It’s been a funny week. It’s Christmas Eve. I’ve managed to survive the onslaught that is my twin’s birthday on the 22nd and am gearing up for not only The Big Day but my step-daughter’s 21st on the 27th and thankfully we’re not hosting New Year. It’s all been taking its toll a bit, but I’m hanging on with a sense of humour, grim determination and a very good notebook. I like lists. My ‘to do’ lists are way too long but I can pretend some semblance of control.

When you have Parkinson’s you have precious little control over the most basic thing. Something most people take for granted. Your body. It’s sometimes as if it’s not your own. You try very hard but it’s always an increasing battle. It’s hard enough to push yourself to do things, but pushing everyone else along too sometimes feels impossible.

This week I’ve had two people I thought would really know better say the most ridiculous, but unwittingly hurtful things to me. I’m going to change the name of one to protect the innocent, but they will know who they are. I know someone, let’s call them Fred. They have a close friend with a chronic condition that causes pain and inflammation of the muscles. It’s certainly a horrible, debilitating thing. I would not wish it on anyone. Yet in conversation this week, not for the first time, Fred remarked, “you don’t understand, you’ve no idea, it’s awful. If they have bad days it’s terrible for them. They need to take medication every day.”

Let’s just say Fred and I were once very close. He really should know better.

“Is that right?” I pause. I mean, it’s not a contest, and I sure as hell don’t want to win it, but.. still. “I understand it’s unpleasant but not degenerative. Hm. I wish I had it instead of Parkinson’s.”

I was accused of being mean. I have to probably agree. But then again, coming from Fred, whose only health issues are self induced due to laziness and bad habits, I feel it’s only fair to point out the difference.

I later had a conversation with my Dad. I’ve not changed his name. He’s still my Dad. I’ve mentioned him before. I love him deeply but he says the stupidest things sometimes. This weeks pearler was whilst talking about someone he knows with Parkinson’s at an old folk’s club.

“I was talking to John, you know, the fella with Parkinson’s. Well. You know, but he’s got proper Parkinson’s, you know, and he said he’s done well this year.”

I query, “Proper Parkinson’s?”

“Well, yes, he’s not like you, he’s got it properly.”

“What, as opposed to the imaginary pretend version I have?”

I cannot even begin to explain how this makes me feel.

When I get up on a morning, sometimes, more often than not these days, after dealing with a painful left leg through the night, the toes on my right foot curl up uncontrollably. It hurts. A lot. I take 1.25 milligrams of one tablet, a fast action tablet and another dopamine replacement. For good measure I knock back some magnesium too. I guess it can’t hurt. I slowly regain use of my hands and feet. Bending becomes easier. I exercise. Physio, stretches, riding my stationary bike whilst watching crap on Netflix. If I don’t and miss my morning window, the day takes over and I lose the chance. Exercise is the one thing I can do to try to slow my horrible disease down.

It would be oh so easy to give up. I see your sympathetic faces, I know you all mean well. I would react the same way. But I want to scream. It’s NOT FAIR. I DON’T WANT THIS – THIS WASN’T SUPPOSED TO HAPPEN TO ME!

But it did. And I have to cope the only way I know how, which is to fight back. I’m a normal, average girl from Leeds who dislikes all forms of exercise but it’s all I’ve got if I want to continue to walk, run, take an active place in life as we know it.

When people make these comments, they’re incredibly hurtful. How dare you, in one stroke, attempt to disregard, nullify and completely ignore the seriousness of my situation? It’s like finding out someone has a terminal illness and saying “well, you’re OK at the moment, but I’ve got a cold.” I’m not saying I expect people to fall over themselves in sympathy either, just, think a little. What you’re saying when you make these comments is that you have no idea of the gargantuan effort I undergo every day, and other like me, just to appear ‘normal’ to you. I remarked to my Dad that it’s OK, I’m sure if I make it to my late 70’s I’m sure I’ll look much worse. I’ve a long way to go. Hopefully.

My Dad has no health issues. He never has. He’s 81. I’m delighted he’s well. I just wish he thought a little before he opened his mouth sometimes.

That was depressing. It’s Christmas Eve. I’m going to go be happy.

Meri Kirimete from New Zealand. Until next time.