No
Sadly Claudia is pretty ill today. Claudia: Bit sniffly
I mean she’s got a sniffle
I’ve got man flu, pretty much
I get like the tiniest headache and I'm like "I got a headaaaaache, I need paracetamol!"
It's the worst thing ever, no one understands my pain
Jessica's like, "I've had a week-long migraine." It's alright. You made me feel better because you got me some nice jewerly.
Jessica: I got her some jewelry! Yeah, from Ana Louisa. It's fancy.
Claudia: It's got like fern like striations and
it's like this really nice kind of goldish colour
Anyway, it goes very well with my jewelry that I already have and my watch.
I think it looks like feathers.
Yeah, or like feathers. Yeah, and it's like twisted, it's cool.
You get to look fancy in two days time because it's Clara and Evelina's wedding!
Yeah, I mean that's what this video is really about
It's not
I thought it's about how I saved your life
Yeah it is, that is actually why we decided to sit down to talk about this
Yeah, so when I met Claudia, I think it's safe to say I wasn't in the best place in my life
I got diagnosed with having a genetic
neurological condition when I was 17
because I had this big like health crisis episode where I paralyzed both of my arms
That was great.
Claudia: Yeah, pretty terrifying.
Yeah. Yeah. So they diagnosed me and were like "you have this thing called HNPP
it affects all of your nerves; it is--" what's that word?
Claudia: Oh, um progressive.
Jessica: Thank you. It's progressive
Claudia: Progressive doesn't mean it goes down. It means it gets it gets worse.
Sorry. Yes. Yeah so they were like, "it gets worse,
Bye." That was pretty much it.
Because I turned 18.
Yeah and then the pediatric department, with the children's, like, bit, were basically like "Oh you're an adult now, bye-bye"
And then you like were ill for a while and then BBC3 action happened.
Jessica: Oh yeah I was on BBC3; I was on a modelling show for disabled girls...
Claud: Which just made you probably more ill
Jessica: You don't need to think or talk about that ever
Claudia: No, we'll just skim over that
Then you went to university Jessica: yeah I got worse
Claudia: And university isn't good for anyone's health.
As a generalization, university students
are kind of just looking--like can only just about look after themselves,
let alone someone else. And they just like want to prioritize going out, drinking, and making friends
Very fair, that you don't help the disabled kids.
learning how to boil eggs and things
you know how to work--turn on a washing machine? Jessica: Alright, show-off!
Claudia: She didn't until I met her. Anyway.
Jessica: Jesus. I wasn't in a very good state. I wasn't in very good condition.
But when I met Claudia, that all changed!
And she'd agreed to take this
heap of
nonsensical rubbish on.
Aww, that's a bit harsh.
Jessica: I think it's fair
You had like one diagnosis for yourself, which was this HNPP, and you're deaf.
And I was like, "Ah, ok, is that related to your HNPP?" and you're like, "Yeah, I think so.
they weren't really clear about that." and I'm like- okay
Jessica: No one told me.
Also I went blind in one eye and no one really explained that to me either
Claudia: Also it's just it's weird because it's hereditary neuropathy with liability to pressure palsy
So I'm like "Okay hereditary. So who else has it in your family?"
And you're like, "Oh well my dad has it like really minorly"
I was like, "Oh ok, so what are his symptoms?"
And you're like, "He just can't feel the ends of his fingers so much,
but that's come along in old age."
And I was like "Oh, okay. And is he deaf?"
And you're like, "No, he's just got a bit of hearing loss now." I'm like, ...huh.
I was having quite a lot of health crises, at the time, when we met.
Yeah you had like a full-time carer
that came in everyday to your house and like got all your shopping for you,
made sure you went and had your morning nap
like Jessica had used to have to have a morning nap every day
like you'd be up for about three hours and you couldn't sleep more than six hours at a time
Jessica: No, I couldn't
Claudia: You used to drink like liters and liters of like caffeine free diet coke
more on that later
Buckets-loads of like frozen spinach that you would microwave and
leeks! Just, like, so many leeks.
Like literally your fridge was just filled of caffeine free coke, leeks, and
frozen spinach. Oh and frozen berries, and soya yogurt.
and that was, that was literally your entire diet
I went to a dietician. Those were the things she said I could eat.
Claudia: That was literally your diet.
Jessica: So that's all I ate.
