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"The thing that is hardest is that sometimes even usually, there isn't an issue. Or maybe something's not quite right, or it's just being tired, or a strain, or a cold, or maybe age? When it hits though, after the body audit and the checking, then you know he's back. There are names, episode, incident, attack, I think of the name Marcel. When Marcel calls it's both annoying and frightening, is the visit in progress, or over? How long will this one take to leave? What will I do? What work-arounds, excuses, changes will be needed? Dr Deb, the neurological specialist, one of New Zealand's experts told me there may be no reason for Marcel to make a serious visit ever again. Well she didn't exactly say that, what she said was eat well, sleep well, get some exercise, don't get stressed and there may never be another attack ever. Others have lived their lives with only minor episodes.
But Marcel is still here, he has talked to the insurance companies and told them he will get me, so they don't like me and don't want my money. Occasionally I get a pins and needles feeling on my head, or in my arm, always on the right, and I feel a little numb for a few days, or weak on the right, or I drop things or I limp.
Oftentimes I need to sleep more. But that and eating well and walking a bit is all right. It hasn't affected my work since the first visit. I do get tired, but that may not be his fault.
Most people never see Marcel, I've always been clumsy and I've only known him for 5 years. And really I'm very lucky, I'm not progressing with Marcel, I'm relapsing remitting. Marcel, when he comes, visits and leaves. Many people think he's not real as they've never met him and never seen him with anyone. The first time I was paralysed all down my right side. I couldn't walk properly or stand, or shower, or write. Marcel or MarSel (closer to his real name) hit me for three weeks very hard. Then I met Dr Deb, and we took blood from my spine and I had an MRI and she said, "There's no doubt in my mind, this is MS". Maybe he came because of the stress of the quakes, as no one in my family has met him, so physical and emotional stress may have been his first beacon. That's how I met Marcel, but I think sometimes he's there somewhere in the background, wanting to hit me, but has kept his distance for 4 plus years. I am lucky, he's like an earthquake or a robber, or a plague who comes like a curse in the night. And he's not a tumour or cancer so I've always felt blessed that it wasn't worse.
He mainly visits women, well 75% of his friends are female. He loves people from the south, so if you live in Kerikeri you're very unlikely to meet him, but Invercargill or Dunedin you will know one of the people he stalks.
I wish insurance people would understand Marcel isn't a death nell, for me, nor am I aware of him. The same is true for many others he knows, but like a sometimes reoccurring cold. And although I know him, my mind is quick, and according to Dr Deb I am unlikely to be affected again. Well maybe minor things. Truth is with so little research funded and that older woman and people in the south are usually the victims, it seems to have been ignored. It's not a glamour disease, we really don't know much about the cause. Some people are progressing and they need our love, our understanding and donations to the neurological researchers (who really are world leading in NZ).
The Chinese say (Tao Te Ching)that no disease equals a short life, one disease a long life, and that is about if you know you have something you can watch it and yourself, but if you don't know you could just be struck down.
I watch what I eat, I sleep more, I walk a lot and I listen to my body.
This image is more immediate than I usually feel he is, he is smaller and more creeping in the shadows and watching, this does show the menace waiting and this nasty presence is MS for many people - it can watch and wait making small or severe strikes when it can, some nasty, some painful and often heartbreaking."