 |
| The reality of severe M.E |
I have variable good and bad days. On my bad days it can be a real struggle; my pain levels increase and I'm much more sensitive to light and sound. My mobility is also even more reduced also side worsened orthostatic intolerance and autonomic issues mean that I have to spend most of my day laid down. My cognitive function and brain fog is also more of a challenge. All these things are present most days but they're more pronounced on my bad days.
The things I can manage to do on a good or even average day is reduced so what I do to entertain myself is more challenging so I have to find ways to avoid boredom whilst managing my different symptoms and trying to also distract myself from how I'm feeling not just physically but emotionally too.
One of the main ways that helps me deal with my boredom on my bad days as I lay in a dimmed room is listening to audiobooks and podcasts on a really low volume and I often put in my noise cancelling earplugs to block out the painful background noise and then put on my noise cancelling headphones or my headband earphones so I can just have the low volume of my book or podcast playing to me. I also like options from the book I'm listening to and then the wide variety of different podcasts as I can struggle to focus on one thing for too long sometimes. Especially with podcasts there's lots of different one to choose from in terms on genre and topics whether it be a series or something like a documentary or a chatty style podcast and with these each episode has a different focus. This helps as generally podcast episodes aren't too long so that helps me with my concentration difficulties.
Usually I can tolerate listening to books and podcasts but if I can't because for example my noise sensitivity is too much or I can't concentrate or I just want something different to do I use my imagination. I play games in my head especially Carcassonne, a building strategy game. We have the actual game which I love playing when I'm able to so it's fun to play it in my head and work on my strategy for when I next play it with other people. Tetris is another game I play in my head. Something else I do with my imagination is to plan and build a house and design the architecture and then the different rooms and then put together the interior design.
I also enjoy mindfulness meditations which I do daily during my rest periods and again I like the variety of the different mindfulness meditations that are out there from visualisation meditations to breathing exercises.
The last thing I do in my mind is plan out future blog posts and videos for my YouTube channel.