Two Steps Back

by Claire

So I wrote a blog post late in August about how wonderfully it was all going, and how my life was improving. That very day I had a crash – I collapsed on the floor of the kitchen and couldn’t get up for half an hour. Yet I brushed it off as being due to poor management.  A week later found me collapsed on the floor of the doctor’s office completely immobile after driving myself there – a 20 minute car trip which ordinarily I could have done with no problems. I was so incapacitated that there was no way I could recover enough to stand unassisted let alone drive myself back home so my personal KISA/chauffer Guy was called to the rescue. He drove me home and tucked me into bed and I resigned myself to spending the next day or so in ‘aggressive rest’ mode until I returned to my normal capacity.
It never really happened. I would spend a day or so in bed, and then finally wake up feeling great and head to the beach with Nelson, only to come back home and go straight back to bed feeling weak and dizzy. Sometimes my management was a little better and I would avoid the activities that were the obvious enormous energy drains (walking the dog, cleaning the bathroom, gardening) but would spend a few days in carefully measured energy restriction, but this only seemed to delay the Post Exertional Malaise – instead of crashing down on me as an immediate consequence it would creep up on me and I would start feeling achy and brain foggy without knowing why.
Finally there was no more denying it – the level of functioning that I was so happy about in Progress Report was no more, I would have to accept that my condition was worse.

What Happened?

I had a heap of blood tests done and one doctor even sent me to get an MRI thinking that it might be MS. Thankfully it wasn’t MS but unhelpfully they didn’t find anything else either. There were no signs of an underlying infection, no angry antibodies, no vitamin deficiencies, no detectable indication of what might be causing this regression. This is typical of Chronic Fatigue Syndrome – one of the worst aspects of this disease is that there are no biomarkers that show what is happening (or not happening) in the body of someone with CFS.

The Push/Crash Cycle

The Push/Crash cycle is common in every ailment where there is a component of recovery. For those of you who don’t know what it is, imagine that you have torn a muscle in your dominant arm that prevents you from doing anything. After surgery and a few weeks of not moving that arm the swelling has gone down and it feels pretty good. The physio has forbade you to lift anything, but the dishes need doing and you feel OK, and while you’ve got the cloth in your hand you may as well wipe down the stovetop. Of course all this activity causes the muscle to become enflamed and now you are facing another two weeks of absolute rest.
pushcrash1 The Push/Crash cycle is so easy to slip into because you feel OK. You feel capable and recovered and you also really really really want to do stuff because you haven’t done anything in so long. The Push/Crash cycle can be immediate – after doing something big like cleaning the bathroom I often need to spend the next day in bed. It can also build up over time – often if I’ve had a week of doing just a little too much every day I won’t feel any ill-effects until boom; in bed for three days.
I think that the air filter did help me, and that my condition improved but I got carried away and had a month or more of doing a little too much, and then crashed. And instead of allowing myself to recover properly I went into denial and tried to maintain my heightened activity levels, pushing myself further and further into the red.

Back to Basics

Since accepting that my fatigue is worse I have stopped trying to hold on to the level of activity I was so happy with. Letting go of the gains was heartbreaking but at least I’m moving out of the push/crash cycle. In the last month I have re-established my base level and am focussing once again on the activities that I can do Every Day. I am slowly incorporating a walk around the block and washing the dishes in the evening into this routine and I hope that I will eventually be back at the level of activity in Progress Report.