I’ve spent the day at Leftwing Idiot’s because there was no-one to stay with me at the castle. Leftwing Idiot had a lot of urgent work to do, so we sat in the same room and I went through my ‘to do’ list.

I haven’t got anyone to stay at mine tonight either, so before my morning carer came to drop me off here this morning I quickly packed some nightwear: I’ll be staying where I am tonight.

Leftwing Idiot’s amazing and always accommodates me quickly and without any fuss. Even though I wouldn’t have chosen to spend my Sunday exactly like this, I’ve enjoyed hanging out here and it’s been good to get some work done. Each time I had a fit Leftwing Idiot stopped what he was doing to make sure I was OK.

This evening he had his regular DJ spot at the Gowlett. I went as well, and my friend Claire came to be with me but I really need two people to support me safely, so I called Fat Sister and asked if she’d come to give a hand if I had a ‘ticcing fit’. She wasn’t that keen and said she didn’t want to come for long. I responded angrily and was suddenly so upset and tearful that I hung up on her.

My floods of tears weren’t really because of what Fat Sister said. What caused them was that I felt worn down by the grind of organising the relay race of support, and the constant compromises I have to make and ask others to make too. So many people give up their time for me, but often it’s not quite enough and I need to ask for more.

I often worry about putting people out when I ask for their help. Mostly I reassure myself that it’s their choice and if they’re not up for it they’ll say so. But with my sister I’m torn between those worries and a feeling of expectation that out of everybody, she should be willing to help when I need her.

It’s strange how easily I can slip into feeling I’m a ‘burden’. I know this isn’t how anyone else sees me and that I shouldn’t allow myself to start thinking I am. But there was a moment today when I felt like giving up on struggling to maintain my independence and quality of life.

Fortunately it was only a fleeting moment. Leftwing Idiot comforted me and I was soon able to overcome my distress and see the positive side of things. I called Fat Sister back and we had a heart-to-heart conversation, with fewer tears. She came to the pub later and we had a lovely time together.

I know there will inevitably be times when I feel sad, but I also know that I would feel a lot less happy if my life wasn’t as busy, rich and full of the amazing people that make it that way.