Everything labeled ‘Don’t move’

I found myself this morning once again tiding up as I went to get myself a glass of coke. Last night I had moved one of the candle holders a few inches by accident and without looking or thinking I returned it to the correct position. As far as I can remember I have always liked things being in the right place, I can’t see only a few reasons as to why once placed, anything would ever need to move from it’s home, to somewhere else. Everything is mapped in my mind and if asked I can locate without thought exactly where the item can be found, in some cases I could even tell you where it was in each of my last homes. I thought it was OCD for years until the MS label appeared. The lesions have caused damage to my brain and it now demands order, it isn’t just frustrating finding something wrong, it can be scary.

The worst episode of this is burnt deeply into my mind, I can’t remember ever feeling so scarred and lost at any other time in my life. It was several years ago when I was still going into work daily. I had been involved in planning some changes to the lay out of the Call Center but because of my health I didn’t go into the office that weekend to help move the desks around. I had the plan and I thought I was comfortable with it, why wouldn’t I be? I arrive at work as normal at 5:30 am, after resetting the alarm and checking that everything was OK with the switch as I set some new programs on the Friday. I printed a couple off and sent the other to my network location, then walked to the Call Center reading my reports. I turned the corner from Admin to the Call Center, looked up and found myself feeling completely and utterly lost and terrified. I really didn’t know where I was. That step out of Admin had brought me into an alien place. I slowed my breathing, closed my eyes turned back to face Admin, then tried again. On opening my eyes I saw a room that I knew, I was comfortable and at ease, I turned round again and there it was, that alien world, nothing was where it had been planned to be or where it had been before.

I started to shack and tears ran freely, I tried hard to find my desk but at first I couldn’t, I then found it just 2 steps from where I was standing. That was my PC but on the wrong side of the desk, every thing else was piled up in the middle. I couldn’t stop shacking or crying although I had found this I still didn’t know where I was and I knew that was stupid. I spent the next hour trying to set my personal space as something that I would be comfortable with, but it wasn’t really working. At 7:30 am my assistant arrived and even then my distress was clear to see. You can’t cover-up the presence of such a strong feeling up and I couldn’t explain it then or now. Thinking about at this second it still upsets me, I really thought that I was going mad, there was no other explanation. The change to the plan had been unavoidable but that didn’t help either, I just had to get on with the day and try to be normal, when 3 hrs later my boss called me in, I knew I was failing. She was angry with me as I couldn’t explain it and she didn’t understand it, the stalemate remained and work went on as normal, well sort of, it took me nearly a week to stop feeling lost.

That strength of feeling has to date not happened again but it does happen daily in tiny doses, just one of the things that effect Adam more than me. I don’t notice my constant corrections of item placement, he does and as I can no longer manage the housework he has now photographed every ornament so that he can replace everything correctly once cleaned. MS is a scary illness as you don’t know from one minute the next what will happen. Terrified, collapsed on the floor, wetting yourself, limbs unable to work properly, pain, numbness the list continues, and any or all can appear with no warning, all I can do is try to keep my world in order.