Wired but Tired! with ME/CFS
by Michelle Green - June 2023
Once at an online support group we discussed a symptom ‘tired but wired’ or having a ‘hyper’ feeling of energy. It was so comforting to hear others experienced the same as me - with so many other symptoms, and this being more common in a recovery phase, it feels like something that often falls through the cracks regarding knowledge around it. However, as I’m starting to share notes with others who also have ME/CFS, I’m coming to learn that it is experienced by quite a few.
My insomnia returned, because I stopped doing my ‘sleep hygiene’ as I felt too hyper to sleep, so instead I would do chores around the house at midnight, when I should have been asleep. It feels like my personality changes a bit when I’m around people, like I’m ‘Michelle’ on some ‘Speed’ drug. It's as if I've suddenly developed the hyper version of ADHD. I even took an online survey to check if I did have ADHD, but no, what I was experiencing was something else. When I'm wired it’s hard for me to sit still, and my mind flits fast from one thing to the next. Concentrating on a single task is difficult if it’s cognitive, and for a while it was nearly impossible to work. But physical tasks are easy, yes easy with ME! … well within my envelope of energy, until I run out. In this hyper state I interrupt others, because thoughts are coming so fast into my head and it feels overwhelming to not let them out. I can become loud and excitable - great for me, I'm having a blast. I feel like I have a lot of my brain and energy back, after months of just existing to eat, rest and sleep, so it’s quite euphoric to feel otherwise. But it is very difficult for those close to me, and that became really challenging when I tried to suppress it.
I have noticed that it happens to me when I'm recovering and beginning to get energy back and the brain fog has lifted. However if I've done too much and become overstimulated, my nervous system becomes stuck 'on'. What they call the “‘fight or flight’ response is an automatic physiological reaction to an event that is perceived as stressful or frightening. The perception of threat activates the sympathetic nervous system and triggers an acute stress response that prepares the body to fight or flee.” (Psychology Tools, 2023). But I find this definition misleading regarding ME/CFS. You could be just enjoying seeing your friends again, or finally being able to do that spring clean, so it can be happy things too, not just stress, that can overstimulate your nervous system.
This seems to be a common experience, when a person with ME/CFS goes into recovery mode, and is a tricky one to handle. You can so easily blow it and regress again by doing too much during this time, because it is easy to end up running on adrenaline and not true energy, and there is only so long the body can do that before we experience a fatigue low. When it happened to me last year I had no idea what was happening, and the illness regressed again by my overdoing it. However now I seem to be managing to stop this boom-bust cycle by meditating lying down at least twice a day - ideally 4 times a day (for me 20 to 30 min each time). And this is important: no matter how I feel, I need to do this! By doing this, I don’t regress my symptoms from being ‘wired’, and eventually my body recalibrates to a more ‘normal’ state.
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The experience of being 'tired but wired' in the context of ME/CFS is intriguing, especially as it speaks to the complexities of recovery. The mention of 'Lucky Spins' highlights how moments of perceived energy can, paradoxically, lead to setbacks. Balancing this euphoric state with the need for rest is crucial, yet challenging, demanding constant mindfulness of one's limits. Understanding this cycle is essential for effective management.
It's interesting to read about the complexities of experiencing a 'hyper' state during recovery from ME/CFS. The emotional rollercoaster, combined with physical tasks seeming easier, raises questions about the interplay between energy and sensation. However, the notion that one can simply push through this phase often leads to a deeper regression, reinforcing the need to address the perceived “ Woo ” of sudden energy surges in a more informed manner. Understanding this phenomenon requires more nuanced discussions.
Your insights on the “tired but wired” sensation are compelling and reflect a deeper understanding of the complexities faced by those with ME/CFS. The acknowledgment of the "Lucky Ones" who experience a brief return of energy during recovery phases highlights an often-overlooked aspect of this condition. It raises questions about managing energy effectively, especially when joy and overstimulation are intertwined. Balancing excitement without overexertion seems crucial for long-term stability.