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’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.

What I’m loving lately - July 2026

1. Understanding pen pals

The past few months with my health being worse and really struggling with my M.E especially I’m finding getting round to doing enjoyable activities like pen palling really hard as my energy levels are so low. Thankfully I have really understanding pen pals who get that I can be slow to reply but know that I always will reply when I’m able to. They also understand that sometimes a postcard is all I’m able to reply with when other times I can send a long ramblings letter. Some pen pals have also given me their mobile number so I can keep in touch with them on WhatsApp wherever in the world they live.

2. Cards2Warriors mail

Cards on peg fairy lights

Cards2Warriors is an amazing organisation. It’s part of the Chronic Warrior Collective which is a really positive chronic illness community. People volunteer at C2W to send mail to people with chronic illnesses, caregivers or medical professionals who are having difficult time. I’m on the long-term support list at C2W. Recently I’ve received some really lovely mail from C2W volunteers. Reading their words of support and just hearing about their lives just really brightens my day especially when mail arrives on a bad day. It’s especially helped as my health got worse end of last year; I’ve settled into this ‘new normal’ but it’s still really tough some days. The kindness of a stranger sending me a card just really means a lot. It reminds me that I’m not alone and that people are thinking of me and want to take the time to make me a card or choose a card I’d like, write in it and send it to me. C2W the organisation also sent me a card too (the bunny one in the photo).

In my bedroom I have string of fairy lights with mini pegs and I peg cards up, a lot of card have come from C2W. Spending so much time in bed it’s great to look at my mail and be reminded of what people have sent me and the support from that mail from C2W or pen pals. I’ve actually filled up my fairy lights so I’m going to redecorate when I’m feeling up to it to make room for future mail.

3. Books

I’ve just finished a great audiobook called ‘The Good Samaritan’ by John Marrs. It’s been turned into a drama on ITV so I might have to watch that. My current reading book on my kindle is ‘Out Of Sight’ by A L Fraine. It’s the ninth book in the series and this one is set near to my local area. Me and my Dad both love the Detective Loxley series so we was excited for this ninth book to come out. I’m three quarters of the way through it so excited to see how it ends.

4. Secretly I’m loving reality TV

I goy Disney+ as a treat to watch some different things and I watched some dramas like 9-1-1 Nashville and some docuseries but then I watched a reality TV program called Villa Vanderpump and got into it and watched all 3 seasons and kept getting annoyed at some of the cast members who I disliked. I’m now rewatching Secret Lives Of Mormon Wives as I started to watch it a while ago but there’s 4 seasons now and I’m getting into it and I’m on S2 currently.

5. My care team

I’m loving my care team. My PA’s are amazing and I feel so grateful to have such wonderful PA’s who go and above for me and who I get along with so well and who support and help me out so much. I’m also got a new social worker who when I met her she was great and really understanding of my individual needs and is helping put things in place to improve my care when I’m in hospital and also my situation with agency care.

6. Colouring

I’m really into colouring at the moment. I’m particularly loving a brand called Calm Over Chaos. I have most of their pen collections, I particularly love my new alcohol markers and I’ve just got their colouring binder and signed up to their ‘Colouring Quest’ which is 10 colouring pages for my binder every other month. I love my new 150 Crayola pens too. I’m enjoying colouring as it’s low-energy, a great distraction, you feel a sense of achievement when you finish a page and it’s nice and creative. My friend Laura also got me a set of colour in postcards which I love as I’ll enjoy colouring and they’ll be perfect for pen palling. I love colouring while listening to my audiobook or a podcast.