And then she was being sick like every day. Despite this, like, very minimal diet.
I was just like, "This is weird."
Oh and then you ate all those like really horrible like alternative sauces, like the mayonnaise
which were all made out of like--what the hell was in that stuff?
and she used to drink like loads of cider vinegar
Basically, she was a delight!
Leeks and cider vinegar breath like every morning.
I was like, "Oh, hi darling..."
Jessica: Someone told me that that was good for me.
Claudia: Kind of I just accepted, she's, you know,
she'd been diagnosed when she was 17 and I was like, "Well, this is your diet, you obviously know what you're doing"
Within the first four months of us dating, actually three months of us dating
I think we ended up in A&E like twice
I think it's like three times you had like two like random crisis episodes
Jessica: Yeah, middle of the night have to call an ambulance type thing.
Claudia: Yeah, well you basically just couldn't get up, had like absolutely no energy. You've been throwing up like all day
although there was that time where you just hadn't been for a wee for like 48 hours and I was like
This is not right and then we went to A&E and I realized why you don't like it
Yes, because they take you there in the middle of the night
They just leave you in a corridor for hours and hours and hours. They give you no water. No pills
Nothing, and then they're rude to you and then they send you home and nothing they do nothing to help
Yeah
one time we went they basically were talking to Jessica as if she was making it all up and she was a hypochondriac and
They didn't believe when I was like, "She has HNPP," and they were like, "Well, we don't know what that is"
I'm I never heard of that and they were like I was like well, Google
Yeah
and I was like what you should know more about it than I do you like but that's what she has and they were like
Who's her overseeing consultant? I was like well, she was diagnosed in Bristol when she was 17 and they were just like mmm
They were just bit like whatever and they pretty much said in other words that they had more proper emergencies to see
Yeah, and I was like all she needs is some like IV antiemetic
So she's not sick anymore and some fluids and then we can probably go home.
Yeah, I couldn't stop vomiting for hours
Yeah, she's getting severely dehydrated and feeling and her migraines getting really bad
Well, just wait there and they literally just left you in like a bright--
Yeah, right
bright lit horrible little curtain section and me as well and it was so hot in there
And I couldn't leave you. Ugh, it was awful!
I also my migraine is so bad and awful and I couldn't open my eyes
because of the pain, and then she was yelling at me that I had to open my eyes.
She kept coming over and be like
Can you open your eyes, please?
Can you open your eyes how I'm going to talk to you?
If you've got your eyes shut and I was like she's deaf like you need to like tap on her shoulder if you want her
And she's like, mm-hmm. I was like
And I was like, why don't they have your medical records here? That's just a bad thing with the NHS
I don't think they share records
or maybe they've improved now but
And then I was that time when we went and I was pretty sure you had kidney stones. Yeah
Because every time you went for pee you were like bleeding, and it was really painful
And then this other doctor was just like, I was like, I think she has kidney stones, and they were like, mm
I don't think so. I've seen grown men who play rugby screaming out in agony because they have kidney stones
She doesn't look like she's in that much pain. Probably just got sustitis-- well and then they literally just send you home again
They did. And then I passed a kidney stone. So.
whatever
Anyway, the point is I was like, right this is beeping ridiculous
You shouldn't be having to go to A&E like every month, your GP should have like more of an understanding of your problem
You're not being overseen by any specialist and yet you have a very specialist
Diagnosis that I've never even that most people have never even heard of I was like we need to find you like an overseeing consultant
So next time I go to A&E I can be like, she is being seen by professor blah blah blah or at the so-and-so
Hospital and then they can ring that doctor and say what should we do for this patient?
Yeah doctors don't tend to listen to young looking women. Yeah, weirdly I
basically googled
Google's--(we're not getting paid by Google for this video, by the way). I did my research. I found a British
doctor had written loads of papers and studies on--not loads, but more than anyone else--on HNPP and they were based at
Queens Square Hospital in London, which is a big like neurology specialist hospital
So I wrote an email one night and basically just said my girlfriend got diagnosed with HNPP when she was 17
Since then she's had no overseeing
Consultants. She has these ongoing symptoms
We would like some answers
Is there any way that she could be seen at your clinic blah blah and they write back like literally like the next day saying?
