Rolling crash

Lately I’ve been struggling more with my M.E. I feel like I have Post-Exertion Malaise, PEM, All The Time. PEM is an exacerbation in my M.E symptoms with some additional symptoms. My energy levels are just so low, my pain levels are higher and I have different types of pain. I’m also more hypersensitive especially to light, noise and touch and sometimes smells as well. My brain fog is bad and it’s been affecting my speech and sometimes just thinking to type out a text is an effort. These are just some of the things that I’m experiencing when I’m feeling crashed with PEM.

PEM can come of even after small exertions. Just doing my morning routine with my PA brings PEM on a few hours later. My PA’s do a lot for me to help ease my energy levels but I’m still exhausted. I wake up tired. Sometimes I just don’t feel up to having a bath so I’ll have a wash in bed instead.

By about 2/3pm I’m crashed. I just lay in bed in pain with no energy. There’s been evenings when I’ve cried exhausting myself further but I cry because of the amount of pain I’m in and how bad my body feels and how sick and tired I am of feeling sick and tired. I just feel hopeless of this cycle I’m in.

I reached out to a Severe M.E group I’m in on Facebook and someone suggested I’m in a rolling crash. I’d not heard of this before so I looked it up and basically it’s me not allowing myself to recover from PEM before I exert myself again and experience more PEM. This totally made sense to me as I don’t ever feel like I’ve recovered and I feel like I’m constantly fighting PEM. I just don’t know how to get out of this cycle.

I’m also struggling to do things I enjoy because I’m with my PA and after they leave I rest in bed, I have lunch which they leave in the fridge for me and then I’m generally needing to do something low-level and then very soon the PEM hits me. I’m so behind on pen pal mail, thankfully my pen pals are all understanding on slow replies. I miss colouring and I’m usually more prepared with posts for things Disability Pride Month and I haven’t prepared anything yet. All my energy is just going on getting ready in the morning. I’m also a person to not be authentic on social media so I’m not showing this struggle online because I don’t want or need to apart from letting people know why I’m so absent at the moment. I hide behind old photos I post.

This rolling crash is also really affecting my mental health when I’m struggling with my mental health as it is. I’m trying to see to both my physical and my mental health and wellbeing. Like today I went for a very short Batec ride up and down my street with my PA. I was feeling tired but I haven’t least the house in a while and getting out on my Batec really helps my mental health but it exacerbates my PEM later in the day.

I just don’t know what to do to get out of this cycle.