Explaining what’s wrong with my hands [CC]

Explaining what’s wrong with my hands [CC]

Hello lovely people, I woke up with hands that weren’t working
too well so let’s talk about my supposedly ‘normal’ looking but really rather broken
hands. Poor little things. – fun fact I have more affection for my hands
than almost any other body part. They just try so hard. One of the more common comments on my videos
about plastic straws is ‘why does she need to use them anyway?’ And… fair, that’s
a fair question. Because whilst they look lovely from the outside,
they’re really not that useful from the inside. I’ll explain the history of my hands
and what’s exactly wrong with them in a minute but to give you a brief idea of the
things I struggle with: Opening jars
Using a knife and fork Doing up zips
Lifting glasses Picking up small things
Typing And… Signing I know, how useful for a deaf person (!) Remember to subscribe if you’re new here
and if you’re not then consider clicking the ‘join’ button and becoming a member
of the Kellgren-Fozard Club with access to bonus content! You might be surprised to know but using chopsticks
is actually far easier for me than a knife and fork. I’m able to make a pincer motion
quite well but my middle finger, ring finger and little finger are really letting the side
down. – They also have a habit of dislocating the
tips which is surprisingly painful for such a little joint. But why are they like this? How did they get
to this point? (I’d just like to point out that, as you will see in a minute, my hands
are actually doing way better than they used to!) Well… Even from childhood I was ‘clumsy’. I
couldn’t quite understand how other people’s hands were so useful. I was great at doing
intricate, detailed paintings or making origami or building miniature hotels for woodlice. – protect your wildlife at all costs! But I was really terrible at holding pens
the way I was meant to and I forever was dropping glasses and a tennis racket was far too heavy
for my limp wrists to pick up let alone swing at something. It wasn’t really that big
a deal though, I was just a clumsy child who also happened to be hypermobile. Meaning I
had very flexible joints and was just a bit floppy. But then I turned 17 and in my first AS Level
exam I leant on my elbow for about 20 minutes and once the exam was over my arm tingled
in a really weird way. It was just my thumb at first and running
up my arm, or down my arm actually… it tingled like it had been set on fire but without the
paining of burning. It was inside my arm as well as on my skin and it meant my thumb was
very difficult to lift. Later that day the numbness had spread and now my whole arm was
numb. The skin felt strange, as if it was coated in a thin film of PVA glue. Remember when we used to coat our palms in
that in school and then peel it off? Honestly nothing matches that level of satisfaction.
Except for proving everyone wrong when they say you can’t do something. It was very difficult to stretch my fingers
out and straighten them. I couldn’t raise my hand and the entire arm felt as if I had
been sleeping on it for hours and no one had informed my blood that now was the time to
rush back in. It didn’t cramp, if didn’t hurt it just… wasn’t. As if my arm was
slowly fading away and out of sight. Even in my brain it was becoming invisible.
If you’d taken my arm and moved it I would have only been able to give you my best guess
as to where it was. I had no idea what my arm was touching or where it was lying unless
it was directly upon me. As I lay in bed that night I felt that the limb resting upon my
side was only half mine: as if I was being spooned by another person who was half me…
it’s a chilling feeling to have a disembodied hand that may not be yours resting upon your
leg as you lie alone in a dark room. The next day my friend Kate came over to study
for our next exam and we found it quite hilarious how floppy my arm had become. I remember standing
in the kitchen with her, making her tea and attempting to lift the heavy glass jar with
the cork stopper that my mother kept raisins in. This arm that wasn’t mine could only
budge the jar half an inch before it flopped back down again. But I was right-handed so
what did it matter? I should have been revising but my floppy
arm played on my mind. I wasn’t panicked, I wasn’t even mildly scared… or at least
that’s what my brain told me. I was merely curious and intrigued as to what on earth
was going on. It was funny in the way that temporary medical emergencies can be. You
stubbed your toe and it hurts like hell but it’s funny because it’s just a toe and
give it a few hours you’ll have forgotten it even happened… But then I woke up the next morning and I
couldn’t even attempt to lift my arm. Suddenly, after 48 hours of mildly ignoring my complaints,
my parents realised that this might perhaps be one of those teenage problems they should
pay attention to rather than just nodding and humouring me- – believe me, there was a lot of nodding and
humouring me, I was a very dramatic child. And teenager. And adult. [beat] I make no
apologies. They took me to the GP, who looked more concerned
than I was expecting him to, who sent me to A&E, who looked more concerned than I was
expecting them to, who admitted me to the children’s ward, where they definitely looked
