Do you want something?

There’s a pillar in the middle of our office so I can’t see the lady sitting diagonally opposite me unless I move my head to the left slightly. And this one time…

I couldn’t be sure until I experimented a little first. So, I sat with my head upright (couldn’t see her), then tilted it left (could see her), upright (couldn’t see her), tilted left (could see her), upright (couldn’t see her) – “Do you want something Hayley?” she asks – “No, just checking if my left leg is cold.”

Eh?!

Every time I tilted my head to the left my left leg got cold. It was very odd, and I looked very very odd trying to figure it out.

You can’t see this – but I can feel it.

* SLAP *

Well that was a rude awakening…

Happily lying in bed snoring away I was, when something slapped me on the belly. Awoke startled and confused I did. I looked under the downey at my belly where only my hand was resting peacefully.

The slap on my belly was my left hand hitting me all by itself. There were teeny tiny twitches in my face. My left foot then jerked. I could feel my arms trembling. Even my right calf moved.

I lay in bed trying desperately to fall asleep while my body rattled me awake. I was having involuntary contractions of muscles – spasms.

You can’t see this – but I can feel it!

…with cat food stuck to my backside.

You know that moment in a film when someone is knocked flat on their back and they look up? Then all the heads come down over them to see if they’re ok? That’s what I saw.

I knelt down to get something out of the bottom drawer of the filing cabinet. When standing up again I fell backwards – flat on my back. Everyone helped me up and suggested I go home. I agreed.

As the day went on I became weaker and weaker.

The next morning when I woke, I couldn’t move. Stuck on my back again. Thankfully Mum was there to pull me up, but when she let go I would just fall backwards again. My muscles were just too weak to hold me up. I needed assistance to walk, to stand and even to sit. This wasn’t isolated to my legs. I tried to pull a chair out from the dining table to sit on. Have you ever found something so heavy that you shake when trying to move it? This was me with the chair, just a regular dining chair that wouldn’t budge an inch.

As soon as I was able to shuffle around unaided again I went to feed Chloe, my cat. When I leaned forward to shake the munchies box at her bowl on the floor, my muscles lacked the ability to hold me up and gravity prevailed so I fell and ended up sitting in the cat’s food – one bum cheek in each bowl. I shouted “Mum!” The first thing she did was laugh and take a photo of me. Then she got the boy next door to come over and pick me up. Thanks Mum!

The boy next door, Mum, and me all shuffled into the kitchen…

…with cat food stuck to my backside.

You can see this.

You’re just imagining it.

This is one of the earliest responses to one of my first and now one of my most common symptoms; when I bend my neck to look down I get these strange tingles that shoot down my back into my feet.

The first time I felt the tingles I shrugged it off. The second was a few days later. I shrugged that off too. Eventually I began to realise that it was only happening when I flexed my neck to look down. At this stage MS still hadn’t been mentioned yet, thus I decided to do a little experiment on myself…

I sat down and looked left, then right, then up, then down – “ooh, it happened when I looked down.” So I stood up and looked left, then right, then up, then down – “ooh, it just happened again!” “There’s definitely a pattern forming here” I thought. Why it only happened when I looked down though, I had no idea?

It’s what I imagine an electric shock to feel like. Sometimes it’s a small, quick, rush of tingles throughout my body; sometimes a colossal bang! of pins and needles shooting out to my extremities.

I’m told it’s a form of neuropathic pain caused when my nervous system is inflamed and it is very common in MS and a few other conditions too.

You can’t see this – but I can feel it.

Right, who did it?

I look round the room suspiciously… Then I go wipe it off my face. But my face is dry – there’s nothing on it! I was sure someone just sparked water onto my face.

It’s so weird. Every now and then I would get the feeling of water being sparked at me. I’ve also had kinda the same wet feeling of running water on my legs; they were dry too. Another time I thought I was dribbling from the corner of my mouth. I have been known to drool in my sleep. I wasn’t dribbling on this occasion though.

I often get strange feelings but I wasn’t prepared for having water sparked in my face repeatedly.

You can’t see this – but I can feel it.

Tip of the tongue.

I think we’ve all had one of those moments. The one when you know what your trying to say, but you just can’t find the word you’re looking for – when it’s on the tip of your tongue.

Do you ever accidentally mash words together creating something new and wonderful? I do – such as ‘occupensions’. I was talking about occupational pensions at the time. My brain must’ve thought that I needed something quicker to say. I quite like it, maybe if we all use ‘occupensions’ it could be in the dictionary one day?

Sometimes, without trying, I manage to magically swap letters from different words around. Like totem pole became potem tole. And trailer tipped became tailor tripped – this one changed the gist of my story enormously.

