Deterioration? Scared

[serafim]

I’m so sorry you’re going through this. It’s so scary, not knowing whether you will stabilise or improve, not knowing how low you can go.

I’ve been sick 20 years and had lots of different baselines. I’ve had crashes for a few months and managed to recover to my long term functionality. I’ve had a very bad year and lost a lot of functionality, markers of my life, and my independence, but I might improve again. I tell myself that things can change. But my goodness the uncertainty is scary.

Sending you a hug.

have you ever been very severe? i deteriorated from moderate to v. severe 8 months ago and haven’t gotten any better

 

[elliem]

have you ever been very severe? i deteriorated from moderate to v. severe 8 months ago and haven’t gotten any better

No, not really. In a bad crash I can be very severe in PEM, need help with toilet and feeding etc. But I’ve never had that as my baseline. From memory of the Bell scale, my long term baseline has never been lower than 10.

Knowing about what very severe is, how deep the suffering, how total the loss of function - I am humbled by those who are in that state, in grace or anger or however. And it is a sobering reminder for me to pace, when I am tempted to go beyond my energy envelope. I have so much more I could lose.

I hope you have found a stable baseline. Or even better, had some improvements.