Well the letter I have been waiting for from the hospital has arrived!! I could hardly believe it the appointment is for this coming Friday but, oh yes of course there is but, that haven’t mentioned anything about the transport that I need to get there, so I have been trying to phone all morning and the number just rings out without any reply for about an hour, when someone actually did answer they told me that I had to arrange that myself and gave me another number to call. Guess what engaged, on about my 5th attempt I am now in a queue, having waited that long to get into the queue I guess I will be waiting a while, so the phone is now on speaker as I type. I can see how this might work on getting to the hospital but how am I supposed to get home? If this is the system for that well I can’t see how I am expected to get home, no mobile!
I haven’t been looking forward to this from the start but I have to say I am looking forward to it less and less as they days pass. I know how tired I get when things go to plan, if they don’t, I am going to be a complete mess! The appointment is also in the morning at 9:30am just the getting myself ready for it will wipe me out…. They answer at last after 12 mins in queue. It many not be as bad as I was thinking what they will do is bring a stair climber which they will take me down to the ambulance the time they have given to me to pick me up is 8am, so I will need to be up around 6am to be sure I am dressed and so on, it will be an early start for both of us, I will need Adam’s help to get dressed as it won’t be just my normal nightdress and dressing gown day wear, well not quite suitable really. Strangely the bit that had been and still is worrying me most is the getting home again. In the past I have been to appointments where I have seen and spoken to people who have been waiting for hours to come home again. They say the system is now set up so that one hour from my appointment time they return to pick me up. That means that I should be home by 11 I guess, which isn’t too bad I suppose. I know that it probably sounds strange to some of you that I am so wound up about the whole thing, it isn’t seeing the specialist, that bit doesn’t actually worry me at all, I stopped worrying about Doctors years ago. It really is all the stuff round it, if you remember a few weeks ago the state I got into when Adam tried to surprise me by washing a wall, anything that upsets my routine throws me into a panic a feeling of being lost and out of control or everything, lost. A whole day that is disrupted is going to have me in a total mess by the end of it.
I have 4 days to try and get it all in my head but usually it works against me not for me, like anything when you have a long time to think about things, you build it into something it isn’t. Even knowing that, I know how my brain reacts in ways that it wouldn’t have done years ago, and having had people who were sat there in front of me explaining the damage that has been done and the things it will do to me, even knowing all that I still have no control, and no way of easing the problem. Brain damage is a crazy thing to live with, I have in the past explained it as two sides of my brain, at the minute it feels more like two separate brains. So you have just read the rambling mad brain, here is the straight logical one. Two men will collect me, take me to the hospital and bring me back, I will be out of the house for 3 hours. See I haven’t gone completely mad, yet.
A lot of people with MS fear the pain and immobility, I fear the growing damage to my brain. Years ago I did things on in pulse, my mind was fast and agile, analytical and funny as well. Now my emotions live on the outside I react badly to anything that isn’t identical to the day before. Tears are with me now as often as smiles and I have the memory of a gold fish and concentration of a flee. I feel myself disappearing into and blubbering heap of jelly that has no idea what words even are, far less how to use them. I can manage the pain and I am more than content with my mobility, but everything else terrifies me.