In today's video:
"What are those?" I hear you ask
What are those?
Exactly
She doesn't know
Hey loves! I have been procrastinating about making this video for an incredibly long time- which is just so unlike me!
Okay, there are three main reasons for that: (1) It kinda makes me sad to think about disabilities sometimes
(2) my disabilities are just part of me, kind of just knitted into the very fabric of my being
so it’s a bit strange to think of them as something other and pull them apart to discuss them
And (3) I think disabilities are really boring.
But I’m going to keep this exciting for you!
As I attempt to explain my disabilities and what the hell is wrong with me
And if you’re lucky a part of me might fall off half way through. Exciting.
Moving on; I have two disabilities -- conditions -- from which other symptoms come.
They’re both genetic, I didn’t catch them from anywhere and I can’t pass them on to anyone through contact. You’re safe.
It's okay.
They are
Which I got from my father, so it's called HNPP
Which I got from my mother
Which is also called MCTD
Which is an acronym I struggle with
which means any nerve outside of your brain or your spinal cord.
However it does include your cranial nerves and spinal nerves as well as their roots and the various things they branch off into.
These are the nerves that control sensation, movement and motor function.
In the most simplest terms
our nerves are meant to have a coating around them called the
this protects them much like electrical wire has plastic insulation around it
People who have HNPP are missing one of the two genes that control this myelin sheath and therefore our nerves are very susceptible to damage
and easily bruised or even torn
Just the slightest pressure, stretch or even repetitive movement on the nerve
can cause sections of the myelin to be lost which then means your nerves are damaged
weakened...
and palsies, which is basically just when stuff paralyzes
All of this means signals don’t get to my brain very quickly, it takes me an incredibly long time to process stuff and I have to be very vigilant with my limbs.
For example, my feet can freeze into little lumps and I don’t notice until I fall over because my feet haven't told me that they are cold.
Or… conversely, strangely, my nerves can be incredibly painful with just the slightest brush of fabric.
because they read the signs incorrectly and they think that is something painful
meaning bits of me that are paralyzed
can last for days, weeks, months or even one time year and a half
both my arms -- year and a half, paralyzed
There is no way of knowing when something will come back or the degree to which it will come back
My wrists, for instance, are still quite floppy because they haven't come back properly
whereas my elbows can just dance for days! They're good
whereas once they couldn't move
Next condition!
It can have arthritic, cardiac, pulmonary and skin manifestations.
I made it sound like it was so fun there! Manifestations!
MCTD causes chronic joint pain, hypermobility, muscle inflammation, pulmonary hypertension, random fevers
digestive issues, problems healing, fatigue, joint dislocation, swelling and…
Which is possibly the weirdest symptom that you have ever heard of.
It basically means your body tells you something is not right. But it does not know what…
As such, my immune system is terrible.
If you sit next to me and you have a cold, I will get that cold
If we ever meet up in person and you are a bit ill, don't let me hug you, okay?
I am a hugger. I will hug. don't let me hug!
Around 80% of people with MCTD will have problems with their esophagus
Personally, I find it really hard to keep food down there and sometimes I have difficulties swallowing.
That basically means, that sometimes my stomach is just like, "Nah, not today, not today!" VOM.
That's it. It can be there in my stomach for half an hour and then my stomach is like "Oh, I can't even be arsed, no."
80% of people will also have problems with their lungs. Hopefully not exactly the same 80%. Unfortunate.
Speaking of unfortunate
10% of people have neurological problems and I am unfortunately one of them
I can’t feel half of my face, I have cognitive issues...cognitive.
Thing of it like cogs, cogs in your brain
So if you got cognitive issues your cogs are quite slow
or sometimes they like, they miss one. Like, ooooh, they're gone.
When I get vascular headaches, which is basically all of the muscles across your head and all of the blood vessels, just start constricting in. It feels as if they are crushing your skull.
A steel skull cap on and someone is tightening it
and you are going to die
Sometimes I feel like my eyes are going to pop out on the front, pop. Secondary,
Um, an autonomic system is all of the things your body does without you thinking about it.
Mine doesn't do that, none
So basically, my body doesn’t regulate itself.
It gets really hot and then it gets really cold, and then it faints. If I didn't drink lots of Diet Coke, I would fall over every time I stood up.
That is because my veins don’t automatically constrict when I stand up, and they constrict because you need the blood to rush up to your head.
Mine does not do that, no
They stay open and the blood pools down to your feet
However, if you drink caffeine, which is a vasoconstrictor,
constricts those veins and the blood can get back up there
and you don't fall over hopefully. Sometimes I do.
Anyway, but at least now I get concussed less before than I did before.
It's worse if I have done something the day before
Or haven't got enough sleep
but also it can just happen for no reason. It just does its own thing...whenever, whenevs
which is very frustrating
Deafness!
I'm deaf!
I forgot about that
My doctors attribute this to a crossover of my disorders.
Because if you have a connective tissue... issue. Tissue issue!
the connective tissue in your ears
and then there are all these nerves
so you also have nerve issues
and then there is this fleflefle
that was my medical explanation: fleflefle. Fleflefle.
it's a good one
Seriously, talk about it with your doctor, he will definitely know what I'm talking about
Or she! Sexist! Sorry.
Yes, weak connective tissue means damage to my nerves which are unprotected, in my case.
It's also why I'm blind in this eye
And then I have
which is caused by my disorders because my body is trying to make itself better
All the time, and it's just not happening, poor thing.
Kind of annoyingly new things seem to keep going wrong with me, all the time, but they always have
That is my life
It's really horribly frustrating
Because you get to a point where you are like: we got this down
This disabled malarky, I totally know what I'm doing
Hahaha!Oh...
Then you are just hit with a new symptom!
Gonna try and learn to deal with it all over again
If you’re watching this video because you or someone you love has just been diagnosed with one of these conditions
then the one thing that I have to say to you is: it’s going to be okay.
As a teenager I had all of these big plans about how my life was going to be, but then I paralyzed both of my arms for a year and a half
and had a medical procedure that went wrong and spent two years going in and out of hospital.
And suddenly it was all very different
It took me twice as long as everyone else to do my A Levels
that was bloody hard!
'cause I had to lie on the floor in a darkened room, dictating whilst someone else wrote my answers
But I did it!
I was determined to go to university and I did.
I was determined to find someone who would love me regardless and I did.
It's going to seem like such an uphill struggle after your diagnosis
It really is, it sucks and I am sorry about it
but this is who you are now, this is a part of your life
You just have to fold it in
Blend it in there, find the fun
find what makes you happy, give yourself a break but keep achievable goals and just go for them
You'll be ok
Everything that you now achieve from here on is going to feel so much sweeter
and it's going to feel so much better than anything you've achieved before
Yes, some days all I do is vomit
Yeah.
but now, I’m married, and I own a house and I have these two little doggies who love me so much and who I really, really love
I have this whole future that I did not think was possible
I thought I had to get better
and be 100% healthy before any of that could come my way
but that's not the case
You adapt to your new life
But also your dreams and your goals adapt to you
I'm really proud of how far I've come and
whatever has happened to you, wherever you got a disability
or just been some really bad life shiz
It's going to be ok! Just be proud of yourself, look at what you have already achieved
You can do it!
I believe in you, so...
You'll be alright
Feels a bit weird now to be like: like, comment and subscribe!
I don't know...
Do what you like...