Well, I had the MRI, which was fascinating, and produced sensations of physical distortion, insects on my skin and the smell of hot grapefruit. The images showed very clearly the socket of my missing eye, and I think I have a very sexy brain. However, it was clear, which is both good and bad.

I was finally sent to see a neurologist, a bare three weeks ago, and he diagnosed migraines and prescribed beta-blockers. I was so depressed and dismayed by this it was all I could do to get out of there, and I did not tell him I had no intention of taking the meds. They make me act like I have just gone 10 rounds with Mike Tyson and I find the side-effects more difficult to manage than the illness.

I haven't really been keeping up the diary, as it seemed to give the illness too much importance and no one but me seemed interested anyway. And I wasn't particularly interested. I have been sick a lot recently, with skin that splits easily, nosebleeds, fainting spells, confusion and an inability to speak because I lose the words. Still getting hallucinations, but they seem more integrated now, I know they are there but don't notice them so much. I get the shakes real bad and have suddenly started having frequent nightmares. Temperature control has become a distant memory. Maybe it's premature menopause, which would be a laugh. Last couple of days my appetite has rocketed, despite the nausea. Today is the 23rd of February, 2000 and my personal tutor suggested a 6 month suspension of my registration on Friday. It has been 6 months since I got sick. I'm quite fed up with it now.

I cry a lot, feel isolated and lonely all the time. I have been declared medically unfit to live on campus and wish someone would get me a cat or a dog to sit with me when no one else is around. Unfortunately the owner of the house in which we currently live doesn't like such things. I'm still in near constant pain, and that's 6 months of near constant pain, sometimes excruciating, sometimes so debilitating I can't move without hearing myself whimper. I'm also very tired all the time, spend a lot of time in bed even though I don't sleep very much. Sometimes I can't get up for hours because my body will not do what I tell it to, it's too heavy.

I have a lot of junk in my head, junk that can be quite overwhelming even though I know it's junk. The fact that Marko has such a demanding job and is away all the time produces junk that says his job is more important to him than I am. I know it's junk, but that doesn't stop it making me feel hurt and angry. I told him about it once and that was awful because he didn't really understand what I meant when I said I knew it was junk, know it's junk. I spend a lot of time feeling abandoned - also junk, but the feeling is still there. Junk tells me I'm making all this up, that it's some sort of attention seeking plan. Not working very well if it is. The doctor says it's depression and the junk believes him even if I don't. No one ever told me that an illness could put junk in your head, and I can't begin to explain the frustration of having junk in my head. On bad days the junk tells me I am going to die, and sometimes maybe I think it isn't the junk - I'm not all that sure now. On good days it tells me I'm better and have been better for months but am refusing to accept it because I'm too weak and pathetic to get on with my life.

I really don't know how I would have coped without the fantastic support I have had from the nursing staff at the university medical centre. They ask after me, they don't make me feel like I'm wasting their time if I go in to let them know what has been happening and spend an hour crying to them about the same old things. They don't necessarily side with the doctors. They will suggest ideas as to what the reasoning might be behind the things the doctors have said, and they do know a fair bit more about illnesses than I do. On the other hand they are also supportive of decisions I make that the doctor might not support, for instance when I decide to try other forms of management besides drugs.

There have been times when I have felt ok. I suspect it would be a good idea to sit down and try to determine what those times had in common. Company is one thing, lack of pressure another. But it was not so long ago that I was sitting with a couple of friends, with nothing to do, and I was crying from the pain. The ok times never seem to last any longer than a week, two at the most. I define "ok" as being when I don't feel sick all day and there is sufficient pain free time for me to forget about it for a while.

Hysteresis? Probably. Please don't think I lack sufficient awareness to have thought of it. Perhaps some day soon I will manage to identify all the triggers and controlling factors. Then, even if I don't ever actually recover, then at least I will be able to control it. Whatever it is.