I also muddle up whole words; ‘I can’t bear to see that face his many times of the day’, which was meant to be ‘I can’t bear to see his face that many times of the day’ (I can’t quite remember the context of that sentence now though).

These verbal blunders of mine are frequently exposed when answering questions, meeting new folk, talking on front of lots of people or when trying to tell funny or exciting stories. I get flustered. People have reassured me that the blunders I’m so, so embarrassed of are not that obvious to anyone but me. I think they’re just being nice. But exposed – that is exactly how I feel when I’m talking.

You can’t see this – but if you listen carefully you can hear it.

I’m scared of spiders…

…not heights.

Vertigo is commonly perceived as a fear of heights. It’s not.

Sometimes the world is spinning; sometimes objects on front of me are sinking – this is vertigo.

It can make me feel as though I’m squint, like I’m leaning over too far to one side. So, I lean the other way trying to straighten myself, but in fact I wasn’t actually leaning sideways to begin with… I was upright all along and in my attempt to wrongly try to fix what wasn’t squint originally I have really and truly made myself squint – you see?

Vertigo makes trying to simply step onto a step challenging. As the step appears to be moving, I tentatively put one foot out in front to tap my way to where the step is before stepping out, something I used to do with such ease. Every wall becomes a grab rail also. Well, that’s if I can catch it, they’re all moving too!

These little things – wobbling around trying to remain upright, caution when walking on a surface that isn’t completely flat, holding onto to walls for stability and attempting to catch a moving object that isn’t actually moving – it makes me look like I’ve consumed too much alcohol.

I find it embarrassing to be seen this way. I can feel what I can only described as eyes all around judging me, judging me for being drunk at 10am. If only they knew. If only they could see this oscillating world that encompasses me.

You can’t see this – but I can feel it.

Mum, is the road clear?

Just driving along, quite the thing, Mum in the passenger seat…

“MUM! Is the road clear?!”

All of a sudden there were bushes all across the road on front of me; double vision had pulled the bushes from each side of the road together, blocking my view. Mum appeared terrified.

Vision problems were some of my very first symptoms as with many other people who have MS: I had double vision where I saw multiples of everything, blurred vision where I struggled to focus on what was right there on front of me, floaters in my vision that blocked what I was trying to see and blind spots in my vision where I saw nothing at all. As these were my first symptoms and MS had not yet been mentioned, I just thought I was starting to need glasses or something.

These symptoms were not painful but did have an impact on everyday life. The thought of losing my eyesight was getting me down, ordinary tasks took much longer to do as I had to spend more time trying to focus my eyes on the task in hand, then strain on my eyes became exhausting physically and mentally and to top it off, I knew it wasn’t safe for me to drive. This loss of independence was incredibly frustrating.

You can’t see this – but I can.

I’m not being lazy – honest!

I must admit I have been very lazy in the past. Getting up for school was hard. Getting up for Uni was even harder. But this was different.

For four days I slept. When I woke from “a good night’s sleep” I needed to sleep again. I wasn’t up late the night before, I didn’t do hours of stressful thinking and nor did I spend the day running around like a wild banshee. It’s not painful and it doesn’t exhaust me physically but I was unable to function ordinarily in everyday life. This was an unexplainable, absolute and overwhelming fatigue that knocked me for six.

Other people with MS had described this to me before. I never really understood though until I felt it myself. One woman expressed her worries to me – that people would think that she is just being lazy – I now know exactly how she feels!

You can’t see this – but I can feel it.

Where’s my oxter gone?

Ox-ter [ok-ster] – the armpit

noun Scot. and  North England .

I’m in the shower. I keep touching my right armpit – it feels funny. More accurately, it doesn’t feel like it exists anymore?! My fingers can feel that I’m touching skin but my armpit can’t feel my fingers. Or the sponge, or the shower gel, or the razor…

I get these numb bits. They occur anywhere on my body and at any time. For months I couldn’t feel my left hand. It started as a nuisance but the longer that this was the case the more dangerous it became. I couldn’t feel boiling water! The first numb bit was a strip down the front of my left thigh. Then a small patch on the left side of my belly. Then a large area on my back.

The first time I met my neurologist – he had a needle. He went down my back from top to bottom pricking my skin with the needle. My Mum looked on with confusion as I didn’t react at all to the little stabs on my back. I however, didn’t realise that his needle was even touching me yet. Only when the pricking reached the bottom of my back did I feel it – and my goodness I felt it alright!

You can’t see this – but I can feel it.

Or with this symptom – I actually can’t feel it!