I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Tuesday, 6 September 2011

Post-Exertional Neuroimmune Exhaustion

Along with the new definition of ME, there was a change in what we used to call Post-Extertion-Malaise. Now, having more understanding of what it actually is, the experts are calling it Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e).  In my non-professional opinion, this is a far more descriptive term for what I've been feeling these last days, and I welcome the change; terminology really does affect how we sense things - hence the science of semiotics.

The new name, being more specific, has indeed changed my perception of the effects of exertion on my body. Last week's Exercise ECG has had me flat out since Thursday (that makes 5 days now, and counting) to the point that I haven't even posted anything here, and have severely limited all the other activities that usually make me feel better. My experience of this crash has been different, because I've been able to really hone in on what I'm feeling, and most of it is indeed related to my neurological and immune symptoms, and that is where the malaise and fatigue are coming from.

Synchronicity being what it is, I had been thinking about this post when I logged into the But You Don't Look Sick forums, and saw a post in which MairiD'Anaxemurderer (gotta love the moniker) described what fatigue feels like (quoted with permission):

You know when there has been an oil spill and you see footage birds being treated to remove oil? Fatigue is like crude oil.

It looks like a liquid, and theoretically shouldn't stop me lifting my arms - physically it doesn't actually stop me but it feels thick and heavy and gloopy, and that doing so will take more energy than I have. It burns - it feels acidic and toxic on my muscles, like they are choking with contamination. It feels dark, like some sort of liquid black hole, sucking away at my energy. It is rich in energy, because it's eaten all mine - if I could just find a way to burn it as a fuel I would be unstoppable. But it's stuck all my feathers together, and it's in my digestive system, stopping the energy from all the nutritious things I eat getting where I need it. It makes me stuck to my bed or sofa when I want to be flying.

It feels like I'm only one step away from getting the oil cleaned off - a sleep and I'll feel normal, a bath, a sauna, some sugar and caffeine, a skate, a long dog walk, a meal - whatever it is I keep feeling it is the answer, but the oil is always still there afterwards, often more so because I've been wading through that thick, sticky oil to get it.

I'm not going to stop wading through it - I've got an amazing life on the other side of that crude spill, but if I could just borrow a conservation worker for a bit and get that nasty gunk hosed off me I would be much obliged:)   

She nailed it

But that's only the fatigue part. Now add the neurological and immune symptoms, and you've got me right now. Thinking is troublesome, making decisions is impossible, and any task involving congition is beyond me. I can't remember anything from one moment to the next. I forget to drink my tea. Sometimes I even leave it in the kitchen, forgetting to take it to the couch with me. Finding words is painful - it's like there's a block between and the place in my brain where that information is held. All sensory input is heightened - my skin is crawling, the slightest noise grates away at my nerves (I'm actually wearing earplugs as I type because of the gardeners and construction in my neighbourhood), and light is blinding. When my son jumps on the couch, my stomach lurches, and when he then jiggles his foot, my head spins. Never mind what happens when he innocently wants to cuddle or play with my ears.

My muscles are all twitchy (there have been twitches in the oddest places), and I feel so unsteady on my feet, that I've always got a hand out for balance even though I've never fainted or actually fallen over. I feel like there's a cold brewing, which there well could be, because my son has one, but it's a low-level achiness and scratchy throat that won't go away. As for sleep.... at first I was happy that I was getting sleepy earlier in the evening, but sleep didn't come any easier - in fact, it is more elusive than ever. Now I'm not getting sleepy at all. My circadian rhythms are reversed again, I've been waking several times in the night again, and just can't seem to get to that deep sleep stage. I've even upped my sleep aids. 

But the most frustrating thing is that I'm having trouble going back to that lower level of functioning, and pacing myself at that extreme. I have (thankfully) become used to living between 5 and 6 on the functional capacity scale, and now, being back between a 3 and 4, I am having trouble planning and maintaining a lower level of activity. I have to start forcing myself to do less again, and it's really hard. It's rather depressing, actually, and it's only been 5 days. Perhaps what I need to do is follow my own advice, given all too freely to anyone who will listen, and get some perspective.

It took me several months to raise my level from a 3 to a 5. I've been knocked back down. Starting over. I need to be gentle and forgiving of myself. My self-talk needs to shift to this: I did not bring this on and it is not my fault. I may have foreseen a crash, but there was no way to know how bad or how long it would be. I need to go back to the beginning, and start focusing on pacing again, logging again, and give myself the time and patience I would offer anyone else.

Again, with the synchronicity - how perfect that the self-help course part 2 starts next week? I hope it will give me the structure I need to get things going again.

This is just another slump, and I can climb out again. My new mantra: breathe. time. patience. forgive. be as good to yourself as you are to everyone else.


  1. Andy, sorry to hear that this crash is so bad. I've got a cardiologist appointment in a few weeks: I'm wondering if you think it's worth all this jumping thru hoops so the doctors can conclude there is little wrong with us that they can measure? It took me days and days to recover from the tilt table test, and by the sound of it this one was worse for you.

  2. Heather, this one was really bad. I wish I could answer, but until I have my naturopath or family doctor look at the results, I won't know if it was of any use at all. I promise I'll post as soon as that happens!

  3. Life is mostly froth and bubble, two things stand like stone-Kindness in another's trouble, COURAGE in your own.
    ~~~Adam Lindsay Gordon~~~

  4. Courage. I'll add that to my mantra.

  5. Mrs Axemurderer nailed it alright, especially the bit about always feeling like recovery is within reach. I suppose that's better than the alternative.

    This kind of chronic condition neither progresses nor heals in a nice steady linear fashion. It's a sawtooth. The trend over months (and, if it comes to that, years) is your guide, not how you feel this week compared with last week. One lesson from that is: never panic because you can't do something you could do yesterday.

    Your natural tendency towards organisation should see you develop a box of epxectations for each level of function that you experience, and each morning (I use that word loosely) you select the box that matches your capacity that day.

  6. Thanks, Mike, I needed that reminder to look at the big picture in terms of recovery times. The sawtooth is frustrating. I hope the mindfulness sessions will only add to the now-ness of my attitude, and maybe help me let go of those expectations and comparisons. Thanks!!!!