I was pleased with the response to my initial effort on Saturday but also noticed some misunderstandings even amongst my friend group. So my first snippet of chat here will be to express appreciation that people care enough to comment and note that the comments have given me my first topic – to set the record straight on a couple of things.
The first thing was that some people still think that CFS/ME may somehow be a mental health issue. Some of us, myself included, experience (unabashedly I might add) stress and depression as a result of losing our lives to this illness but it is not a mental health issue in and of itself. It is a biomedical neurological disease and quite often runs in families. I have a sister and an aunt who also have it.
The second is the idea that it will somehow get better, which is highly unlikely. There is no cure or even a treatment. We are given a set of tools to cope and to manage symptoms but the disease itself is not treated or treatable. I will almost certainly have better days, weeks or if I’m very lucky months but it is extremely unlikely that I will ‘get better’. Those stories of people attaining their former lives are wonderful for giving us hope but the reality is that they are few and far between and usually happen to young people. For most of us we may recover some levels of activity for some periods of time but the reality is that most of us are permanently disabled to a greater or lesser extent and the disease becomes a procession of remitting relapsing cycles.
The third misnomer was that I was having a particularly awful day on Saturday. I wasn’t. I wasn’t having a great day but then I rarely do. I also wasn’t having one of my worst days, by far. It was just another mind numbingly banal Saturday, spent doing the few tasks on my baseline and feeling tired and listless. And that is what I was trying communicate. The endless days not being able to live (I mean really live as opposed to existing) and the frustration, envy and invisibility that I experience.
Whilst the outpouring was lovely and appreciated, I did not hit my mark, it was not supposed to be about getting sympathy, it was supposed to be about opening people’s imaginations as to what life is like for people who live as we do, warts and all.
So that’s what this blog will be about…. a glimpse through the window as and when I can. The grossness, the humour, the anger, the sadness, the grief, the support and the gratitude. I hope to help myself and others.