Lost and terrified at home

I have done it again found myself sitting here knowing that I had a subject I wanted to write about and now I can’t remember what it is. Today though I am going to blame my friend Tracey. We had about half hour chat this morning, with her now back at work and my wacky waking hours catching each other has proved harder than I thought, it hasn’t been helped by the fact I frequently switch the sound of on my PC, so I couldn’t hear the alert when she was sending me an IM to check it was OK to call. We have decided to talk most mornings so that should sort the problem as I have a set time, 13 yrs is a long time to catch up on. I feel at a bit of a disadvantage as I know Tracey has read most of my blog, it’s a little hard talking to someone who has had a window into your life and you have just a big gap in return.

To anyone who doesn’t have a condition that effects their concentration, memory and emotions it is probably hard to imagine the strange effect everyday things can have on you. My MS has caused lesions all over my brain and as you know different area’s control different things, one of the problems I have now is that I don’t deal well with change, in fact change can be really scary and I need to feel not in control with a situation, but comfortable with it. For example I need to know when things are happening, I don’t deal at all well with surprises, I get highly agitated if someone comes to the house without giving me notice. It is preferably that they let me know the day before, if not at the very least an hours notice.

Brain damage is difficult and different depending on where the damage is. For me the logical side of my mind seems to be OK on it’s own, but it’s link to my emotions is bizarre, it is almost as if they fight each other. I can see a situation and logically know it is OK but me emotional side starts spinning me into erratic feelings and reactions. The more it winds me up, the worse the muscle twitches and spasms, I become confused and anxious although I know I am safe. I will feel terrified and it will spirals until I can find my way back to normality. It doesn’t always work, but sometimes if I distract myself by normality, I can pull myself out of it. I go and make coffee, tidy the kitchen anything that I would have been doing at that time on any other day. Keeping my world calm and ordered has proved to be the only way I can stay in control of me.

To tell you that I can be looking at some ornaments on one of our tables, and I will start shaking and panicking because something it wrong, will sound mad. Especially when the cause will click and I turn one of them round by a fraction, and everything is fine again. Adam tries hard to keep my world ordered, he has even taken photos on his phone of every surface in this house which has anything displayed on it. When he is cleaning, his phone is with him and before he finishes an area, he checks that all is where it should be, well as close as he can.

I as you know can’t physically go outside any longer but the whole idea of the outside world now terrifies me, I know life has carried on and even form my living room window I see changes. The idea of trying to find my way around the city, were shops have come and gone, things have changed colour and new buildings added is now overwhelming. Logic tells me I would be fine, but I am sure I would just become a jabbering wreck. Like so much of MS, the problem can’t be seen by others, no one can tell by looking at me, that the once confident woman who took the world in her stride, now couldn’t even cross my own threshold without tears flowing and my body shacking. I’m not scare of the open space, from what I have read this isn’t Agoraphobia, because people, shops and so on don’t scare me, it’s them being different from my last journey outside that is terrifying.

Putting this into words has been hard, it is as hard as trying to explain love, feelings don’t translate into words easily, I just hope they have translated slightly.