more concerned than I was expecting them to. For the next two weeks I lived in the children’s
ward having test after test after test… but going home at the weekends. My left arm
refused to move. I couldn’t feel my skin when they pricked it with a needle, I couldn’t
tell where it was when they moved it, I couldn’t lift it or bend my elbow or twitch my hand. And you should know that arms are really HEAVY.
If your shoulder isn’t actively keeping your arm moving and alive and telling your
muscles to hold that damn thing on then boy does it draaaag. It was like carrying a particularly
plump toddler strapped only to the socket of my shoulder joint. Strap some weights to
upper arm and then swing around a bit, see how your poor shoulder feels after that mess. Fortunately I still had my right arm to feed
myself with, write things down, type on the computer. Do whatever I wanted! But then, like I said, I went home for the
weekend and I reached up to take a glass from the welsh dresser and… it was as if the
air became treacle and my arm was suddenly weightless. The glass slipped through my fingers
to smash against the floor and my arm flopped back down. A feeling of dread rose within me for the
first time. I hadn’t cared when it was the arm I didn’t
use that much anyway. My left side has always been weak, I’ve always been very strongly
right handed… At least I told myself I didn’t care. My main concern up to this point had continued
to be how much the girl I really liked didn’t like me, rather than the potential brain tumour
all of the doctors were worrying about: – lesbianism: blasts away your other concerns! But here was the hand I relied upon, here
was my entire world, in hand form, letting me down. I stood on the kitchen flagstones, surrounded
by glass and cried those great, screaming sobbing wails of the girl who does not care
one fig who hears her because nothing mattered more than that feeling. It killed me. It absolutely
killed me. My parents took me back to hospital that evening
and by the next morning I had two floppy arms that swung around like lead weights, pulling
me ever deeper. Now someone had to feed me. And take me to
the toilet. And flip the pages of my magazine. Although I did become very skilled with using
my toes to turn pages. The doctors ran more tests and repeated over
and over how this was ‘most unusual’ and in the most pacifist way possible I wanted
to throttle them with my floppy arms because it may be ‘unusual’ in the lives but clearly
it was pretty standard in mine so they’d better get their acts together and give me
an answer. I had an MRI, a CT scan, X-rays, ultrasounds,
electrocutions, bloods, bloods and more bloods and then, finally, a lumbar puncture that
went horribly wrong but at least proved that I didn’t have meningitis or measles or whatever
the hell they were looking for. Honestly, I have no clue. I just know that it went wrong
and made me desperately ill where before, granted I had two paralysed arms, but, I was
generally okay. And this isn’t even to mention the number
of times someone subtly suggested that if I was doing this to myself or pretending in
some way I could just stop the whole thing and still save face. – this despite the fact they ran an electric
current through my body and noted that the nerves in my arms weren’t conducting anything. Yes. They essentially electrocuted me to prove
I wasn’t lying. Hospital is fun(!) Six weeks after I was first admitted to hospital
the results of the genetic screening tests that they had done on my very first day came
back to say that I had an inherited neurological condition that meant I have holes in the myelin
sheath (protective coating) around my nerves and that in all likelihood my leaning on my
arm during the exam had caused my nerve to bubble through the hole and get trapped. Or not. The nerve could also have been severed through
the hole. So either my arms were gone for good or it
would be a waiting game to see when they would come back and to what degree of usage they
would return. They strapped NHS issued beige neoprene all
over my upper body to hold it together and discharged me to go home and wait… possibly
forever. Everything in my life was suddenly beige as
my home began to fill with ‘accessible equipment’- which really is hideous. Every door handle
in the house was replaced from the round ones you actually need your hand to be functioning
to turn to long handles that I could just throw my useless but very heavy upper limbs
upon. I lay in bed every night unable to toss and
turn because I was strapped to heavy weights that sometimes landed on my chest and startled
the life out of me. Whose dead arm had flopped down upon me and how close at hand was my
potential horror-movie-like wreckoning??? But, slowly… I think in the first month…
my shoulders came back to life. I could lift my arms, just about, even if I couldn’t
do anything with them. They were heavy and useless but at least now I could allow my
armpits some air. – You don’t realise how necessary that is
until you really, really don’t want to realise how necessary that is. My mother strung ribbon between the handles
of my dresser so I could pull the draws open by myself…. Which was premature, looking
back, because I couldn’t dress myself. Finally I could trap objects between my arms
