The facts about people

It still feels like every day is 10 hours too short and that I am no sooner out of my bed and I’m back there again. It has been such a strange week for me as Laura, my main carer, has been on holiday and I have had the joy of trying to get along with a complete stranger again. It could have been worse, as they wanted to send me not one new person but two, as Maureen, Laura’s replacement, couldn’t cover all the days. I quite simply couldn’t face that. The stress of one stranger had been more than enough, and I couldn’t face the idea of yet another one so soon. I know that to some that simply doesn’t make any sense. What could possibly be so difficult about having another person here to look after me, especially when there were several days separating them? For me, that’s a complex thing to answer, as it is a feeling that has appeared over the last few years. Having to say “no” to the agency was a simple to justify in my head. What is the point of having someone in your home to do things for you, when you have to be with them every second telling them what needs doing and how to do it. As Maureen was to cover all the other days, well that made sense, but someone else for just one day, that made none. It is the other part that is really so difficult to explain.

I have almost always found both strangers and crowds difficult. Which OK sound strange from a self-proclaimed extrovert. If you had seen the way I dress and acted back in the early 90’s, well you would never have guessed that inside that gregarious DJ, was someone who was shit scared nearly all the time. I had learned that if I put on a show, that that act allowed me to not show the truth. My work protected me from everything else, not just because there were bouncers all over the place, but my DJ booth meant I lived in a perfectly protected zone, one that no one else ever enters uninvited. Admittedly, those 7 years of working as a DJ allowed me to be the most extreme version of me, but that act started long before and still goes on to this day. When I don’t know people, and I am forced to be around them, well I panic, I get into a muddle, one that my health has now made so obvious, that I can’t bear having to go through it at all. These days I stutter, get wound up, drop things, forget not just my words but what I am doing and far more. It hurts, really hurts to be exposed in that way. This is the reason that I go nowhere without Adam by my side. But asking Adam to come home, to protect me and to keep my carer in line, well that would have been really mad.

I have often wondered if it is just me that has found that living with a chronic illness somehow magnifies all the quirks of our personality. Mind you, for me that is hard to know really which is which, as I was 21 when they think that this illness first got hold of me and who I was before that, was a child. But my inability to deal with strangers is something that has really grown over the years and the idea of being caught here in my home alone with one, that really freaks me out. It’s crazy, I know that, but emotions are always the one thing that none of us have total control over.

When Maureen arrived on the first day, well there I was all smiles and ready to show her how everything worked and what I needed her to do for me. What she didn’t see was the wreck who had been building herself up to being able to just say “hello” for the past few days. Once I had shown her everything, although I was only going to have 5 mins alone, well, I couldn’t get out of the kitchen fast enough and back through here to hide behind my computer while she finished things off. On day two, I let her in and hid straight away. Why I thought she would remember and get everything right without me, I don’t know, but that was my hope. I was of course wrong. She kept appearing in the living room to ask this question or that one and after she left, I found mistakes all over the place. She is due back tomorrow to make even more mistakes, as I simply can’t deal with the idea of taking her through it all step by step again. I will mention the biggest ones but I am still going to let her get on with it as I’d rather have shoddy than spend another half hour shaking and stuttering as I lose track of everything else again. When my health didn’t get in the way, didn’t exaggerate my every action, I would have acted my way out of this mess, but now, now I just hide and count the minutes until the whole mess is over with.

It took me about a month to totally settle myself to Laura, but it did happen eventually, and now, I fear the day that she will tell me she is moving on. I know it will happen, as she is a bright intelligent woman who has a degree and without a doubt, one day she will see that she really could be doing something that actually pays her a decent living wage. It is so wrong that our carers are paid so badly. I can’t afford to employ her directly and anyway I don’t need her 24/7. So I know the day will come when I have to face having to start all over again and I so hate that idea, especially after this week.

Laura has told me several times that she really can’t manage all the bills on what she earns. So in a bid to keep her here as long as possible and to help her out a little financially while Adam was unable to do the housework, I employed her several times outside of the system, to clean our flat for us. When I told my friend Jake all this he suddenly came up with an offer of cleaning work for her, from one of his friends. They told their friends and the ball started moving. She is now cleaning three of his friend’s houses every week. Money in her pocket on top of what the agency pays her and hopefully enough to stop her thinking of leaving me yet, but I’m not stupid enough to think it will last for ever. Well, nothing ever does.