What Feeling ‘Better’ Looks Like When You Have a Chronic Illness

Something peculiar can happen 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 some chronically ill folks like myself may have forgotten what being “well” feels like. How much does a person who is well feel on any given day? What’s the threshold for fatigue between well and unwell people? And at what point is pain pathological as opposed to the aches and pains everyone simply gets sometimes? When you add the fact that people sometimes adapt to the realities of life without even realizing this process is happening, we get a problematic scenario.

A few months ago, my doctor told me my health had deteriorated further. I couldn’t understand this at all. Sure I was exhausted, slept a lot and was in a lot of pain. But you see, my point of reference for the past 10 years has been exhaustion, pain and one health issue 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 the basics. I talked to a friend of mine about activities healthy people can do on any given day. It turns out healthy folks 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 don’t experience pain requiring more than a couple of over-the-counter pain relief pills to tackle.

I knew my daily life wasn’t the daily life of a healthy person, but what had eluded me was how far removed it had gotten away from “normal.” So I got a pen and paper and wrote down all the things I usually did in a normal day.

I sleep for 12-14 hours and still wake up feeling exhausted. I require high doses of medications to control pain, so I can put one foot in front of the other and get out of bed. I avoid supermarkets, shopping centers, drinks with friends, restaurants, coffee shops, parks and playgrounds because they involve walking, exhaustion and worsening symptoms. I have to dress like the weather is always tropical — even when it’s snowing — to control the swelling, redness, heat and pain of my limbs whose nerves are malfunctioning.

If that is the everyday reality of my health, then how do I even begin to gauge improvement or deterioration within it? This may sound ridiculous, but my personal measure is showers.

At my best, I have a shower in the morning and a bath before bed every single day. When I feel mildly unwell, that gets cut down to a quick shower every morning. Moderately unwell means a shower every two to three days. The stage of “I should be in hospital attached to drips” means a shower every seven to 10 days. If I allow myself to cross the 10-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 on a good day.

So you see, my “better” may never be what the general population may think of as better. My experiences of life and normalcy will always be different. And that’s OK. “Better” may never mean cured or stabilized, but if it means getting to do a few more of the simple things one enjoys doing a bit more frequently, then that’s something we could all aim for and celebrate perhaps.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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