Whilst looking at the FNDFrieNDS twitter account this morning, I came across The Chronically Awesome Foundation, an American organisation which strives to reduce the social isolation using the arts, with particular focus on crafting, blogging and photography to name but a few.
I was particularly taken by some ideas, thoughts, questions, and ways of coping with the myriad of emotions that an altered life can produce. One section, entitled Why ask Why? looks at how, when diagnosed with a chronic illness it is very easy to spend a lot of time looking back, grieving for the life lost. Why me? Why did it start? What could I have done better / differently? It draws a parallel with looking in the rear view mirror. Is there any benefit to be had doing this? Will it change anything? Unlikely, although it is very hard not to. For FND patients, this can be made particularly hard if health professionals, especially neuropsychologists and neuropsychiatrists, insist on looking into past events. Having said that, a good basis for starting a diary or blog would be to write down frustrations, sadness, lows and highs. Write until there is no more ‘why?’. Until you are ready to consider what might happen today, tomorrow…..
Yesterday I attended the 1st anniversary meal for FND FrieNDs, where there were at least 14 of us, including some new members. It was a lovely evening, and for me came at the end of a very tiring, stressful week. It was really lovely to see so many people make the effort to come and celebrate the transformation from Bristol FND to FND FrieNDs. However, I have been exhausted today. What have I achieved today? I managed to get out of the house even though I could have easily stayed in bed. I have made some more cards, despite not really having the energy. Would I ordinarily consider this as an achievement? Not really, but having read this website, I now see things in a different light.