and rather sloppily move them from one place to another. I also had a better ability to
lean forwards and didn’t have the constant Atlas-like worldly weight on my shoulders. It felt freeing- as anything does after nothing. But my arms, continued to deteriorate from
lack of use. My arm muscles wasted away, becoming scrawny and knobbly. Around six months after they had left me my
elbows started to come back and we realised that when my hands were held in wrist splints
there was some movement in my fingers. Out of a splint they hung rather alarmingly- at
an angle even more acute than this- but once held properly they could just about function.
My pointer finger was the strongest and in time my thumb became more useful but my other
fingers were tight or stiff or difficult to control. It’s kinda hard to explain. I’m trying my hardest to straighten all
of my fingers right now and they won’t do it. They might do it when I’m not looking
or in order to complete an action but they don’t take direct orders from me. For around another year and a half I lived
with my arms in this way. I still couldn’t feel them but they did their own thing thing
really. I had a range of different wrist splints and
I remember people saying at the time how brave I was for not covering up my wrist splints
or hiding my hands in gloves. I constantly pushed by sleeves up to my elbows and it’s
a habit I still have. It baffled me when people said that. It was difficult enough to use
my hands, why would I have made that harder for myself but wrapping them in fabric for
the benefit of other people? Why on earth would I inconvenience myself
just to make others feel less awkward? They say it takes six months to build muscle
and six weeks to loose it. By the time my wrists could function on their
own my hands had been through two years of very little usage. The muscles in palms had
wasted away. It was possible to feel the bones of my hand through my palm and even see them
if I held it the right way. My hands curled in on themselves whenever I wasn’t actively
trying to straighten them. They were weak generally but the tendons pulling
them into cramps were surprisingly strong. They hurt so much I’d cry messily whenever
they cramped. Whilst they can easily flop down, bringing
them up again was a challenge so I adapted to rolling my hand around to the side and
using its own weight to pull it up. 10 years later and they still aren’t back
to what they were and probably never will be but considering they were paralysed for
two years we’re doing a rather good job! [bell sfx] While I can’t feel the surface perfectly
it now is just the top layer of skin so feels rather like wearing gloves rather than my
entire arm not existing. They do still look a little like Mr Burns arms but I guess there
can be glamour in being a T-Rex. Some days they’re much worse than others and are very
painful. I can’t type for too long or else I’ll have a few days of pain. They essentially
feel like they’re made of rubber and whilst there are little robot segments that go into
my index finger and thumb the rest of my fingers are just hit and miss. – By which I mean they hit into everything
I don’t want them to and miss everything I want them to catch. I know that some of my signs aren’t precise
or in the correct handshape sometimes and that’s… because they just don’t listen
to me. I have special, large foam-handled cutlery
at home that means I can eat by myself- although I generally prefer chopsticks because they’re
easier to use- – sidenote, this fork cost me £14. £14.
For one fork. With VAT relief because it’s a medical aid. Tell me again that there isn’t
a tax on the disabled(!) I constantly forget to take my cutlery out
with me because it’s a hassle and the easiest way to loose a £14 form you’ve ever seen.
We tend to eat in restaurants that have chopsticks or allow me to eat with my hands. I know, I’m incredibly ladylike. Much love
to those of you who also eat with your hands. The worst thing is weddings because there
aren’t any other options for cutlery available and often they’re very heavy knives and
forks. My lovely wife Claudia very gallantly cuts up my food for me and then I try to wrap
napkins around the handles but it’s a bit like wearing mittens and trying to knit. I’m pretty okay with it emotionally though. Having said that: the one thing I hate the
most about my hands is that because I can’t feel my skin, I can never tell when there
is something on my fingers and thus smudge dirt and the like around everything I own.
It really upsets me and I hate when people mention it. I know there are fingerprints
on everything. But when I try to make the mess better I inevitably make it worse. That’s
my special talent. [Bell sfx] I also, obviously, get pretty miffed when
people ask why I even need to use straws, I look like I can lift a glass just fine. [drops bottle] – Yes I just acted that out with a plastic
bottle, because I’m not an idiot who is going to break a glass just for fun. Half the time my wife needs to help me with
buttons and catches. Are you really shocked that these floppy things need a little extra
help? ACTually, scrap that: Muscular atrophy: we’re the cool kids really. I hope that’s answered some of your questions
and I’ll see you in my next video. [kiss]


