Today is Rare Disease Day, an international day that aims to increase awareness of conditions that affect relatively small numbers of people. People with many different rare conditions have posted their experiences and stories online to help promote understanding both of the many different conditions – there are over six thousand of them – and of the additional challenges facing people with rarely seen diseases.…

A few weeks ago I mentioned that my long-standing biscuit tic was becoming increasingly rare. It hasn’t gone completely but I’m saying it a lot less than I did. Instead I’ve been ticcing a lot about “Sheep”, “Women” and the strange Tourettes invention, “Win-Bin”.…

Since I started having ‘ticcing fits’ back in October I’ve been recording how many I’ve had each day and how long each one’s lasted. Every night I enter the numbers onto a spreadsheet. The other day Leftwing Idiot suggested it would be possible to generate some random lottery numbers from all that data and I really liked his idea.…

When I was sitting in Leftwing Idiot’s kitchen this afternoon while he prepared lunch I found myself absentmindedly counting the leaves on his geranium. It’s not unusual for me to start counting stuff like this when I have a spare moment.…

Last year as my mobility deteriorated I described watching a lovely day drift past and how sad I felt at not being able to go out and enjoy it. It was particularly upsetting because I knew it was a situation that was likely to repeat itself again and again if I stayed living where I was.…

A few days ago I wrote about how my support arrangements had to change at short notice because so many of my friends and support workers were ill. Today there’s been another last minute change, but this time it’s because I’m not well myself.…

This afternoon I went over to the nature garden (one of three projects run by the organisation I work for) where I was greeted by a colleague who told me very excitedly that the frogs had arrived. This is brilliant news.…

I went to the Tate Modern this morning for a meeting about some work I’m doing there. Because it’s a massive building and I needed to do a fair bit of moving about I used one of their complimentary wheelchairs.

When we went to get a lift to the upper floors I noticed a large sign next to it that said:

“Celebrate your ability to use your legs and please give priority to those who need to use the lifts.”…

It’s Leftwing Idiot’s turn to support me during the night tonight but because he’s not been very well for the last few days and still isn’t 100%, I’ve come to his flat for the night so at least he can stay in his own bed.…

The other day I wrote about the strange breathing I’ve been doing recently. I’ve been feeling short of breath, and having to breathe much more deeply than usual. To start with I tried to dismiss it as just another tic but this didn’t ring true.…