NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone.
My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening and closing cupboards, each one producing that bang sound I just can’t bear. The noise of it is excruciating. My muscles are spasm-ing, as if they’re screaming at me. Every single part of me hurts. My back. My head. My legs.
“What did you do to me? Why didn’t you listen when I told you to stop?” are the kinds of things it feels my muscles would scream, shout, even lecture at me if they had a voice.
I can hardly speak. Last night I couldn’t walk. Had to crawl my way up the stairs to bed, crying as I did so, desperate for this crash to pass a bit quicker than the last one.
Hubby had just got back from work and wanted to know what’s happened this time. Understandable to be worried. What caused the crash this time? But I can’t get the words out. I can’t formulate a sentence. All I want is my bed.
My body has simply switched off. I’m terrified. The power switch is off for I don’t know how long this time. And it happened just like that. Will my legs be working again tomorrow? I don’t know.
What did you do to me? Why didn’t you listen when I told you to stop?If my muscles could speak…
My mind feels as if it isn’t there. I’m a shell of who I was just a few hours ago. A really fragile, weak shell. I’ve got people looking at me, wanting to ask questions, know what they can do to help but I just can’t formulate the answers.
I think back to the last few days, even the last few weeks, and the inevitable lead up to this crash. Holiday to Center Parcs, E unwell, E’s birthday: all activities that have used more spoons that I realistically had available. And then this most recent weekend, spending time with my hubby and daughter. Do I have to give that up now too?
We went to the zoo yesterday. A great trip out especially with the Halloween activities available. However, it was my mobility scooter that had to be my wheels of choice. The scooter that has a very temperamental battery life and can’t really cope with hills.
Certain activities that I wanted to do yesterday with E were not scooter-accessible, so I naively figured I could just park up, and walk the short distance to wherever it was we needed to go. Round the Halloween activity marquee. Up the amphitheatre steps to watch the bird show. Across the grass to get a closer look at the animals. These were all activities I wanted to do with my daughter. I wanted to see her excited face at each of these places and hear her talking about each and every animal she saw.
But my M.E. thought otherwise.
We only spent the morning at the zoo. I knew that would be all I could manage, but obviously I was wrong. Just a few hours-worth of looking, talking, lifting E, was too much.
An M.E. crash is an extreme version of one of the key features of life with M.E. – Post-Exertional Malaise, or PEM for short. It is the feeling of being hit by a truck, dragged along a bumpy road, and then made to run a marathon after the slightest bit of exertion. It is the switch that simply turns off. The switch that controls every part of your body.
The body has run out of energy so badly that it has to prioritise keeping the heart going, simply to keep you alive. Moving is no longer necessary in the logic of M.E. Talking most definitely is not necessary. Therefore, the body appears to turn off the ability to do those things in order to preserve the organs that need what little energy there is.
But the problem with this PEM is that it takes a few hours to kick in. You keep going because you feel like somehow you can. You’re enjoying yourself. In my case, enjoying spending time with my family. Stopping that in order to rest involves having to find somewhere completely silent, with my legs up, and no one talking to me.
So, for people who tell me, you just need to pace yourself a bit better? Well how exactly? I’m already wheelchair bound, I’m already limiting the activities my daughter gets to do purely because I can’t manage them with her. What more can one do?
For those who tell me, but it’s important to push yourself sometimes. Right but this is what happens. My body switches off. That’s the impact of “pushing yourself”. I’ve been “pushing myself” for months now. With a gradual decline in mobility and therefore muscle tone. But what can one do about it? There’s no treatment, no cure. Life with M.E. is life on hold while everything and everyone continues on.
But is this why I’ve been getting gradually worse over the last year? Is it all my fault from trying to continue to do the things that one should enjoy in life, like activities with one’s child? Is this the reason I have a manual wheelchair with the brand name “Karma” written all over it?
We’ll never know the answers to these questions, but for now it’s safe to say an M.E. crash sucks big time. So for anyone struggling to believe M.E. exists, come see an M.E. crash in action. It’s not a pretty sight.
Until next time,
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