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 (!)

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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