I am so very sorry you are still suffering, MinIreland. It is not right and it is not fair.
I would echo the comments of others not to pay too much attention to your heart rate, unless you have found that it give you an early warning to stop doing something that you would otherwise continue and that you have found to make you worse. Heart rate changes are really individual - both in what is "normal" and in what causes symptom exacerbation. Some pwME find that by keeping their heart rate below a certain level, they can avoid PEM, it is true, but some people find that there isn't much of a relationship at all - high BPM doesn't mean PEM and low BPM doesn't mean they're safe. One seldom really knows. It's worth noting patterns when they emerge, but I find monitoring too closely can be its own stressor.
For most of us, I think it is generally true that heart rate is more volatile when in PEM or a crash. It certainly is for me.
What is important is how you feel - if something makes you feel worse, try to either avoid doing it or limit doing it as much as you can stand.
Stairs and showers are really, really rough for a lot of people with ME, even some of those who are very mild indeed struggle with these. Avoiding stairs can be really limiting, sometimes impossible. Avoiding showers can be emotionally crushing on top of everything else. I am really sorry.
For me, PEM always feels like forever, and each passing day or week seems a promise that it will be. It can lie.
It is not fair. It may also pass. It can certainly improve.
I am so sorry you are hurting. I wish you strength and resilience in abundance. I wish you better things.
I would echo the comments of others not to pay too much attention to your heart rate, unless you have found that it give you an early warning to stop doing something that you would otherwise continue and that you have found to make you worse. Heart rate changes are really individual - both in what is "normal" and in what causes symptom exacerbation. Some pwME find that by keeping their heart rate below a certain level, they can avoid PEM, it is true, but some people find that there isn't much of a relationship at all - high BPM doesn't mean PEM and low BPM doesn't mean they're safe. One seldom really knows. It's worth noting patterns when they emerge, but I find monitoring too closely can be its own stressor.
For most of us, I think it is generally true that heart rate is more volatile when in PEM or a crash. It certainly is for me.
What is important is how you feel - if something makes you feel worse, try to either avoid doing it or limit doing it as much as you can stand.
Stairs and showers are really, really rough for a lot of people with ME, even some of those who are very mild indeed struggle with these. Avoiding stairs can be really limiting, sometimes impossible. Avoiding showers can be emotionally crushing on top of everything else. I am really sorry.
For me, PEM always feels like forever, and each passing day or week seems a promise that it will be. It can lie.
It is not fair. It may also pass. It can certainly improve.
I am so sorry you are hurting. I wish you strength and resilience in abundance. I wish you better things.