How deep is remission?

Someone once said to me “MS is a companion, but not a friend.”

These words ring true. I have been in remission for a while now, but I still haven’t shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.

The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel “normal”, and the crushing and squeezing in my feet and calves won’t start until later in the evening.

The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let’s just look left for a second, I tell myself… yes, two plant-pots instead of one.

Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.

You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it’s usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.

Then of course, there are the times when I forget to take my tablets for a few days and it feels like I’m holding a cactus anyway.

This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn’t stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.

I guess there is no easy way to guage where remission begins and relapse ends as everything is there still – making it’s presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.

The next move they make could be tomorrow or it could be in twenty years time.

Whenever it happens, I like to think that I will be ready psychologically.

weirdness

been quite stable for ages – just the come and go of pain and fatigue.

Today, I feel a bit weird.

It feels as if the side of my head is undulating and my right leg feels a bit weak – definitely something up, will monitor. May go away in a bit. Come to think of it – this morning my foot felt ice cold.

Hmmmm…..

Psycho swat team

I caught something on TV the other night about someone who had a minor stroke while on holiday in the UK. As a result, he could no longer read when he woke up. He knew the individual letters on his hotel shampoo bottles, but couldn’t string them together into words. Even though they were written in English, he was convinced they were written in a foreign language.

While this in itself is odd, the thing that struck me was that he informed his wife he couldn’t read, She didn’t believe him and he put it to one side mentally. He then just carried on as normal until later when he had to read something else and it all came back to him.

This reminds me of the time I first noticed my doublevision. I can’t put an exact date on when it happened, other than it was March/April 2008 and I was at work when I noticed it. I found it odd and I tried to put it right by trying to un-cross my eyes. When I found that I couldn’t, I just carried on doing what I was doing, double-checking it was still there every now and then. I think I thought “It’ll go…” until a few days later when it obviously wasn’t going to go. Nearly a year later it’s still there.

I wonder if the magical brain somehow cushions the shock caused by the injury by despatching some sort of psychological swat team – convincing the mind that the doublevision or inability to read is a normal thing and to carry on as normal. And I wonder if the man with a stroke would have noticed his inability to read if he had been at home instead of on holiday. I wonder if he would have carried on as normal for days, avoiding books or newspapers before it started to bother him.