One of the things about chronic illness is that it goes against every single “overcoming” narrative. We know that a lot of things get better over time, so this feels like it’s a failure. It’s not. It’s that the risk to reward calculation gets harder over time due to the increased time to recover. For a lot of people this happens much later in life, but it’s been part of mine for 20 years (20 days short to the day.)

And it can be very hard as well when you make a sensible decision and feel better, because you think maybe it wouldn’t have been so bad. No matter how much experience says that no, actually, it would have been that bad. My foot starting cramping on my bus home and the last time that happened my entire right hand side started to cramp in the opposite direction to all the joints on that side. It was so scary I wound up being told I was having a panic attack but that’s because no one was there for what happened on the bus. It is something to see your fingers curling backwards and feeling the muscles down the front of your leg doing the same. It is probably a B12 thing, easy solution but I’m not tested regularly enough to track it.

There is a degree of unpredictability also when you have an immune system that detects very quickly and goes on the offensive very quickly. This is because bugs can spread before symptoms develop and that might be happening right now. My glands are usually sore but they are particularly bad today. I am obviously acting to protect myself but also I am aware that I’m far from unique in this, and I don’t want to be the cause of anyone else picking up whatever I might have. By the time I know what that is I’ll be in a transmission chain.

But today is a pause, take what ever I need to rest (heat is great, so too is a snuggly dressing gown, though the tie belt is a bit uncomfortable) and start again when I have a new chance.

I’m so excited to be able to focus on my pearl work. And I need to follow up asap about a potential hoard of pearls before my introverted self starts to doubt.

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