just like buses

Everything comes along at once. Weeks of sleeping and chatting and wondering about housework got replaced by a mad flurry of activity- all the bits and pieces of things I’m interested in coincided, creating a few days of sheer exhaustion.

I was involved in policy meetings with civil servants about rare diseases. I helped at a support group for families with PSP. I talked about the experience of neurology patients/ carers at a refernce group. And on the fourth day I slept, missing another meeting.

All of the meetings were positive, but subsequently I needed to lie down in a darkened room, in silence, for 90 mins after driving or meeting. I don’t often do silence, but sometimes sensory overload requires it. Sometime I will find a balance between what I want to be doing and what I can do.

Until then, I’ll just be glad that I’m not simply running about doing random ‘wouldn’t that be a good idea’ things. The activities of that week, and of the rare disease partnership in general, fit in with the principles of action that I heard about at a public health conference (oh, we’re good).

  • improve conditions of daily life
  • tackle inequitable distribution of power, money and resources
  • measure the problem, evaluate

That week, we shared phone numbers and sandwiches and gave family members a chance to meet up, learn, support, and cry. Important as this is, our strength is that we can do more than tea and sympathy.

We reached agreement to work with the health and social care board to develop a care pathway for a rare disease.

We’re negotiating the development of a collaborative investigation into community based care.

We’re a small, active group. We rely totally on volunteered or donated time. Individuals may run out of steam from time to time, but we can still take things forward.

Although sometimes I’d need one of those buses to lug my weary brain around.

image from TfL


This all happened before the advent of The Placebo. It will be interesting to compare the next chaotic week…


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