I joined a church Lent Group (2 hours at the vicarage one evening a week, permission to lie on the sofa, say nothing, and leave early) and, for the first two weeks, was a bit worried that by doing so I had inadvertently sacrificed being able to do anything else at all for the whole of Lent. Giving up things for Lent may be traditional but it is supposed to be a voluntary decision, not imposed by the unreasonable demands of a tyrannical illness.
I’d reckoned on losing 3 days of my week to the Lent Group – one day of complete rest beforehand, the day itself, and a recovery day. This was clearly unrealistic. The core defining feature of ME is ‘post exertional malaise’ (PEM) – a delayed worsening of symptoms caused by activity/exertion. (Instead of just waking up feeling as if you have ‘flu, the hangover from hell, and have just run a marathon, some kind soul has added in feeling like you’ve been hit by a truck and have done several rounds in the boxing ring.) The main feature of PEM is that the worst effects of it are usually delayed: 24 hours after any unusual activity you feel bad; 48 hours afterwards you feel really bad. Four days then. Or five, six, seven, or more, depending on how thoroughly you have overdone it and a myriad of other factors, some of which remain mysterious.
Chronic illness deprives you of many of the choices that healthy people have. So many things that you cannot choose to do because they are so way beyond your physical limits that there is no question of even of trying. However, in other ways it forces you to make choices every day that no healthy person ever has to face.
Things which are ‘non-activities’ for most people – opening the curtains, taking a shower, getting dressed, cleaning your teeth, eating a meal, sitting up, making a phone call – become activities which severely impact on what else can be done in a day. Choices must be made, everyday activities broken down into segments with rest periods in between; it is impossible to do them all. A visitor or an outing becomes a huge event requiring a strategy of military precision, with a knock-on effect on the days before and after which must be planned accordingly. Other things sacrificed for days in order to manage the one thing I have chosen to do.
A lot of people with chronic illness use Spoon Theory to explain this. (Some call themselves ‘spoonies’. I refuse to do that, or to refer myself as a pwme – person with ME. This illness may have dominated and restricted my life for 34 years and has no doubt hugely influenced the person I have become, possibly even for the better, but, as far as I’m concerned, it does not get to be an integral part of my identity.)
Living with ME is like living with a faulty mobile phone battery. However much you try to charge it, (sleep, food etc), it is never fully charged. I reckon I’m lucky if I have 20-30% at some point in the day. Every tiny activity depletes what charge I have by an unreasonable amount. That last 10% can go in a flash and suddenly I am on the floor and my legs won’t work.
The latest biomedical research findings are starting to explain this: impaired energy production at a cellular level causing the multi-system breakdowns found in ME; a broken aerobic energy production system; the body desperately trying to create energy using alternative, less efficient, systems and producing more problems and symptoms in the process.
The advice for trying to manage this, and maximise your potential for doing things without actually making the illness worse, is to pace yourself, ideally using a heart rate monitor to help, and restricting or avoiding activities which take you over 60% of maximum heart rate for your age. This is problematic when just walking the 5m from my bed to the loo takes me over my limit of 101. As does pretty much anything where I am on my feet or moving my arms or legs.
My heart rate once hit 196 doing some washing up. (I now have an actual graph proving that washing up is bad for me which is an unexpected bonus.) Along with ME I also have POTS (postural orthostatic tachycardia syndrome). Medication and pacing help a bit but my body doesn’t cope well with being upright. At the end of the day my heart rate monitor (really a sports watch) congratulates me on my high-impact work out (having a shower and getting dressed), not realising that, for me, this is a bad thing. My heart thinks it is in a non-stop aerobics class whenever I move or stand up. It’s no wonder I’m knackered. And slim. I hit the ‘fat-burn zone’ just standing still, making a cup of tea, or brushing my teeth. Some people would pay good money for that.
It is possible that strict heart rate monitoring could increase people’s likelihood of recovery in the crucial early stages of the illness. But after 34 years, and having followed disastrous advice to push way beyond my limits in the early years, most likely doing a lot of damage in the process, there is a balance to be had between respecting these limits and making sure I move a bit and do what I can to maintain some degree of sanity. Lying in bed doing nothing all day every day is never going to be good for my muscles, pain levels, or mental health.
Usually people do not see the choices, the sacrifices, the price I pay for doing just about anything at all. When I drove myself to and from church and walked in and out a few weeks ago, rather than getting a lift and using a wheelchair, people got excited about seeing me more mobile. It is true that some weeks I have no choice. But every week involves some wheelchair-use and some walking, if only at home. People see one or the other and make assumptions. And they didn’t see that driving and walking meant I lost any ability to join in the singing. Or that, when I was on my feet, my heart rate monitor was screaming at me to sit (or lie) down as my heart rate was so high. Or that I completely lost Monday as a result. And Tuesday.
Things are not always the way they seem. Appearances can be deceptive, especially when it comes to fluctuating and largely invisible illnesses or disabilities. I am walking an invisible tightrope, trying to maintain some level of equilibrium physically and avoid a cycle of boom and bust, but needing to engage when I can with people and with life, look outwards beyond myself, in order to stay afloat mentally. Sometimes it is worth paying a price physically in order to do something that brings joy to myself and to others. It is a daily calculation. A balancing act.
For every action there is a very unequal, and opposite reaction. (I knew that ‘O’ level physics would eventually come in handy!).
5 thoughts on “The Price is NOT Right (but sometimes I’m willing to pay it anyway)”
Thanks Alison – that is such a clear description of what you have to juggle every day xx
Honest and thoughtful as always. Thank you xx
Love the ‘O’ level physics link, hadn’t thought of that before! The choices, the energy needed to even make the choices, this is our reality. I get why you don’t like to use pwme or Spoonie..for me it helps to know there are others struggling too with the same daily choices, the same quite secret language of spoons…one of the things I possess that healthy people don’t have!
Very powerful and even more informative and helpful, Alison, thank you.
One thing I don’t understand though: why can’t the Lent group come to you?
I have a teeny tiny housing association flat. I couldn’t fit a whole group in.