  • Jessica Kellgren-Fozard says:

    Thank you for watching and always being so lovely <3

  • MerryRose Howley says:

    This is incredibly unrelated, but your voice seems to soothe my companion animal SO MUCH

  • Skarlette Arvolkskaya says:

    I haven’t watched the entire video yet so I apologize in advance if you address this in the vid – I just have a bad memory and will forget to ask if I wait til the end lol – do you have like.. sensory issues with your hands sometimes? Or if anyone else in the comments does? My fingertips constantly feel like nails on chalkboard even with softer textures. I literally will put on the disposable doctor-ish rubber gloves before I shower, because towels are a BIG no lol

  • thunder says:

    Great video! 😀 You should try these things called finger splints, they're great for dislocating fingers and other problems like that 🙂
    Plus, they just look like jewlery- I use them and nobody really notices it's for finger pain

  • ThirrinDiamond says:

    I can taste the sass and i love it

  • D Heuzen says:

    My toes dislocate all the time and it hurts like hell, i understand the weirdness of it

  • Gabrielle Messier says:

    “Muscular atrophy
    We’re the cool kids really” needs to be a merch shirt please @jessicaootc

  • Courtney Johnston says:

    See i had a car wreck two years ago and got a really bad tbi on one side of my brain ,however the doctors couldn't find it for over 8 months finally take a specialist and 3 eegs 2 comfirming the frist results . I can't remember much on day to day even when its been repeated to be alot and my hands swell and hurt sooo bad somedays i can use them well and other days not so much.
    I completely understand the glove feeling however mine is only covering 3 fingers on my left and 4 on my right.
    Your the frist person Ive found like me.

  • astrangeone says:

    You need a pair of reusable chopsticks to bring with you!

    There are cute ones in Japanese stores plus they come with a case to cover them!

  • Ctreefort says:

    Why did the docs not give you exercises, there are tiny ones that we use on paralyzed people sho it's not really an exercise more repetitive movement to keep muscle, to keep your muscles? Especially when they knew movement was coming back! Your docs piss me off! Even my in home client who has been paralyzed his whole life has someone there to do the repetitive motions for him so he doesn't lose muscle and have cramps. Ugh. Do docs over there even think long term?!

  • Cariad Griffin says:

    Omg I’m so concerned about my self by it’s over now by as I watched this video I got pins and needles and then my hand when thumb and couldn’t move my finger sand panicked by then it when

  • Simply Vince says:

    "Lesbianism blasts away all your other concerns"
    So true. Currently I'm more concerned that yesterday my girlfriend asked for her jacket back that she lent me a year ago and is still hanging in my closet, than I was two weeks ago when the false ribs on my right side decided they wanted to explore new places other than the spot they're supposed to sit at (I got them to pop back in place, I'm sure it's fine).

    (I'm ftm, but the theory still applies)

  • Margabo says:

    Jessica, you're such an inspiration, and so much positivity. Personally, I have MS, and heavy deppresion, but my wife and this kind of contet helps me get through rough times. Thanks. <3

  • Alex says:

    I actually kinda relate a little to what u went through ofc nearly not as bad but, for a solid month i kept waking up to my entire right arm being numb and not like tingly foot u sat on numb i mean like, i woke up, grabbed what i thought was my hand (but i couldnt feel it so it felt like someone ELSES hand) and screamed. I then proceeded to try and move this hand and couldnt like…at all…there was like subtle movements but that was it n then slowly over the coarse of maybe ten minutes the feeling and movement came back

  • Watermelon Wishes says:

    I never noticed til I saw the title of this video.
    I did something to my right hand (I'm a lefty) from carrying (and gripping?) items too heavy for one hand, such as 2 1-gallon bottles of water or detergent. Since then I get random small-ish spasms or single twitches(?)…the first time it happened, I got on a bus and started to put my change in the thingy and my hand spasmed and my coins went flying. I was absolutely horrified. I think the poor bus driver thought I did it intentionally since she said, through gritted teeth "Sit. Down." I felt so bad but was in too much shock to even try to explain. Even now, like 20 years later, I wish I would run into her so I could apologize and explain. lol

  • Liya says:

    You are so amazingly unique, you lesbian, deaf, vintage, hand-struggling beautiful woman. Love you!!

  • Windy Lowery says:

    You say floppy but what I see is beautiful graceful looking hands and I think they should be drawn or painted. Many of your adapted hand positions look like ones in beautiful works of art.
    Side note: as a person with EDS, I find it much easier to use chop sticks too. I keep some in my purse.

  • CHSwildcats19 says:

    Do you have trouble getting touch screens to recognize your fingertips? I have nerve damage in my hands & fingers and it is a near Herculean task to get my phone to recognize my touch. Since the screen responds to electricity, it doesn't even help to use the pen because the pen only conducts the electricity from your fingers, which I'm lacking. Are there specific aids you've found that help???

