Here I am again with a monthly link up with A Chronic Voice. As always, these prompts often ‘allow’ me to write a few things that don’t make a whole blog, but feel good to talk about.
I recently bothered to make the effort to join a virtual ‘Migraine Meet Up’. Just before lockdown started, I signed up as a volunteer for the Migraine Trust. Initially I was chomping at the bit to get going but apart from a few emails I felt a bit disconnected. However, I then bothered to take part in a Zoom (still find it strange that this is now common language!) somewhat enabled by the Migraine Trust. There were staff there from the Trust but just as I like things, it felt pretty lineal in terms of hierarchy; just a few people having a chat. Since then a WhatsApp group has started up and now we message most days. I’m so glad I bothered to take part; to put aside my fear of any increase in symptoms from doing so, and take a step to ‘finding my tribe’ in the migraine world. It has made me feel more connected in a way I wasn’t even aware I was missing out on.
After my neurologist appointment was cancelled, I found myself making demands of my GP which, to be fair to her, she took in her stride! I’m back onto trying drugs rather than injection options I had hoped to discuss with the neurologist. That demand will have to wait until they decide to give me another appointment.
This word always makes me think of food! I know there are lots of ways to nourish but food is definitely my go-to. After months off the narrowboat we live on due to lockdown and getting the boat lengthened (see more reasons here), we’ll be moving back on imminently. I am thinking a lot about food for this time – what food needs eating up, how we transport the food back to the boat and most importantly, how we can still eat tasty food while this all happens!
It’s funny the things we all tolerate, and then what we each do when we decide not to. Is the answer just to turn our heads, or cut off completely? Or do we take more drastic action? When it’s our own bodies we have to tolerate, it’s hard to turn our heads. We’ve all ignored symptoms, as well as got worried when everything was fine.
I remember reading something the Dalai Llama said about kindness to others and my assumption was that he might be a ‘push over’ if he was always kind; perhaps he tolerated too much. But actually he talked about the need to push back; to not be walked over because that does not achieve what needs to be achieved, for the good of everyone. I was not tolerating what most people think of ‘regular life’ and now live a very different one. I’m glad I pushed back, and now I can tolerate my neurological disease on a different, more acceptable level.
That’s it from me for now, please do have a look at some other linkups from other fabulous bloggers (scroll down to below the prompts). As always, comments below are welcomed.