Thursday, 13 November 2025

M.E. and crashing

A ‘crash’ is what we call it with M.E. when our symptoms worsen and become difficult to manage. A crash might last a day or two, a week, a few weeks or even longer. Crashes often go along with Post Exertion Malaise, PEM for short. Crashes are caused by me over exerting myself. It could be from going to my Dad’s for a couple of hours, going to my GP practice for my ECG, or just not pacing myself enough during the day.

My symptoms are really unpredictable; that’s one of that hardest things I find about M.E. I can sometimes wake up feeling crashed or other times I can be having one of my relatively ‘normal’ day and then very quickly I’m feeling totally crashed. This is especially why my evening care with my care agency or my PA is so needed.

Bad day = PJ day
When I’m feeling crashed I struggle to manage my symptoms as they are much worse. Some things that trigger me to crash are: exerting myself beyond my limit - this could be doing an activity at home that over exerts me or leaving the house, having a non-epileptic seizure again is a another trigger as that over exerts my body physically, not sleeping well, high levels of pain, an exacerbation in my M.E. symptoms, stress and anxiety, physical exertion that is beyond my limit including being sat upright for too long - orthostatic intolerance, being ‘normal person unwell’ for example having a cold or an infection - I have a low immune system because of my M.E.

My recent crash was triggered by going to my Dad’s for a couple of hours. I got home and was beyond exhausted; much more fatigued than usual. My crash continued into the next day. I thankfully slept well which helps. The following day I didn’t rest enough, I’d paced myself doing low-level activities but I didn’t have any rest periods. By mid afternoon I was in bed feeling completely crashed. I just laid in bed with my headphones on listening to soundscapes resting or listening to podcasts on a low volume due to hypersensitivity to the noise. My blind was also closed and the lighting in my room was dimmed due to my hypersensitivity to the light. My pain levels were high, especially in my legs and the muscles in my legs were in spasm. Times like this are when I’m grateful to have a profiling bed; I was able to lay my head down and raise my legs to get comfortable more easily and independently. I was also grateful for my airflow mattress with the memory foam over the airflow tubes. I find this mattress much more comfortable and less painful. I found my previous mattress where I laid on top of the moving airflow tubes painful and uncomfortable due to my hypersensitivity and leg pain. I just laid listening and rested waiting for my evening carer to arrive.

When my carer arrived I asked her to let herself in using my key safe as I was unable to get out of bed. I needed conversation to be at a lower volume and kept to a minimum as conversation is something I always find tiring even on a good day and the noise I find physically painful if it’s too loud. I felt up to having my usual wash in bed - on worse days I can’t tolerate this and I just get into my pyjamas. I have to be touched very lightly because of the hypersensivity and pain in my body. With my M.E. I find that when I’m struggling my legs get very painful and just ‘hurt’ but it’s a pain that I find hard to describe other than just this deep hurting pain. I need more help from my carer to get dressed and undressed. I find if I’m finding it hard to move my adapted pyjamas are easier for my carers to dress me into because of how they can be unfastened with the poppers on them. I have barrier creams put on me by my carers to help prevent pressure sores which I’ve had in the past and my mattress reduces my risk too. I also have a pressure relief cushion on my wheelchair and I have another cushion on my desk chair for when I sit there. I ask my carer to help get me in a more comfortable position in bed. I have a body pillow on my bed which I find helps as it can hold me in a more supportive and comfortable position. I rest and recover while my carer is in the kitchen. I have my bedroom door closed to reduce the noise and the subsequent pain. I need to eat something that will be easier for me. I had planned on salad but that would be too difficult for me to to eat so I opted instead for jacket potato and beans which can be cut up small and mashed up. I eat with adapted cutlery that has a chunkier handle for me that I find easier to hold, the only downside is that it’s heavier some sometimes I struggle. On occasions at my worst I’ll ask my carer or PA to help feed me. I’ll only do this if it’s really needed as it’s so hard emotionally to have someone help me eat. I have an over bed table which my carer will move towards me so I can eat and have my drinks closer to me. I’ll drink my coffee out of a lightweight lidded cup. I love my colour changing Starbucks cup for when I need a cup like this. I always have straws with my drinks too. My carer will refresh my Giraffe bottle so I’m able to sip on water for the evening. The bottle holder is attached to my bed and it has a long gooseneck straw that I can position in front of me so I can drink hands free only moving my head a little. I can even drink while laid down. It just makes it so much easier for me and gives me the independence to have a drink when I want when I’m unable to lift my drinks bottle. Before my carer leaves they’ll close the blinds in the front room and make sure I’m settled in bed and I have a bottle of juice for the morning, water for my pain relief medication and my wheelchair is next to my bed along with anything else I might need. They’ll then lock up and put my keys back in the key safe.