  • Cheyenne B says:

    Jessica! I’m an occupational therapist. You should consider getting plastazote tubing and carry around two lengths of it in your bag! That way someone can put it on any cutlery you encounter. You can also put it on anything…pens, toothbrush, anything you encounter.

  • JanineBean says:

    My doctor and I think I might have EDS and POTS (currently only officially diagnosed with fibromyalgia and inappropriate sinus tachycardia disorder, and I’ve developed cubital tunnel syndrome and I hate it. I literally got into a bath that was too hot (and I can’t deal with heat) because I checked it with my hands and it was fine 😑

  • amsaric says:

    Wow. This is insane. But you made it so entertaining! Did you ever go to physical therapy?

  • Willem van Aken says:

    Jessica you told this difficult story so beautifully. It makes me think how we are all always strangers to ourselves. We don't know our hands the way we know our thoughts and feelings. We might not even know our thoughts and feelings truly. The best we can do is pay attention and act with care. To our hands, to ourselves, to others, and to the things around us.
    Hearing you talk about working through these deeply unsettling experiences and adapting to highly challenging circumstances makes me feel a renewed gratitude for the abilities I take for granted. Then scrolling down and reading the comments of others dealing ingeniously with adversities of their own and the unexpected workarounds they find makes me feel hopeful in the face of (presumed to be) intrinsic abilities that I struggle with myself.
    Thanks for speaking out 💖

  • tom4ivo says:

    Has Jessica gotten funnier since moving into the new place? Her humor has been really cracking me up lately.


    That dress looks amazing in you!💗 Where did you get it from?

  • Gilles says:

    You are an amazing storyteller, I’ve been captivated this entire video! Keep up the good work 🙂

  • Nicola Foxfield says:

    "I guess there is some glamour in being a T Rex" Jessica, You are a genius

  • thebirdisblue says:

    I could listen to you all day

  • Siani Tripp says:

    I noticed some of these things, like rolling her wrists to lift her hands, but I thought those quirks were classy vintage quirks. I think it just proves how Jessica’s beauty shine from all the way inside

  • Haley Gruensfelder says:

    The whole time I was watching this I was like…. how do you do your brows so well with hand/finger issues??

  • Cailene Triangle says:

    Hello Jessica! Do you use speech to text a lot since typing can cause difficulties? In high school I brought a lot of my own cutlery to school and I had a set of chopsticks, a fork and a spoon (with thicc handles) that came in a very cute little case, it was either hello kitty or rilakkuma. It was hard for me to leave behind because they were bright yellow and maybe around $10usd for the set. Maybe hello kitty is too juvenile for a glamourous lady such as yourself but I thought I'd share just in case you or anyone in the comments found it helpful :). I believe you can also get utensils with the thick handles in cute sets in camping supply places!

  • Lolita Dolorosa says:

    Where chopsticks in your hair, boom hair accessory and means of feeding yourself.

  • Jacob Heckert says:

    A lesbian with broken hands?

  • BringOnTheRainxx3 says:

    So i have shitty joints. Theyre like.. fine, just sometimes hate me. Particularly my right shoulder. But after i stopped playing tennis, it was okay. Mostly. Anyway, a couple of months ago, i was folding laundry and felt myself tipping over to the right. realized after a while of being like wtfff, it was near impossible to keep my arm up and the tipping was my brain trying SO HARD to keep it elevated. Slowly, over the course of a werk or so, i was getting pretty scared to drive because my shoulder had just….stopped. only pain i was having was from the surrounding muscles getting pretty fucking sick of me flopping my arm around everywhere to do literally anything. Anyway, turns out it was just swelling from my shitty joints causing bursitis in my shoulder. Some steroids and anti inflammatories later and i was good as new. Which isnt very good, but good for me! Anyway, love being part of the floppy joint gang! (Sometimes)

  • Jene Clyde says:

    I understand the struggle, though I have Autism and fine motor skill issues. Sometimes my hands decide to simply stop working, I lose grip easily and objects just drop out of my hands. I threw money, yes threw money at an Uber driver because my hands went dumb and I couldn't control their movements any more. And other fun fine motor skill issues. I cannot type properly either. "Properly" But to most people I probably look like I am making stuff up because my hands don't act out all the time.

  • JCanaan Draws! says:

    This is such a mood. I have a fun little combo of arthritis in my hands/wrists and hypermobility! My hands will randomly let things drop or spasm and knock things over…and sometimes, I won't be able to get my hand to let things go. It's so incredibly frustrating and often embarrassing to be trying to drink and then suddenly throw the glass or drop it because the muscles in my hand decided to stop functioning.

