How far I’ve come. A route through chronic illness.

Mood: scary fun. A smiling suspended woman with crash hat and safety clothes holds the hand of a smiling man who seems to be pulling her down. It looks windy and there is a feeling of empty space (it is a zipline)
I experienced this zipline on April 7th, 2013, achieving a speed of around 105mph. Decided it was a good fit because the organisation that facilitated it claimed that the fact that I had done it (and some but not all of the other experiences on offer) was an indicator that I was not disabled. We settled out of court, but I often wonder if I should pursue it further, mainly because the settlement itself displays an amazing lack of understanding of chronic illness, but also because I have unused evidence proving that the discrimination went far further than they claimed.

Suffering from long covid? A chronic illness? The feedback I got after sharing this on facebook a while ago made me think it might help others if I posted it here.

It is so good to feel less ill. That’s a strange thing to say, I know, but I’m just recovering from a relapse that took me back to how I had been for years. Back to when I felt desperately unwell all the time, and the times when – on the rare occasion I felt OK – I would stay as still as possible for the hour or two it lasted, not wanting to do anything that might make the better-feeling go away.I’m not sure when that stopped, but it did. Don’t get me wrong, I still feel unwell most of the time, but getting a relapse has brought home just how much better the Carole-who-is-unwell is today than the Carole-who-was-unwell 18 months ago. Looking back on the decade since chemo I have no idea how I got anything done at all. I’m not back to the luxurious Carole-who-was-ill of a month ago, but I’m better than yesterday. Back to mostly being well enough to think, and thanking my lucky stars that it is so.

From a friend who is twenty-odd years ahead of me in recovery; “The relapses are hard, frustrating and so bloody scary because you don’t know when they might end or if at all. The relapses have finally diminished in length, frequency and severity. By the way, did you hear that at least one of the COVID inoculations is helping reduce CFS/ME symptoms?”