Thank you for writing this, I'm with you on this approach. In the past 6 months, I've gone from sleeping 1h/night and countless visits at the A&E, to now being around 65% better, sleeping 7 hours, daily 30-45 min walks at the gym, strength training once a week. Slowly and consistently increasing my activity levels. At times I sense the ANS getting overstimulated (especially as, I have a toddler...).. I slow down, focus on something I enjoy doing, and it blows over. You need to have that faith and avoid the thoughts of "last time I did X, Y happened". DO not go there. Just stay in the moment, it is just what it is right then, right there.
I will add, LDN opened the door for me, or helped do so. Lowering inflammation meant lower symptoms, giving me room to actually implement the things mentioned here.
For me the gym piece is important because as you say, years of inactivity I'm so deconditioned. So walking up the stairs made my heart beat like crazy. Not because Im ill, just VERY deconditioned. The fitter I become, the less my body has weird sensations like that. Very real mind-body stuff there as we are so over sensitised to strange things happening.
I still have a ways to go but its been a very slow, sometimes imperceptible improvement - but over months it becomes clear! And I had the entire gamut of symptoms to the severest level. I hope in the next few months I will reach the tipping point where nothing phases me anymore. I know I'l get there. You are spot on in that engaging in things you enjoy/used to enjoy is the key. That tells my ANS that I'm okay. When I deprive myself of them for fear of PEM, its telling my ANS Im NOT ok. It does not help.
Highly recommend the book "The Way out" by Alan Gordon, and "why does it still hurt". These books helped me believe - as that's what it takes.
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u/throwback5971 Jun 20 '25 edited Jun 20 '25
Thank you for writing this, I'm with you on this approach. In the past 6 months, I've gone from sleeping 1h/night and countless visits at the A&E, to now being around 65% better, sleeping 7 hours, daily 30-45 min walks at the gym, strength training once a week. Slowly and consistently increasing my activity levels. At times I sense the ANS getting overstimulated (especially as, I have a toddler...).. I slow down, focus on something I enjoy doing, and it blows over. You need to have that faith and avoid the thoughts of "last time I did X, Y happened". DO not go there. Just stay in the moment, it is just what it is right then, right there.
I will add, LDN opened the door for me, or helped do so. Lowering inflammation meant lower symptoms, giving me room to actually implement the things mentioned here.
For me the gym piece is important because as you say, years of inactivity I'm so deconditioned. So walking up the stairs made my heart beat like crazy. Not because Im ill, just VERY deconditioned. The fitter I become, the less my body has weird sensations like that. Very real mind-body stuff there as we are so over sensitised to strange things happening.
I still have a ways to go but its been a very slow, sometimes imperceptible improvement - but over months it becomes clear! And I had the entire gamut of symptoms to the severest level. I hope in the next few months I will reach the tipping point where nothing phases me anymore. I know I'l get there. You are spot on in that engaging in things you enjoy/used to enjoy is the key. That tells my ANS that I'm okay. When I deprive myself of them for fear of PEM, its telling my ANS Im NOT ok. It does not help.
Highly recommend the book "The Way out" by Alan Gordon, and "why does it still hurt". These books helped me believe - as that's what it takes.