  • Alex Christison says:

    Amazing as always! You go gurl!

  • WeirdCactus:1 says:

    Wow you are a very pretty woman 🙂

  • RedVexeD says:

    Subbed so fast my computer confused itself and restarted the video… 😀

  • Zura says:

    "Lesbianism: blasts away your other concerns!" Ain't that the truth

  • Lizzie P says:

    I lost feeling from my elbow to my finger tips, with tingling etc, turns out I have an issue with a nerve in the top of my kneck, luckily it isnt a permanent issue and only affects my right arm, often after ive done strenuos activity, or moved my arm/shoulder at a weird angle, it will last a couple of weeks and then eaze off

  • OMNIVISION says:

    You are amazing and such a strong person for not hiding your differences. Thank you.

  • Hanna Kamm says:

    "lesbianism" now you can't think about anything else! haha I'm crying your funny as hell

  • PeppermintToasties says:

    Oh man (or woman) =P But hey your video actually scared me. I am supposed to get an ultrasound done on my own left elbow, (been putting it off) because when ever I lean on that arm I also lose feeling in the side and get pins and needs and shooting pains… Can wake up with it. can last several days just goes away on its own…
    I also have Syringnomyelia and that might be the cause but geeze That is scary… While I am right handed, as an artist, I dont use my left hand, I have found it so painful that I havent been able to draw while the left arm is doing these strange nerve things.
    Perhaps I shouldnt be putting that ultrasound off!!

  • Kitti Plajner says:

    I love your voice your looks and your videos everything just says about you that you're a lovely person ❤️

  • Kathi says:

    You just don't seem disabled at all!

  • Seta W says:

    I feel like you would be such a good actress

  • Jaden Neko says:

    OMG you're so pretty! Wait, what? You're deaf and you deal with floppy extremities? Marry me! !ait, what? You're married to a gorgeous woman already? Aweriiiight. But on a serious note, I had to laugh very hard on such a serious topic. Thank you for the laugh and educational vid as this made my day and educated me along the way! Lots of Love from Scotland!

  • Dad says:

    Here because YouTube recommended your video. I'm what you might call a medical hobbyist. Did you ever get a name for your diagnosis? B12 deficiency perhaps? Did you ever abuse nitrous oxide? I can actually relate to some extent. I woke up with radial nerve palsy because I passed out drunk in my office chair. The pressure on my arm, from the arm of the chair, damaged the radial nerve. It made everything a pain in the ass for months. Fortunately, I recovered. A bit of a side note: If you ever come down with a mysterious case of heterosexuality, call me. Just kidding, of course; I'm happily married. You really are quite striking, though.

  • Fire Birb says:

    You're so amusing

  • Erin Malcolm says:

    You've really been dealt some tricky hands

  • Onyx Houseki says:

    Watching this video makes me absolutely terrified for my arms, like they're just going to fall off or something.

  • eutuxia m says:

    Wow first time viewer! She's so prettyyyy!!!!!

  • Renn Darcy says:

    oh my god this is what happens with my hands too, i also have hnpp, but i had t-rex hands for well over a year and couldn't move my fingers from my middle to my pinky right down to my elbow. if i set it off it happens again, and so far the best thing i've found was compression gloves (a lifesaver honestly)

  • Natthida Taengkwarum says:

    I love your hands btw. It's beautiful and lovely for me❤❤

  • Yashi * says:

    Thank you for that. I feel that you just described my “whole” life.

  • cynthia clark says:

    Lesbianism! Blast away your other concerns!

  • Lee Anne says:

    Well I have Rheumatoid arthritis and osteoarthritis in my hands so I have an idea. My arms get weak and my hands get numbness too. So using a manual wheelchair also gets hard so I know what you may mean.

  • n cnsnnts says:

    Huh. I thought you just liked your hands to look dainty, I didn't even question it x)

  • Happy Beebo says:

    You have the best personality omg I've never subscribed to anyone instantly before

  • lxndrboyd says:

    People really don't seem to believe you can get perminent damage in your hands that arnt the bones being broken. I got nerve damage in one of my hands while compensating for an undiagnosed joint issue in the other. I lost all use of my hands and the only thing the gp could think of to help them heal was to not use them for 9 months! Absolutely no one believed me, even other professionals thought I was lying… And I was 24 years old, not a child.

