The push/crash part of chronic fatigue syndrome is well known to people with ME/CFS. Exert yourself too hard physically and/or mentally and you ‘crash’ – your normal symptoms flare up, sometimes new and exciting ones show up and you’re hurting. In scientific terms a crash is called post-exertional malaise (PEM) and unless you’re managing your ME/CFS really well you’re going to have to deal with it…. sometimes frequently. I wanted to explain what it feels like when I crash so people can gain a better understanding of the struggles faced by ME sufferers like myself and maybe help someone they love along the way.
For me a crash feels like I’m falling out of control. I imagine I’m falling down a deep, dark hole (like a dry well) My instinct is to fight it, to put my hands out trying to grab onto the walls but this only causes more injury and makes things worse. The more I fight when I’m crashing the longer and more severe the crash becomes. I feel anxious because I know what’s coming. My mind races trying to find a way to avoid the pain and exhaustion, that by now is inevitable. Added to this I also feel somehow that I have caused this to happen. I feel it’s my fault for overexerting myself, but the truth is I didn’t do anything wrong and it’s not my fault I am ill.
So instead of fighting, I have to trust that if I allow myself to fall, I will eventually hit the bottom and I have to trust that the impact won’t be too hard. The scariest and most frustrating thing about a crash is I don’t know how long it’s going to last but I have to trust that, if I rest, then eventually I will start to feel better.
So I’m at the bottom of the well, injured but without any means of escape. All I can do is rest and wait, knowing that if I rest, in time a ladder will appear. This could take days, weeks or even months but when it appears I can slowly begin to drag myself to safety. I find this resting period very hard. My brain is still just as overactive and my anxiety and depression take over. I slowly climb the ladder one rung at a time. I may stumble a few times and slip down a couple of rungs but I know if I keep going I will eventually reach safety.
When I crash I feel weak, heavy, exhausted and pathetic. It feels like someone has removed all my blood and replaced it with lead. It feels like gravity is playing tricks with me. Everything hurts, it even hurts to think. I’m hypersensitive to everything including noise, light, smells and touch so I spend my days in a darkened room. My tinnitus gets worse and screams at me. My senses are heightened, yet I feel disconnected from reality. I’m not saying any of this to get sympathy but when you have a chronic and isolating condition like ME/CFS you feel like you don’t have a voice, so today I’m giving myself a voice.
This ‘crash’ after overexertion makes me very wary of doing new things. It actually makes me scared to do anything just in case it causes a crash. I avoided any activity and interaction with others for a long time due to this fear but it only made my mental health worse. The experts say you have to pace yourself to try to avoid crashing but I personally find this very hard to do. I will talk more about pacing in a future post.
The more times I crash and recover the more equipped I feel to deal with the psychological side of my illness. The best advice I can give to someone going through a similar experience is; rest and be kind to yourself. You haven’t done anything wrong to cause the crash, it’s not your fault you have ME/CFS. Trust that by resting you are doing what’s best for you body at that moment. I know it can be very isolating but please don’t be afraid to ask for help. By just surviving you have proved how strong you are. Take care.
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