One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms from day 1 plus the symptoms I would expect from day 3’s activity. If I quantify these with some arbitrary units I can illustrate it: if I did 4 of activity on monday, so had 4 symptom severity, and on Wednesday I did 4 of activity again, Wednesday’s symptom severity should be somewhere around 8. Most of the time this means I keep activity low and consistent enough that 2x is bearable, or I plan my weeks to allow a very low activity day 2 days after any higher activity day, so x+y is still manageable. This is called “staying within your energy envelope” and means I can usually keep my levels of energy and symptoms reasonably predictable and avoid a boom-bust cycle of activity and crashes.
… Unless I have to do something out of the ordinary. Then all that careful planning goes out the window.
Life can’t always be conveniently scheduled for 1 achievable activity per day. Like my trip to Akaroa a few weeks ago, or my wedding in 2018, or moving house, sometimes we just need to do something big that puts us outside of our energy envelope. So what happens then?
When people with ME push ourselves outside of our energy envelope, we risk permanent damage to our physical health. My wedding lost me about 10% functionality (as I estimate it today, with out actually looking at the functiomality charts), which still feels like it was an ok trade. On the other hand, my friend went from moderate (can still function on her own, sometimes needing mobility aides) to severe (bed bound most days, always needing mobility aides, and needing assistance with some daily tasks) overnight as a result of deep cleaning her house. We both agree that this was definitely not a fair trade.
So we live our lives, trying to stay within our envelopes, and trying to minimize the damage done by those major events. If we can do this, sometimes we might even improve a little and get some of our life back. If we can’t, our condition may degenerate and never bounce back.
I can tell I’m pushing too hard because I get shakey. If I think I’m overdoing it, I’ll check my hands… shaking? Sit down and rest, drink some electrolyte solution. Not shakey? I should probably do the same, but I don’t. If I push it to shakes or ignore them too often, I get to a point where my body just snaps. This is a bizzare moment. The shakes get big enough that other people notice, my nausea will reach a level where I think I’m actually going to vomit (if I keep going, I will), my head feels like it’s being stabbed, crushed, burned and exploded all at once, it literally hurts even just to think, I will be light and sound sensitive, my throat hurts and I struggle to swallow, and my face starts crying.
This last one is odd – we say it’s my face, but it’s really my body. The pain I’m not feeling, from the inflammation in every nerve, is so intense my body breaks down, sometimes to the point of uncontrollable sobbing. I don’t feel like crying, I don’t know why I’m crying, and I know that crying will make my head and throat hurt more so I fight as best I can.
The first time I experienced this disconnected and visceral pain reaction was eating pecan pie a couple of weeks after having all 4 wisdom teeth removed. It was the best pecan pie I’ve ever tasted. It was bliss. Nothing on earth could have stopped me enjoying that pie… including my body, which sobbed uncontrollably over the pain in my jaw, while I happily munched on nuts and pastry. Omg that pie was good. It happened again after an accident that left me with internal injuries that hurt more than I realised.
My most impressive collapse happen on a 48 hour film shoot – far later than it should have, while I was holding a camera and jib arm over a balcony. More recently I crashed at a band gig as the 3rd encore started and a sat down to rest (I’d done way too much at set up). It took 5 hours to get my system back to a point where I could drive home. Sometimes my body will just start crying when I’m doing housework, or when I try to get out of bed when I’m sick. It tells me I need to rest – at home we can laugh about it “I’m fine, it’s just my face crying”.
It feels a bit like that involuntary scream that is released when riding a rollercoaster. The scream feels like a release. This does not.
With sitting quietly and drinking some electrolyte solution to restore my blood pressure and reset my vagus nerve, I can usually calm my body down enough to get me out of the situation, then I need significant time to rest and recharge, especially if I need to drive home.