  • Sirijan Wittmer says:

    Did you do reeducation? Just curious about it. I don't have the same condition as you but I don't use all the part of my body because it's very painfull. I'm not diagnosticed yet but my doctor send me to the physiotherapist to help me and make me do exercise, he is also the physiotherapist of my Grandmother who is paralyzed and he made her walk with assistance. So I was just wondering if you went through that.

  • Aungie Jay says:

    This happened to me. I was 9 months pregnant at the time. Luckily I requested splints for both hand. They hurt so much when i tried to use them without. They barely moved at the thumbs. It took about 4 months for me to get my hands back. My wrist went out at the same time and Doctors were unable to do anything. I had to learn to reuse my hands. I had chills listening to your story. I am currently having problems with my legs and sometimes my head. I have spent so much money at the doctors and they didn't fix a thing. Horrible. Its been 2.5 years

  • Emy Anderson says:

    The fingertip dislocations are the woooooorst. I can pop a hip and shove that effer back in and I’m hurting but good, a fingertip goes and I’ve gotta medicate. They’re just the worst 😭

  • Renee Arias says:

    Oof. My joints like to dislocate themselves too. Worst feeling ever. Also, as an environmentalist and someone active in the zero waste community it annoys me how darn obsessed people are with straws…

  • AllieUncharted says:

    Sounds like it was ms or CIDP

  • Carole Hirsch says:

    Thanks for the explanation. I went on an anti-straw rant on FB, but made sure to include a caveat that it was directed at those who were capable of drinking without them. A disabled friend immediately piped up and said she needed to use straws. I read her comment and thought "you're who I was thinking about when I made the caveat!" She is a lovely, inspirational and highly stubborn young woman paralyzed days after high school graduation. The injury is high level paraplegic/almost quadriplegic and I've seen her sign almost the same as you, with the hands that don't quite listen to her. Thanks for explaining.

  • kills nipple says:

    I had this happen to me but to a lesser extreme. I had a limp foot for about 6-7 months, and was diagnosed with 'hereditary neuropathy with liability to pressure palsies'. This condition apparently happens when your DNA deletes a copy of a certain gene, so you produce less protein that helps your myelin sheaths be healthy and transmit nerve impulses (that's just my understanding, I am no doctor nor scientist). I have not had such a bad incident since, but my nerves are very sensitive to pressure. So, if I carry something heavy, lean on a table, cross my legs, write for too long, or hold a tight grip on a bus or something, I will go numb and lose control of that body part for anywhere between a few minutes to a few days. I also get nerve/muscle spasms and occasional cramps. All this can be really annoying, and even painful, and I'm really glad I found someone with similar symptoms speaking out about it. Thank you~

  • Jenni McKay says:

    “Why on earth would I inconvenience myself just to make others feel less awkward?” And going to live by this now. Thank you:) Love your videos!

  • Mariana Carvalho says:

    when she talks about her childhood I imagine it being in the 50's cause she's SO VINTAGE, and so I have to remind myself that it was probably in the 90's

  • Madelyn Martin says:

    I’ve had similar experiences with my arms

  • Mandy Hernandez says:

    I have peripheral neuropathy and have some of the same symptoms. The part that hurts me the most if feeling an electric current running through parts of my body.

  • sebeckley says:

    That generally curious attitude about a critical medical issue is exactly what happens when you have a stroke.

  • Linda Tannock says:

    Isn't it just charming that on a YT channel about disability (and invisible illnesses) that people have the nerve to ask why you can't use reusable straws, as you "look fine" ?? 🙄 *heavy sigh, and eye roll*

  • Breakfast0Waifu says:

    God I love your voice and how you talk

  • Amber Goode says:

    You mean so much to me, being able to watch your videos is such a joy and I’m am so grateful that you are here telling us al these things about you because it makes me feel a sense of happiness, I adore you A LOT 😁

  • Emily Kirry says:

    this is my first video ive seen of you (thank recommended) and im in love! your personality is lovely!!!

  • Emma Fraser says:

    In a book called "a man who mistook his wife for a hat" by oliver sacks there is a chapter about a women who lost feeling in her whole body and had to learn to walk and stuff again without being able to feel.