Oh, yes, we'd be more than happy to see your girlfriend
Let your GP know that you've that we've contacted you back and ask for a referral. So that's what we did
yeah GP was like oh okay
Huh GP is like your general practitioner
So it's like your family doctor that you go to is like your main point of call to them get referred to specialist doctors
So this is the thing I have memory problems. That's why you're here telling this story
so then we went to Queen Square and they basically did a whole day's worth of tests on you all the tests that
Prove that you have HNPP. Not that they were trying to prove that she had it, because it was written in her medical notes,
but just to get a baseline of her of how severe the condition was so the consultant said
You have a severe form of HNPP. Like, you're displaying a lot of the symptoms
Where some people only have like mild symptoms. You have a quite a lot of severe ones.
Obviously a history of multiple palsies not just one episode
But the good news was she then said to us thinking we already knew it like just as a side point
Oh, by the way, like she didn't even say by the way, she was like as it's an episodic
Disease and I was like Whaa? it's not progressive? and she was like no it tends to be just more episodic
So it goes up and down with your life
Obviously as you age things might get harder, but if you like after yourself, yeah look after yourself
Do these certain things like don't carry high heavy bags and don't lie in one position for a long time. Don't be an idiot
So that was great. So we've been you were like, yeah, that was quite a shock. Yeah. I think I probably cried. so from
Eight years. Yes. Obviously, they'd been
More research done and they've worked out it wasn't progressive
it was more episodic and there were more people diagnosed with it and they thought originally because I was like
This is why I needed to see a consultant in the field who like knew
what they're talking about. and then this--because the doctor was like, would you like to be in a longitudinal study where we basically collect lots of information
so I thought there was no research being done because I got told that no one wanted to fund research in it because there was
No cure and if you can't market a cure, why would you bother paying for the research?
so then she told me all about HNPP and you're like
But you do have these other symptoms that don't really fit at all that you clearly have some connective tissue disorder
and I said I do so she sent me off to Rheumatology where they checked all my
because you're all Double-jointed. You've always been double jointed and she thought that was obviously going to make your HNPP be worse
She needed to have that looked at because if you're gonna over stress your joints, yes, so she went to the rheumatologist
He was really nice. You're not faking. It was like I know
The rheumatologist is basically someone who deals with connective tissue and bones. He was great
so, yeah, he told me that I have connective tissue disorder and
He sent me to the migraine clinic
So basically now, you know you had you now had another diagnosis another diagnose of MC, mixed connective tissue disorder
MCTD, which is similar to like Ehlers-Danlos Syndrome. Yeah, he didn't he wasn't like we can't do much about it
Unfortunately, you just need to do Pilates and don't over stress yourself trying to strengthen your muscles
They're not over stretching your ligaments things on up. And then you were actually my main symptoms, I get migraines all the time
I'm like sick all the time. I'm like irritated to everything I eat. And he was like mmm okay
Well, your stomach is like and your guts all connective tissue. So we'll refer you to
gastroenterology, which is the stomach and guts you have to wait like months. one department to go to another department and the annoying thing is
Most of time the departments don't talk to each other
So you need to use your GP as your primary doctor as the source to kind of link it all together
So you have to have a good GP. We didn't really have a good GP
So we were basically doing this all by ourselves like linking
It was mainly Claudia
Claudia was my GP and so we went to gastroenterology. They put a camera down my throat. That wasn't very pleasant
And then they said oh that I should have fodmap. No just like a severe form of IBS. Yeah irritable bowel syndrome
Due to my connected tissue problem. Yeah and mainly due to like an overgrowth of type of bacteria
Oh, yeah, your gut flora had been disrupted because you've had so many
medications when you were like first diagnosed when they're trying to find out what was wrong with you and then also then you're being
Really weird diet so your gut flora had just been completely wiped and there was like an overgrowth of all the wrong stuff
And they were like follow the fodmap diet and that has made such a difference to my life
It really has you're hardly ever sick
now I would say you're any sick when you have a really bad migraine and also that's reduced as well because your migraines were coming from the fact
The fact that you weren't getting enough energy and you have been sick
So like one, of a variety of other things, but I got sent to the migraine clinic
But we only went once because then we got discharged because I had a migraine. Yeah, but before that
we went back to the GP and
I was like, okay, this is all great, but we're still getting a migraine