Giraffe straw for me to drink
For the rest of the evening I just rest. I can’t tolerate watching something (I don’t watch much television or YouTube anyway as I find it quite sensory overwhelming). Thankfully I can tolerate listening to something to entertain me. I like to listen to audiobooks and I like a verity of podcasts. I listen on a low volume so it’s more restful and tolerable. Sometimes I can read my Kindle for a little bit too. I put it on my Flexzi stand and I attach my page turner remote so I can read laid down. I make the font bigger which makes it easier to be able to read. I like reading as it’s a quiet low-energy activity an I find my Kindle makes reading more accessible. There aren’t many activities I can do when I’m feeling crashed because of just how tired I feel as well as the malaise and hypersensitivity as well as the brain fog which makes concentration difficult. I just hope that I’ll be able to get an early night.


When I’m crashed:

  • It takes more effort and more energy from me when trying to do tasks.
  • The fatigue is overwhelming it’s hard to put into words just how intense the fatigue is and even with rest it does nothing to restore my energy levels.
  • Make my hypersensitivity worse. My bedroom lighting is dimmed and I need more quiet. I talk quietly and I need people around me to talk quietly. I struggle to watch things like TV programs or YouTube so usually I don’t watch anything at all as it’s sensory overload for me. I can usually listen to something for entertainment like audiobooks or podcasts. I also like to lay and listen to soundscapes. I also read my Kindle. At my worst I just lay in the quiet, thankfully I have a good imagination. I’m more hypersensitive to touch and strong smells as well.
  • My pain levels are worse and I’m more hypersensitive to pain. I especially get pain in my legs. I get muscle pain and achyness as well as other types of pain. My muscles are a lot weaker too.
  • My body just feels so heavy too, like I’m being weighed down.
  • My mobility is worse and I rely upon my wheelchair to get around, at times I’m unable to get out of bed. I also need more help with my mobility like getting my carer/PA to lift my legs onto my bed or to transfer into my wheelchair.
  • I find talking more tiring than usual. Conversation has to be kept to a minimum and at a lower volume. I find noise physically painful. Sometimes I use communication aids like my communication cards that have basic phrases on them like: yes, no, I need a drink etc. I also use basic SSE - Sign Supported English which uses BSL signs.
  • I get cold more easily especially when I’m tired.
  • My immune system flares up and I get flu-like symptoms without having a viral infection.
  • My brain fog is worse. I’m more forgetful, lose track of the day, get more confused etc. My speech is also affected. I forget words and I struggle to put sentences together. The fatigue doesn’t help.
  • My headaches and migraines also worsen.
  • Despite the extreme fatigue I can experience sleep problems. I find this really difficult as if I don’t get the sleep I need my M.E. is worse the following day, which is especially not great when I’m crashed.

All I can do when I’m in a crash is rest as much as possible to allow my mind and body to recover and just wait until I’m back to my baseline. Some of these crash symptoms are still there as my ‘normal’ they’re just maximised during a crash. Even at baseline with Severe M.E. life is still a challenge and I still very much need my carers and PA’s for most things but by pacing myself I am able to do a little more in terms of activities and I’m able to do a little more myself. I still experience payback and PEM but that’s just the nature of M.E. and something I find people don’t always understand a.k.a the consequences of doing activities like why I request telephone or community medical appointments instead of face-to-face at the GP practice or hospital because the latter will leave me crashed. I need to try and avoid crashing as much as possible. Sometimes this isn’t always possible but whenever I can I try to minimise the risk of me crashing. At times there are things that I do that are worth crashing for because I can’t live in a bubble and it’s nice to do enjoyable things.

I have quite a few things that give me some independence, even when I’m crashed. For example I have my Giraffe Bottle, a hands free water bottle so that even when I’m unable to lift a bottle I can still drink and stay hydrated. I also have all of my smart tech in my home too so I can control the lights, my bedroom blind, my fan and the heating all on my own either with my voice or on my phone. I also have my profiling bed so I can reposition myself like sit up to eat or drink, recline to rest and raise my legs to get more comfortable on my own and I find my body pillow also helps to make me be feel comfortable and supported in bed too. I also have a Ring doorbell so when my carers, PA’s, nurses, the urgent care team etc. arrive I can ask them to use the key safe to let themselves in, or I can let them them know that I’m on the way to the door. I also feel safer with my Ring doorbell too. I also have my CareLink that I can press should I need any urgent help, the button I wear on my wrist will also alert CareLink if I have a fall too.


Resources and products:

Books

  • A great book I’d recommend to anyone is ‘Severe ME: A Guide to Living by Emily Collingridge - Buy here
  • For more general guidance I can recommend Pippa Stacy’s two books:

‘How To Do Life With A Chronic Illness’ and ‘Pave Your Way With Chronic Illness’ - both books go hand-in-hand with each other so the links to both books are both from the same bookstore.

Products

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