Saturday, 9 May 2009

Tigers and Tribulations

'When we tell our stories, we change the world.'
Brene Brown

I never wanted this blog to be about living with chronic illness, but that is what my life seems to be about at the moment. My counsellor is always telling me that one of my biggest problems is that even now, after over ten years, I have failed to accept that I am ill. I suppose she is right. I keep thinking I ought to be better by now. I ought to be able to pull myself together, to control it. But it keeps creeping up behind me and jabbing me in the next with a tazer.

Take this week. I have been 'confined to barracks', trying to get over the journey home from Scotland. Eleven and a half hours with a nasty cold coming on. Even without ME, that would have been a nightmare. A friend who lives in Edinburgh is upset we didn't go to visit. Three hours in the car when we only have six days holiday and an eight plus hour journey either end? I couldn't face it. Why, then do I feel guilty? And why do feel feel guilty that the floor hasn't been hoovered in weeks and the house is a tip? Its all I can do to keep up with the cooking and the laundry.

I'll think I am okay and then it hits me. I can't hold my head up. I can't hold my hands up, so I can't hold a book. If I try to read, I can't remember what the beginning of the sentence was when I get to the end, never mind what the previous sentence was about. My eyes feel sticky all the time. My shoulders and neck are a constant source of pain. My feet throb, and when I walk the soles feel as if they are heavily bruised. And don't even get me started about my guts!

Can you tell me why I still think I ought to be digging the garden?

On Friday it was a beautiful day. Sun out, stiff breeze, the leaves on the trees thick, and the blossom gorgeous. Pat seemed melancholy. A friend had posted his photos of a visit to Banham Zoo on Facebook. That's a good idea, we said. Why don't we go too?

So we went.

Never mind that I had been out for the first time in a week the previous day, had driven for the first time in a fortnight. I just assumed I was better.

You have to walk a long way to get round a zoo. The tiger enclosure is a long way from the meerkats. Okay, maybe not so far for someone in good health, but for me it felt like doing a marathon. By the time 5 o'clock came, time to go home, I was so exhausted I could no longer speak. We drove home in silence. Even so, I stumbled round the Co-op getting food for supper. By the time we got home, I was all but catatonic. Pat offered to cook. I have rarely been so grateful. I went to bed.

He is tolerant, my husband. And kind. But I don't think either of us have really got our heads round this thing. It's wretched and I hate it. The harder I try to recover, the longer it seems to go on.

So now I am back to square one. A week of resting, and I'm no further forward. But the meerkats were lovely.

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