I very much talk out of one side of my mouth.
But it definitely did help this side of my face calm down and this side of my face start to work.
Around my period I get, all of my joins get a lot looser. It's much harder to deal with.
My jaw is much worse, I tend to wake up in the morning and be like 'oh fun times,
my face is in agony because my jaw dislocated in the middle of the night'
I mean like, it subluxes so it kinda comes out and comes back in a bit, it doesn't fully dislocate,
not in a way that sometimes does when I'm EATING. Anyway.
So I wake up with a really painful face.
And it didn't do that for 2 months which was great and then the third month
was very much like 'oh this is starting again, ok, this botox has worn off.
But the hospital told me that I'd get my appointment again in 3 months time but golly,
I haven't heard from them.
Claudia was like 'well we should just wait because they will send you a letter'
and they did not sent me a letter.
And then it got to the 4th month and they still had not sent me a letter.
So we contacted them and they said 'we'll book you an appointment but it can't be for another month'
and I was like well golly that's a seems far away.
And then a few days before that appointment they said-
'I'm sorry we are gonna have to cancel it
or else you can be seen at a different hospital that's half an hour away'
and we were like ok, well guess we'll be seen at
the different hospital then. Why would we say cancel it?
So they sent us to the other hospital which you can see in my 'I dressed like a princess' video,
and we went there and the lady there was like-
'oh this isn't my area I don't even do botox. I'm referring you back'
And I was like 'so you are not going to put botox in my face?'
'You'll need actually a check up before anyone does that'
So then I had to wait another 4 weeks, Christ! After all now I have to wait 4 weeks for that.
I must have a migraine?
4 weeks after that had go to the previous doctor who did inject my face
but that is 1 week before the baby comes. and she might not inject my face, she might
just look at my face say 'yes I will inject you again, come back later' and I'll be like
'aha...how?'
Because you might not have noticed lady but, this might be an overshare but I don't drive.
I got here cause my wife drove me.
That's not gonna help my migraine.
Yes so I'm rather panicking because for some reason
everything in my life now has a. start and end date and I've decided that this baby is...
this is it. Everything in my life needs to be completed by the date of the baby being born.
Which I'm not sure that's the case, pretty sure people do continue to
live a life after their child is born. Do go on to do things.
But I feel a lot like everyone around me
has kinda told me that, well not everyone around me that's unfair,
But a lot of other people, people who already have babies,
have told me that I won't really be able to do anything?
Wow this is not what this video is about. Jeez.
You know the nice thing is, I kinda set up my channel so that I can make videos
for basically younger me? So I can be like 'hey, don't worry, when you grow up
life is fine you can live and do fun and amazing stuff and be disabled and it doesn't
mean what sad life the books and the movies say'.
'You can still go on adventures and fall in love and be a parent and do it well'
So I guess that's the next stage but I kind of have to do it first so I gotta live it first so...
This video is about my TMJ. Pain in my jaw and the fact that I would very much
like some more botox injected into my face.
Subscribe if you enjoy more videos like this!
If your jaw hurts, my jaw hurts too and I understand your pain.
That was pretty uplifting! It's fine!
Today's Kellgren-Fozard club question is from Anna Jackson who says-
'Jessica do Quakers have baptisms?'
Quakers do not have baptisms we tend to have a welcoming into the local meeting. However
my father was not a Quaker when I was born and had been brought up in the Church of England.
So I also was christened in the Church of England and that is why I have Godparents.