Imagine a pit. Deep and dark. You know you're sliding in because the medication did it before and you also know you’ll slide in again. This time it’s a bit deeper and a bit darker than before. Next time it might just be even deeper and even darker. This really pisses me off. So I look for sanctuary.
I don’t know if sanctuary is a place or a state of mind, it’s probably both but I can’t find it easily. I had it, where's it now?
I think I want peace. For me peace comes in lots of different ways. Quietly holding hands or maybe just lying on my bed listening to little noises of normal life going on around me. Sometimes it's walking, sometimes it’s watching TV without comment or interruption. I don't always know what I need but I know when I’m not getting it.
Some people must have to cope with this on their own. If they can they're tougher than me. I cope because there’s two of us facing this together. Completely different outcomes for both of us both, grim in different ways.
I’m acutely aware of my circumstances. I’ve become adept at diverting my mind away from the inevitable but it’s hard. It takes all my inner resources. Sometimes there’s just nothing left.
The balance is really fine. The smallest irritation becomes unacceptable. I’m becoming unwilling or unable to accept change, why should I anyway?
So, as my illness progresses my need for sanctuary increases and my ability to find it diminishes. In part I want silence, peace. I need to be alone but I’m afraid of being lonely. Don’t worry I’m not!
My sanctuary has become my bed and my being in bed. Any time of day, maybe all day. It’s becoming the only place I feel I can just be.
................... Well at least you now know what my weekend's been like. I still feel like I’m in the pit but this morning the walls seem a little less steep.
So what next? I’ve one week before my treatment starts again. Really it seems that with these difficult days I have one week that’s ok and one week that’s not. If that good week/bad week ratio changes much more I'll need to resort to some kind of horrifying cost/benefit analysis because without treatment I may not get the bad days and that could be a good thing.
It’s Monday morning. It seems I have my home to myself for a while. I sit quietly tapping away at my device. I’m thinking how I’ll carefully approach the day. I'm careful because I’m skirting the pit. I have three activities I'd like to achieve today. I want to make a cake, a ginger cake. Ginger can help reduce the feelings of sickness that I often experience, so I’ve got all the ingredients out ready. I would like to finish changing the door handles that’s been an ongoing pain, and I would like to top up the motorhome with LPG.
Let’s see how I get on because tomorrow is Coffee Club and I need to get my happy face on.
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