35. Lost Days.

I saw this post on X/Twitter by ME patient Whitney Dafoe yesterday:

“No one who hasn't experienced chronic illness will understand the devastating grief of letting go of another day of your life. When you try to be active, whatever that means for you, and you realize you just can't do it today, that you have to let the day go and hope for tomorrow.” Whitney Dafoe

This is something I understand very well.

This week, the activity I’ve been hoping to do is tidy and reorganise my cat, Smorky’s, toy boxes.

Saturday was my birthday and my mum took me out for a short drive. We had a tea and cake picnic under some trees about three miles from where I live. I was out for one hour and forty five minutes. This was the first time I’ve left my home this year. Of course I knew that PEM was a possibility (the worsening of symptoms and loss of function after overexertion, and the defining symptom of ME).

I decided on Sunday that I wanted to organise Smorky’s toys, but I was extremely unwell with PEM after Saturday’s outing, so I thought, “maybe tomorrow”, and let the day go. On Monday, I was still far too unwell. On Tuesday, I felt a little better, but I still didn’t have the energy, strength or stamina. Today, Wednesday, I felt better, back to my ‘normal’ level of unwell, and I was able to do it.

I had three lost days before I was able to do a ten minute activity.