So can you refer to neurology and they were like okay, so you went to
Neurology which is like the head doctor-not on Queens Square. This is like just a more local doctor and to a nice guy there and
He did scans just to check that you didn't have
spinal
fluid leaking out still because you basically said like when I change
Positions when I stand up if I change temperature like getting out of the bath for instance
I feel really faint. You have low blood pressure. Anyway, he did all these other tests worked out
you didn't have like your spinal fluid leaking from your brain, which was great. You were like weirdly disappointed about that
because you were like I hope they find something so they can just fix it. Yeah, I got something you can fix
Yeah, so but then he did give you some more initials. More letters to your name
Yeah, I have and he said I had POTS, postural orthostatic tachycardia syndrome
Why can I remember like that whole thing but I can't remember my like yesterday
Yeah, that was another diagnosis that we'd gathered into our little basket. He was like
Diet cokes really great because it's got caffeine and that increases your blood pressure back to your head
Constrictor and then basically makes you feel better. That's why when you're feeling like woo woozy you crave a diet coke all that caffeine free diet coke
was a waste of time
Also the fodmap diet
Is a very complicated diet, but you can find it online
Google, it one of the like big no no is leeks. You get really stuck on the leeks. I'm sure I was eating more than leeks
No, you literally were eating like, you know, like those microwave boxes we have
You filled up with like two leeks. I know because used to get me to cut up the leeks so that you can eat them
so we stopped that and then I was like
Why don't we start introducing- like you don't have any energy and I thought what's your next thing?
You know chronic fatigue and I was like, okay
Like I'm not a nutritionist but people get energy from like slow release like carbs and you're not eating any carbs
You're just eating like
Vegetables and frozen berries and yogurt and you have no sugar in your diet so you can't even get a quick release energy
So I was like, why didn't you just try and eat some rice?
I've never heard of anyone who's allergic to rice
Not there aren't people who's allergic to rice. But it's kind of rare. Don't feel alone
I made you eat like a little bit of rice. I don't think you know did so well initially
No, I think I was sick. Then I made you eat a banana. At the end of the day you're sick like all the time
This isn't gonna make things worse
No, you held down banana once and actually then you felt bit better
And then we tried sweet potato
Ah, because we read that sweet potato is more easily digestible as a starch compared to normal potato
And then you were just hooked on sweet potatoes
Because like you ate it you immediately felt better
And you weren't sick. Shouldn't we mention that we started with like really small amount. Like really small amounts
Don't Jam a whole one in there. You got to like realign the gut with all this new stuff. What else? oh the migraines
Yeah, still get the migraines but less
Less than you used to currently being invested and that's the next thing we're now looking at
You've been to a specialist hospital and a different specialist hospital in london. I've been to all of the hospital
I'm gonna go for some more tests. So essentially she saved my life
Maybe you were expecting a shorter story when you clicked on this video
No, our story is inevitable
But no...are you fixing my make-up. Yeah. I cried
Anyway the moral of this story is yeah we did..everyone should have a Claudia
No there was a moral to this story. God your memory is bad
We got to find you a doctor for that
Advocate for yourself
Yeah not just accept your struggles and your conditions and
What your doctor has possibly told you and when a doctor says "No, that's like not what you have and you're making it up"
seek a second opinion
yeah get a second opinion or a third one. Try and go to the top and you know that it's difficult and you probably need someone to
Help you. Yeah, also not gonna lie
It does help to have someone who is a) able-bodied and b) has some kind of background in medicine
Yeah, but like I said most of this stuff is available on Google. I found that doctor that basically kick-started this whole thing
Yeah through contacting her receptionist
Free Google. You're so much better than when I first met you in terms of your health
But also like like you say your general happiness. You're far more
You're not like completely independent, you know and you still need help, but you are a lot more independent
Yes, you don't need to have a morning nap every day
You sleep like a good 10 hours every night
Now you still get chronic fatigue
but like a lot less than you did go out to restaurants and you can enjoy more food and be less worried about
Traces of things in it. Just enjoy life. Yeah, you're just like so much happier and healthier so you did save my life
Because now I have a fun life and it's full of love and happiness
Thanks, wife. Ahh thank you
I love you very much and I didn't want to spend another damn night in A&E
Do you want to show them the pretty ring I got you. She's gonna start wearing more rings. She decided cuz it looks cool
I did used to wear loads of bangles and rings
We'll stop waffling now. Bye bye