It’s very rare that I write a whole post on my phone, in bed. This is only the second time I’ve done it at 1:00am.

As I mentioned yesterday I’ve been ill and so has Leftwing Idiot, who provides a lot of my care. Because I’m not well I’ve been having many more ‘ticcing fits’ than usual and this is putting a huge additional pressure on him when he could do without it. I’m staying with him tonight because I’m too tired from ticcing to get home.

Although we’re both starting to feel a bit better, the last week has been exhausting. Tonight Leftwing Idiot said, ‘We need to come up with a better plan for if you’re unwell in the future.’ He’s right. It’s been horrible being unwell, but much worse seeing the extra strain it’s put on him.

I’ve just worked out a way to put enough money aside from my DLA and individual budget over the next few months to cover 24-hour agency care in an emergency. I’ll also get back in touch with my social worker to see if she can help. But while I’m pleased I’ve started making a plan I still feel overwhelmed by sadness.

During stressful times like this I feel incredibly anxious about my dependence on others. Tonight I felt a rush of frustration – while Leftwing Idiot washed up and Poppy made dinner – I wasn’t able to contribute anything. This feeling intensified when we realised we’d forgotten to get a much-needed ingredient. I wanted to go and get it myself but I knew I wasn’t mobile enough to do that.

That I don’t feel like this more often is a testimony to the unwaveringly sensitive support I’m shown by my friends. But, I do sometimes feel a pressure to keep these moments of sadness to myself because sharing them seems ungrateful.

As I lie here, tired, unable to sleep, and crying, I feel myself sinking into self-pity.
For me the fear of being a burden is never far from, my mind. I’ve got a choice about how much I worry about this, but not getting upset by it is often a battle.

I’ve allowed myself a little quiet cry and now I’m going to banish the burden idea from my mind.

I’ve just been to the bathroom to wash my face and noticed Leftwing Idiot’s put a towel over the back of the toilet so I don’t hurt myself if my head bangs on it. This small observation reminded me of all the care and thought I’m shown many times a day. It doesn’t come from duty or obligation, but from friendship.

I’ve settled back into bed now and I’m going to let my body and mind rest.
The sky I can see from Leftwing Idiot’s backroom window is thick with cloud tonight but I know my old buddy cartoon star is up there somewhere, shining away ostentatiously. And this thought has me smile.

“Goodnight star.”