  • Angel Honey says:

    Your necklace 😍😍😍😍😍

  • olivier the spacegoat says:

    sobbing like crazy here and I want to say thank you.
    for years hospitals and doctors (and my familie and teatchers) are trying to figure out what is wrong with my hands and why my pinky is in a weird claw shape on both my hands.

    and I have the most trouble with explaining exactly what it feels like to people who ask what is wrong and why I wear splints, or trying to find ways to deal with not being able to hold stuff, and having my studie based around designing stages and costumes for theater and also making them…
    that can be a problem when you need to get a bucket of paint from the basement or deal with heavy fabrics…

    your story just gave me such and amazing handle with words and explanations on the weird feelings and problems that come with "losing" your hands and I just wanted to thank you for this video.
    new to your channel but i am defenetly going to check it out ^^

  • Amie Whitlock says:

    You are my favorite human 🥰

  • Krystle Starbrooks says:

    Love you and your beautiful hands and hair. I'm sorry you went through so much at the hospital. But I'm glad you're getting better 🤗

  • Megan Perry says:

    Your channel is a massive winge about things wrong with you

  • Afontanez7 says:

    I happened to stumble upon this video – I have never seen you before. May I say, you are absolutely stunning, and a pleasure to watch. A lovely sense of humor! I think your hands are also lovely – dainty, even! They remind me of a Dresden porcelain figurine. I'm so sorry you've suffered over the years; I'm happy you have a wife who loves you to bits! I'm off to watch more of your vids! Cheers!!

  • Hi my name's davy says:

    I have RA sometimes my hands say no and I’m like no!

  • Mel Pascal says:

    What I love the most about your videos (Appart from your amazing personality and sense of humour) is that it really shows how much discrimination there is on disabled or even just sick younger people (and women). If I had a dollar every time a medical professional told me I had nothing wrong and just had a soar muscle or a « girl cramp » when I actually had something urgent… I’d be rich! Last time a doctor told me I was constipated and gave me laxatives… I had appendicitis and it was about to burst. 🤦‍♀️
    The time before that was « probably just my period »… I was miscarring…

    So it really helps me to know that at least it’s a real problem in the medical field and now I don’t feel so bad telling the doctor to listen to me more!

  • Michelle DeSelms says:

    Thank you for this. I have a medically challenged child who also needs straws, specifically bendy ones. Hard straws are of no help, nor paper ones, because clenching of the jaw is also an issue. There are many valid rrasons for straws… banning them annoys me to no end

  • Mae McCaffrey says:

    you are hilarious and wonderful and i love you

  • Ash H says:

    OMG!!! I have the same issues in my legs and was also given similar tests but to no avail in my case. What’s the name of this condition? I honestly think I might have solved my own health dilemma. Neurological issues that numerous doctors at a research/ university hospital could not figure out. I have to get the name of this condition!!!

  • Jacqueline Therese Plunkett says:

    Wow. Thank you. I had no idea chopsticks would be easier. Also tax on disabled! Australia is trialling a national disability insurance scheme… I.e. a tax for everyone to help. It's getting a lot of crap because the launch was rocky and first tranches of payments arent going perfectly.

  • Mel Mez says:

    Lesbian hugs 😔

  • Cool says:

    You don't have to explain anything to anyone.

  • Foxi says:

    Just a thought, they may have been doing the lumbar puncture to rule out MS. What happened to your arms sounds like it could indicate MS, which would make sense for them to do MRIs and a lumbar puncture as those are 2 of the ways doctors diagnose it. As an MSer, I'm glad that wasn't your diagnosis, and I'm sorry you even had to go through that procedure. I can identify with the sheer frustration at people daring to suggest you are crazy/deluded/making it up etc!

  • Bitch Aholic says:

    I've had points in which my hand will jolt and I will drop anything I'm holding. And now im that my arms/hands have been going numb/ having horrible circulation. I've had the same instances in the past and am kinda worried.

  • ladybassguitarplayer says:

    I LOVE how you tell your story.

  • Madison Morgan says:

    I feel so sorry about what your going through.

  • La Ans says:

    As soon as you described feeling like the arm wasn't yours and not knowing where it was, I knew it was def nerve based / neurological; my gran had a stroke some years ago which didn't cause any further trouble at the time, but 2 years ago or so she had some related seizures which have caused her to lose most of her awareness of her left side (further worsened by the fact she already has a glass eye on that side) particularly her arm which she refers to as "Mabel" and can really only use absent-mindedly, rather than on purpose.

  • Moonette Wolfsong says:

    Thank you for the backstory! <3

  • shana c says:

    I appreciate you and your sassiness

  • Ipsita Roy says:

    You make up is so on point beautiful lady

  • venusstardustkyojin says:

    i still use pva glue. i still peel it off. absolutely the best thing in the world (i forget how much i love you until i watch another video of you. Also… would it be possible to make a wrapping type thing to go around a fork!? neoprene and velcro?! asking as a chronic illness sufferer and also a crafty maker)

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