What Does “Better” Look Like?

This is a question so often on the minds of chronically ill patients. I, for one, know it’s haunted me for years. You see something very peculiar happens when one is chronically unwell; the measure of comparison against normalcy just vanishes and is replaced by stages of unwellness and disease. In practical terms that means that a great number of us chronically ill folk have forgotten what being ‘well’ feels like. How much does a person who is well do in any given day? What’s the threshold for fatigue between well and unwell folk? At what point is pain pathological and what could be the aches and pains everyone gets sometimes? Add to that that sometimes people adapt to the realities of life without even realising this process is happening and we get a problematic scenario.

A few months ago my consultant told me my health had deteriorated further. I couldn’t understand this at all. Sure I was exhausted, slept a lot, was in a lot of pain. But you see my point of reference for the past ten years has been exhaustion, pain and one health mayhem after another. Normalcy is no more. And when that happens, even deterioration is hard to detect for the person experiencing it.

So I went back to basics. I talked to a friend about activities healthy people can do on any given day. Turns healthy folk are able to take a shower once a day if they so choose, can do more than one activity a day without collapsing, can function on seven to eight hours of sleep a day and generally do not experience pain requiring more than a couple of paracetamol pills to tackle. Oh! And if they overdo it one day, that does not mean they spend the next day on the floor writhing in pain/low bp/swelling/exhaustion. I knew my daily life was not the daily life of a healthy person you see, but what had eluded me was how far removed it had gotten from ‘normalcy’.

I got a pen and paper and wrote down the things I did in what was a normal day for me. Things like sleeping for 12-14 hours and still waking up with difficulty and exhausted. Requiring high doses of opioid medications to control pain to even put one foot in front of the other and get out of bed (whoever objects to the regular use of opioid medications can talk to me about it after dislocating their limbs every day for ten years; oh! and having widespread arthritis, tendonitis, bursitis and busted valves from blood clots on top of the other stuff too!). Avoiding the supermarket, shopping centres, drinks with friends, restaurants, coffee shops, parks and playgrounds like the plague because they involve walking, exhaustion and worsening symptoms (Oh! and the sun! Let’s not even get into that.). Having to dress like the weather is tropical always, even when it’s minus 3 and snowing, to control the swelling, redness, heat and pain of limbs whose nerves are malfunctioning. Timing the flow of one’s day by medications: One injection before breakfast, one with a morning coffee, one before bed, interspersed by pills too numerous to even count. Calculating every single moment of the day against what needs to be done after or the following day and measuring spoons automatically * through the day to gauge the probability of an activity occurring. Having to time life according to symptoms outside of one’s control despite all the above.

If that is the every day reality of ill health then how does one even begin to gauge improvement or deterioration within it? This may sound ridiculous, but my personal measure is showers. At my best I used to have a shower in the morning and a bath before bed every single day. Mildly unwell and that got cut down to a quick shower every morning. Moderately unwell means a shower every 2-3 days. The stage of “I should be in hospital attached to drips” means a shower every 7-10 days. If I allow myself to cross the ten day mark without a shower, we’re at ICU level of disease activity. This gauge of disease mayhem against ordinary day to day activities is, of course, different for each of us and depends on the things we most enjoy doing (and that do not cost an exorbitant number of spoons) on a good day.

So you see our ‘better’ may never be what the general population may think of as ‘better’; our experiences of life and normalcy will always be divergent. And that’s ok. Better may never mean cured or stabilised, but if it means getting to do a few more of the simple things one enjoys doing a little bit more frequently then well…that’s something we could perhaps all aim for and celebrate.

Zoe

* This is a must read for whoever is not familiar with the spoon theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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