First off, I must apologise for not writing yesterday. Yesterday was a bad day; in the morning I lay in bed unable to get up wondering whether this was it, was this the moment I became bed bound. It wasn’t though, I rose after a few hours. I was, however, unable to write.
Was this the danger zone? The moment where I feared being unable to get out of bed? I don’t think so. The danger zone is far more benign looking than that. It is so sweet and innocent and relief bringing that it is so very, very easy to forget that it is the danger zone.
The real danger zone, the one where you need MI5 and MI6 to watch out carefully for all signs of potential attack, is a good day. All over the M.E. world I suspect carers and patients are firmly nodding their heads in recognition of this. Those who have never spent time with someone with M.E. may on the other hand crinkle up their forehead in confusion. Why would a day where you feel good be dangerous? Why would it not be a day you luxuriate in? Well yes, we do luxuriate in them but they also scare us.
Post exertional malaise or post exertion relapse (or indeed any of it’s other names) is the spectre that haunts us on good days. Somebody recently described themselves as an energiser bunny on a good day. All they want to do is buzz around the place doing everything they can’t do on a bad day. Cleaning the house and having a shower seem to be close to the top of the list! (Who would have thought that M.E. makes you dream about cleaning the house!). Meeting friends for a drink and staying up late are also high on the list.
Post exertional malaise (PEM) is something everyone has partly experienced. We’ve all been on a wonderful long walk and woken up the next day unable to move. Your muscles have built up too much lactic acid (I believe!) which causes you pain.
The problem if you have M.E is that you build up at least three times more lactic acid than the average person. Plus your anaerobic and aerobic thresholds are significantly lower than a healthy person. As a consequence, it can take very little exertion for a patient to suffer from PEM. For some, it can be as little as sitting in a chair by their bed for 5 minutes. For me, it is any form of mental activity or as simple as sitting doing a jigsaw puzzle for too long.
The PEM twist is of course that it doesn’t just lead to aching muscles but also brain fog (the days where we seem crazy or stupid!), intense fatigue, heart palpitations and for some emotional fragility (I suspect due to just feeling pants!). So the price you pay for stepping into the danger zone can be very high. For some PEM can last for a few days, for some weeks.
On a bad day, it is easy to not do too much – we feel so pants that we can’t really over do it. On a good day it is so easy! Every morning I must plan my day to ensure I don’t do too much. I can’t just hop out of bed and see what happens.
My life is based around activity points (imagine a Weight Watchers system). I’m no expert at pacing and I have had no specialist advise on what to do. This is a cobbled together plan by reading lots and getting advice from my mum and husband. It constantly is adapted as I try and create a pacing system that works for me.
I’m allowed 12 points a day. So on a good day what can I do: shower – 2 pts, 3 x 5 min walks – 4.5 pts, make lunch – 1 pt, write my blog – 2 pts, stretches – 2 pts. Total – 11.5 pts – I try and leave a little behind for unexpected activities (e.g. a telephone call). Look again at my day – how much do I achieve? Do you see any socialising? Do you see any hobbies other than my blog? If I want to do these things, something must go.
I want to meet friends for a drink in the evening for 40 mins in a pub 5 mins walk from my house. How do I do it? Don’t walk during day – saves 4.5 pts, don’t shower (fun when you are going out with friends) – saves 2 pts, don’t do stretches – saves 2 pts. I must eat lunch though and I enjoy writing my blog so that means I keep 3 pts.
So I have spent 3 pts out of my allocated 12, leaving 9 points. Walking to and from the pub will take 3 pts, leaving 6. A pub is a noisy place: lots of talking and music. A pub is also a busy place: lots of colours and people and different activities going on. Plus of course all the socialising with my friends. So my 6 points isn’t enough for 40 minutes. This is an 8 point activity. So I have to go into activity debt. Tomorrow I will have only 10 activity points to withdraw from. As it is, using those 2 extra points may be enough to result in PEM.
So on a good day we try and work out how to enjoy ourselves, get on with life but not do too much so that we end up in the danger zone and consequently experience PEM. We can never fully relax and forget about our M.E. no matter how good we feel.
So when you see us out and about – it is a good day but in our brain we are trying to balance whether it is worth it to spend that extra 2 mins to walk to our favourite shop or whether the enjoyment that brings will not be worth entering the danger zone for.
Despite all of this, a good day brings me a real sense of relief and plants a seed of hope that this is the beginning of recovery. So while recognising it is the danger zone, I can still enjoy it.