Why bother?

Now, there’s a dangerous question, & one that’s been in my head a lot recently.

I want to be useful, doing things, making a difference. I need to rest, recover, not get involved. Sometimes I balance competing demands. Sometimes I run out of steam & interest. Sometimes I want it all to stop.

I’ve spent years trying to be heard and in the process have become a usual suspect. I’m on a list somewhere, invited along to things, my opinion apparently sought. Of course I’m flattered, but sceptical. I can’t keep track of all the agendas in the room. I’m not being paid to be there- is it a good use of my limited energy, or a fig leaf for someone who has a boss?

I can read books and walk on beaches and ignore the world. That feels good for a while. Then I have to get back to doing the things I’ve had to fight to be able to do.

And I wonder if that’s the right thing for me.


Thanks to David Gilbert for the post that prompted ‘why bother’ https://futurepatientblog.com/2017/05/14/lets-talk-about-death-breaking-the-taboos-that-surround-suicide/





I haven’t been writing much. The notebook is full of headings, prompts, ideas. When I come to turn these into posts, they become the actual words in between the photos. That’s not quite what I want to be doing, but this ‘summer’ is different. I’m not joining the dots.

This time last year my head was full. Herself had just gone and died on us. I was in shock, in turmoil, and in physical pain. I was exhausted, but my brain was buzzing, trying to process the new world order. I wrote and wrote.

These holidays, my world is calmer. My brain has relaxed. I’m still fatigued, but with ME, that’s not going away any time soon. Physical pain is confined to my limbs- the chest pain went away in time. Everyone said it would.

I’m not crying- just a discreet drip after we left the Brother’s family, having had a week together sitting about blathering while cousins caused chaos. A wee drip, sure it was hardly worthy of the name ‘a cry’.

The not buzzing brain means I’m not using the blog to work out my thoughts or to vent as much- well, not until now…

People who know me have said that reading my blog is like listening to me chat. I quite like that, but maybe that’s not all it could be. Then again, attempts at writing about anything other than me and mine have been neither successful nor rewarding.

I’ve been on holiday and my mind had switched off. That’s a good thing. That is- I’ve been lead to believe- perfectly normal.

I have a paper to write for the rare disease partnership. There are plans to plan, events to attend, people to persuade. My mind will kick back in as best it can pretty soon.

This blog will develop as it develops. There will be muddling and chaos and music and book reviews and woes. There will be photographs to attempt to capture what I don’t have words for.

I’ll just keep on trundling along. This blog does what it says on the tin…