As if that collapse and the lingering pain of it wasn’t enough, I still have to contend with the Post Exertional Malaise. Remember the equation? So 36-48 hours later my body will collapse again. Thankfully it’s never the same symptoms, but I won’t be able to walk, I may throw up, I’ll be in intense pain, and it will hurt to think. It could last a day, it could last 3, it might last the rest of my life.
Yesterday my husband and I attended a kind of school reunion thing celebrating 100 years of that educational system. It was a day of festivities at the school, with drinks in the evening and a concert following that.
I decided against taking my wheelchair as most of the festivities would be outside, which would mean I would need my husband to push my chair around, which wouldn’t be fair on him. I knew this was a bad idea, because the school has very limited parking, and limited outdoor seating, and it was going to be a long day… but it also has very few flat surfaces, very few sealed paths, and only 1 elevator (which used to stay locked)*… so it would have seriously limited my access anyway.
We looked at old photos, visited the memorial room, to pay our respects to teachers, classmates, parents and other friends of the school who have died (including our much loved class teacher). We caught up with friends, teachers, and classmates. It was lovely.
I met another woman with ME, and talked about my interest in the rather high number of ex-pupils with the illness, why that might be, and what it might mean. She’s doing pretty well, even working part time, but she knows she’s got to take care not to over do it or she’ll relapse, like I did.
Many selfies were taken. I exchanged numbers with a girl who was my sworn enemy 30 years ago, and joked with my classmate that she should be asking for ID at the bar. Ryan went downstairs for sound check and I bravely asked a twin which one he was. We had a ball.
Then I headed downstairs for the concert. People were sitting on the stairs, blocking access to the habd rails. I’m already a bit unsteady on my feet, so I had to lean on my English teacher’s shoulder for stability. I couldn’t take the crowd and lights in the entryway so I walked around to the side door of the hall and went in that way. I couldn’t find my husband. I found his parents… we called him on his cellphone. He’s back stage, practicing and waiting to go on. I go to find him, heading outside to the stage door … and then it hits… My body was calling time and not accepting any excuses. I needed to rest NOW. I ended up sitting in a corner of the hall, sipping electrolytes, with tears streaming down my face, trying to sooth my body and meditate** for a couple of minutes, while the school orchestra and kapa haka groups performed.
I moved to a spot closer to an outside door (and a power point for my phone), sitting among the students, and managed to meditate long enough to release my throat, stop the feeling of impending vomiting, and dry up the tears. I didn’t have much left in my battery – that was a minimal kind of charge, but I was able to get back stage to my husband, who was nervously preparing to play. I crept back out to my sister and waited to record my beloved’s public debut of a tune he wrote.
Bright lights, excessive noise and other sensory stimulation later, and I’m wearing sunglasses to escape the hall at the end of the show. I can barely walk on my own. It’s hours before I can get the pain in my head to subside enough for sleep.
Sunday afternoon, the day after the night before, I’m aching all over, I still feel sick, my head hurts but not as badly, it’s a little hard to breathe, and I have low level nausea. I was getting annoyed that I have no warning, but really, I had plenty… I was stumbling, I was slurring my speech, everything was too bright and too loud, food tasted funny, I couldn’t concentrate on my own train of thought… I had plenty of warnings, I just wasn’t paying attention.
I’m trying to rest and recover as much as I can today because I know tomorrow is when it will really hit me. I don’t know how badly or for how long. But I do know that I need to take the cat to the vet tomorrow or Tuesday for his blood tests (shit. I didn’t think that through).
I still don’t know if the payback is worth the event 😦 we’ll see how bad it is.
If you have ME, have you experienced a sudden collapse like that?
* the lift was unlocked! I decided to use it because I couldn’t walk up another flight of stairs. Ryan still didn’t want to, but I convinced him. We both felt like we were breaking the rules. Lol.
**meditation is basically a short, concentrated hit of sleep. It’s not enough on it’s own for a full recharge, but as it requires relaxing and shutting down the body and mind, it allows them to rest for a few moments, which can gain a little bit of time before the alarms go off again.