Balancing the Good and Bad Days With Chronic Illness
The last few months have been a strange time for me. After a relatively good January, February through March was one of the longest bad spells I have had for a while. The bad days far outnumbered the good days.
My health always goes in waves – bad patch, good patch, bad patch, good patch. But the length and severity of the bad patches, and the length and goodness of the good patches, varies massively.
A longer term good patch might be two to three fairly bad days, followed by four to five pretty good days, then back to a few bad days. February and March are a longer-term bad patch. This means several weeks at a time of bad days, followed by perhaps one or two days of feeling a little better, of hoping that the bad patch was over and I was on my way to a better place, only to be met by another few weeks of bad days. It is at these times that my mental health suffers most and I find it hard to cope.
Having several weeks of bad days with only the odd good day or two in-between, makes it feel very relentless. Somehow, having at least a few good days in a row makes me feel like I’ve had a bit of a break from it all.
I get to do some nice things, like meet some friends, hopefully do some yoga and tidy up the house a bit…Before it all comes crashing down again. But the trouble with the longer-term bad patches, is that the good days are so massively outweighed by the bad days. There is nowhere near enough time to fit in all the things that I want or need to do, such as the chores, the responsibilities, the workload, the relationships, and, most importantly, the fun.
The strange thing is, those one or two slightly better days in between, can actually be worse than no good days. When it’s bad day after bad day, I somehow come to accept that I feel shit, and that there’s not much I can do about it. I know that nothing much is going to get done, and instead, each day just becomes a quest for survival. The aim is simply to make it to the end of the day, no greater expectations.
But when I have a glimpse of a better day, it gives me hope that maybe a better time is up ahead. Maybe this is it. Maybe I am actually recovering and from now on it will just get better and better, and I will never be as sick again as I was yesterday. Maybe tomorrow I will be able to clean the house. Maybe tomorrow I will be able to go to yoga class. Maybe this weekend I will be able to catch up with some friends. This hope with chronic illness is important.
When all hope for a better future is lost, chronic illness becomes unmanageable. And in the bigger picture, I still think this is true.
But day-to-day, hope can also be crushing. Because when I wake up tomorrow and it is, in fact, not a better day, there is a sense of loss. Grief, even, for the good day I thought was mine for the taking.
There is disappointment that I won’t be able to fulfill my hopes of getting the housework done or having a productive day at work. Guilt that I will have to let my friends down, for the millionth time, because those plans I had scheduled on a good day, are no longer manageable when today is a bad day.
On the good days, my awareness is suddenly brought back to all the things I want and need to be doing. I feel like I have been left behind from my own life. Like I have to catch up on all the things I missed out on on the bad days. And I have to suddenly catch up on it all right this second, before the opportunity is taken away again.
Chronic illness is the most enormous juggling act. I have the to-do list of a healthy person, with only a fraction of the days in which to complete it. The first good day after a bad spell brings so much pressure. What do I prioritize today? My instinct is to prioritize work.
My PhD is important to me; it matters. And after several days, or even weeks, of feeling like I have only been touching the surface of what I want to be achieving, the sense of suddenly being able to work at full-pelt feels liberating. But then…What about the housework that needs doing?
Those jobs that I simply have not been well enough to worry about, like scrubbing the shower or changing the bedsheets or emptying the bins. Wouldn’t it be great to get those jobs done so I don’t have to worry about them if tomorrow is another bad day?
But then, what about yoga? Oh how nice it would be to roll out my mat and stretch my body and feel my breath, focusing on how good I feel after being curled up on the sofa for so long. Or better yet, I could go to a yoga class and combine the joys of yoga with a change of scenery and some social contact.
But, what about those friends I’ve been canceling on recently? Wouldn’t it be great to give someone a call and catch up over a cup of tea? To be able to talk to someone about what a tough time it’s been recently and how grateful I am that today is a brighter day. To ask how they are and what has been happening for them. To chat, to laugh, to moan. To be a friend. And what about my relationship?
Wouldn’t it be amazing to head out for dinner or go to the theatre or out for an evening walk? Wouldn’t it make me feel so happy, so alive, to be able to be a girlfriend and focus on his needs, on our needs?
How on earth does anyone make such choices? We all lead busy, stressful lives, and we all have to decide what we want to priorities. But when the number of days available to you are cut so significantly, and when you have absolutely no idea when the next available day will be, how do you decide?
And then there is the risk of trying to squeeze in too much, of tiring myself out and bringing myself crashing back down into another bad patch. Every tiny decision of how to spend my time feels heavy because the consequences are enormous. There is a constant pressure to make the right choices. To not fuck it up, for myself or anyone else.
And yet, having to make these choices forces you to think about what is really important in life. I don’t want to live in a pigsty, but does housework really matter? When I’m on my deathbed will I look back and say, “I wish I had changed the bedsheets more often?” My PhD is important to me and I want to do well, but as PhD students we are always taught to let go of perfection, to learn how to just be “good enough.”
Perhaps I am lucky that chronic illness doesn’t even give me the option of perfection, that I have already had to learn how to be OK with being “just good enough.”
What really matters to me? Relationships. Nature. Yoga. Being present in the here and now. Making the most of all the things I am fortunate enough to have in my life because, as chronic illness has taught me, there is no guarantee that those things will still be here tomorrow.
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