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Have you ever just been sore for no reason?

The 23-year-old MS patient describes some of the disease's invisible symptoms.

Last updated: 15 Dec 2013 10:29
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Hayley, 23, has MS and sometimes struggles to speak, leading some to assume she's drunk too much alcohol [Al Jazeera]

She asks: "How are you now then?"

"I'm not sure," I reply. "When I bend my neck to look down I get these strange tingles that shoot down my back into my feet. And my left arm just goes dead sometimes."

"You're just imagining it," she tells me.

Then the other one says: "Do you know what a hypochondriac is?"

From those first little feelings and responses until now, I've experienced a broad variety of symptoms, reactions, emotions and perceptions.

I really did believe I was a hypochondriac. When every sensation you feel is unexplainable and the doctors throw around explanations such as sick bug, meningitis, stroke, ear infection - and it turns out to be none of those things - well, I can see why those two individuals thought I was making things up.

Now, when people find out that I've been diagnosed with Multiple Sclerosis (MS), they say: "I'm sorry to hear that." Some people assume that a diagnosis of MS means that I'll soon be in a wheelchair or using a walking stick. For some, unfortunately, that is the case. But everybody's MS is different and the majority of symptoms can't be seen – they're invisible.

Have you ever just been sore? For no reason? We have.

What is sore anyway? Is it when your skin is sore to touch, when your right foot feels like it has been set on fire or when you have lingering pain in one arm, then the other, over and over again? Does the feeling of walking on needles count? One woman said she feels like she has a tin of baked beans tied to each wrist and ankle and this heaviness comes with absolute fatigue too.

For a while the right side of my face had a tightness in the muscles which made it look like it was drooping. Is this heaviness or tightness a pain that other people could possibly understand? In one relapse my legs felt wet. I kept touching them but, alas, they were dry. Sometimes I feel like I need to pee, but I'm not sure if I do. I have to go to the toilet though just in case. Most of these trips are just wasted journeys that use up valuable time in the day when I could be doing something worthwhile.

MS & Me - Extra

When I've spoken to other sufferers I've discovered that, like me, they have a horrendous memory. They also say that they mix up words, letters in words or forget the word completely. When I struggle to find the words I'm looking for I sound like I've consumed too much alcohol when, in fact, I've had none at all.

It's a Saturday evening. I shuffled onto the bus pulling on the grab rails. It took a little minute but I slowly got the words out: "Can you stop the bus outside my house when I press the bell please? I don't think I can walk down the bus while it's moving." I live on an island and there are no fixed bus stops here. But the driver didn't stop when I pressed the bell the first time. Or the second, third or fourth. Bit by bit I sluggishly made my way to the front of the bus. The driver stopped. I ended up walking half a mile back to my house. The day before I couldn't walk at all without help. The bus driver obviously thought I was drunk. Before having MS myself, I must confess, I probably would have thought the same if I saw a young female stumble towards me, on a Saturday night, slurring her words.

Dizzy, weak, tired, I had vertigo and a total lack of coordination. This made even the simplest things hard to do. If I was sitting or standing and started to lean over I couldn't stop myself. I would fall in that direction and then couldn't get up again - a bit like a beetle when it gets stuck on its back. On one occasion I tried to feed Chloe (my cat) but when I started to lean forward gravity prevailed. 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! I'm glad that she is this way. It would be so easy to cry if you couldn't see the hilarity of the situation.

Most of the symptoms that I've mentioned are invisible and there are so many more besides. You can't see them but we can feel them. What I would like to convey is that we could all try not to be so quick to judge someone on what we can or can't see.

Hayley will be trekking through Iceland to raise funds for the Multiple Sclerosis Trust, learn more here

 
Al Jazeera Correspondent can be seen each week at the following times GMT: Thursday: 2000; Friday: 1200; Saturday: 0100; Sunday: 0600; Monday: 2000; Tuesday: 1130; Wednesday: 0100; Thursday: 0600.

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