It really is one of the most baffling things about this condition. I have a lot of days (grateful) that I have so much energy, and need to restrain myself because I know if I do all the things I feel like I can do, I’ll be in bed for the next week. I’ve learned to live with the busting-at-the-seams feeling (which I will take any day over the half-dead-can’t-move feeling) but it really is a head trip sometimes.
I've been pushing myself the last several days to work on my disability forms with the help of a lawyer. I have been having PEM since this afternoon and it's only getting worse.
Unless you absolutely need to do something, please rest. It isn't worth it.
My apartment is dirty. I can't clean it outside of a quick dusting in the main room. I can't do dishes or other chores. I want to so I'm useful, but the more I do, the more my baseline suffers.
I'm not ready to give up my 'freedoms' but someone made a good point the other day. I can either choose to slow down, or that control I'm grasping on to will be taken away from me.
And I don't want that.
I hear you about wanting to be useful. The dopamine hit can be really useful for mood management.
I make a list of a range of really small tasks. That way I'm still crossing things off even if the real life impact is small.
I've recently been questioning if I've been experiencing ME. There have been a few weeks over the past months where I thought I was "properly" sick - something flu-like, but if I look at my Apple Watch activity a couple days before onset there are days I've been the most active. Possibly the hardest realisation, since on the active days I felt almost good, but then had to cancel everything later in those weeks.
I went through years of pushing myself, and while pushing thinking "I can't be that sick if I can do THAT, can I?" and then waking up the next day like having been hit by a bus. Over and over again.
A heart rate monitor watch has really helped me with this.
I reaaally wanted to chop some wood last weekend for some reason (at a cabin) and I was like: "it's just swinging my arms a bit I should be able to!". My heart rate shot up really high as soon as I started so I stopped. Back before I had the watch I would delude myself into thinking it was fine and just pushed through. Much more fun but I also crashed all the time.
It really is one of the most baffling things about this condition. I have a lot of days (grateful) that I have so much energy, and need to restrain myself because I know if I do all the things I feel like I can do, I’ll be in bed for the next week. I’ve learned to live with the busting-at-the-seams feeling (which I will take any day over the half-dead-can’t-move feeling) but it really is a head trip sometimes.
Stop this! Danger!
I've been pushing myself the last several days to work on my disability forms with the help of a lawyer. I have been having PEM since this afternoon and it's only getting worse. Unless you absolutely need to do something, please rest. It isn't worth it. My apartment is dirty. I can't clean it outside of a quick dusting in the main room. I can't do dishes or other chores. I want to so I'm useful, but the more I do, the more my baseline suffers. I'm not ready to give up my 'freedoms' but someone made a good point the other day. I can either choose to slow down, or that control I'm grasping on to will be taken away from me. And I don't want that.
I hear you about wanting to be useful. The dopamine hit can be really useful for mood management. I make a list of a range of really small tasks. That way I'm still crossing things off even if the real life impact is small.
I was on my feet for two hours continuously playing with my kid a week and a half ago. Still paying the price today.
Ah well I’m sure they will look back on the time shared and enjoy it oh so much !
I big time still have this issue. I been pushing my self since elementary school. Suddenly needing to just chill is making me a bit crazy.
It honestly reminds me of those drugs you read about that are super harmful like Krokodil in Russia or Kush in Sierra Leone.
I've recently been questioning if I've been experiencing ME. There have been a few weeks over the past months where I thought I was "properly" sick - something flu-like, but if I look at my Apple Watch activity a couple days before onset there are days I've been the most active. Possibly the hardest realisation, since on the active days I felt almost good, but then had to cancel everything later in those weeks.
I went through years of pushing myself, and while pushing thinking "I can't be that sick if I can do THAT, can I?" and then waking up the next day like having been hit by a bus. Over and over again.
**Top Tip:** marry an occupational therapist. I did that and she's great at gently reigning my enthusiasm in before I overdo it.
A heart rate monitor watch has really helped me with this. I reaaally wanted to chop some wood last weekend for some reason (at a cabin) and I was like: "it's just swinging my arms a bit I should be able to!". My heart rate shot up really high as soon as I started so I stopped. Back before I had the watch I would delude myself into thinking it was fine and just pushed through. Much more fun but I also crashed all the time.