Last Updated on April 5, 2022 by melissanreynolds
What it really means when I say that I manage my chronic illness well, is that I have a lot of coping mechanisms in place and feel that I do a good job of balancing functionality with symptoms with getting on with life.
For the most part I get on alright. I manage my limitations, treat the symptoms, and do life on my terms. I prefer to focus on what I can do and keep a positive attitude. When I share online, I choose to maintain a proactive and hope-focused tone.
Then something will happen to trigger a fresh wave of grief at those limitations. At the symptoms I must manage all day every day. Yes, a “well managed” chronic illness is still constant work and continuous symptoms.
Recently I received another “if you just push through” and “it’s all about mindset” speech that people so like to give. Usually while discounting my experience, comparing their own experience (which is never the same) and diminishing how I feel.
At the time of said speech I was dealing with a flare up of trigger points on my sternocleidomastoid muscle. This muscle runs between the base of the skull and the collarbone. It can make lying down or keeping your head still for too long (overnight) painful, cause headaches and all manner of discomforts. In addition to causing extra pain, it was making my sleep (already something I struggle with every night) even worse. So, the chronic fatigue was also worse.
This was in addition to the prolonged sleep deprivation of a 12-month-old who still didn’t sleep through the night. And the energy required to manage four small children, often alone.
And this set of trigger points had been well managed and quiet for some time. Re-experiencing dormant, or reduced symptoms is an upsetting thing on its own. Especially because I previously lived like that for many years with no help. The grief of chronic illness is cyclical, it is never done.
To say this speech upset me was an understatement. I cried. For a while.
Of course, I soon picked myself up and carried on with my pushing through, which I do every single day. I do not need external motivation for that.
But I thought it might be time for a dose of what it’s really like to live with a “well managed” chronic illness.
A typical day with chronic illness
I am usually exhausted by the time the children go to bed. But I make lunches, tidy the kitchen, have a shower, and finally sit down on the couch with my heat pack on my neck, some dessert and watch a sitcom with my husband. The timing of my evening routine, taking my medicine, and beginning to try to go to sleep must be well balanced. If I wait too long, or go too early, I will not fall asleep easily.
Can you imagine having to be so careful about something so simple as going to bed?
If I’ve timed it right, done some stretching, reading and a body scan meditation, I can fall asleep relatively quickly. I will wake at least several times, sometimes it will be for the baby, other times due to pain, or good old insomnia. I achieve the bottom of the “normal” range of deep sleep on a very good night. (Read: I suffer chronic, deep sleep deprivation).
Can you imagine being so exhausted yet in so much pain that you can’t sleep? Fun fact: Studies that interrupt deep sleep over a period of a few nights end up giving the patients chronic pain.
Waking and getting up are difficult. My body is stiff, I feel like I need at least five more hours of sleep and often have a headache. I gently mobilise with micro stretching and then jump into the morning routine with four small children.
Note: No “just” getting up early, working out and running into the day.
My energy envelope, according to my favourite symptom rating scale, is 60%. I have about 60% of the energy and ability that most people have. The day is full of pacing (alternating rest and activity), working on getting my steps in (I aim for 7000 which is the sweet spot of not easy but not painful), and trying to avoid perpetuating factors. The computer is a big perpetuating factor, so I must be mindful of ergonomics, take regular breaks and not spend more than a few hours per day on it.
After lunch I take a Yoga Nidra guided meditation break. I cannot nap, but I also cannot function without a proper rest. If I don’t have this rest, my afternoon is miserable (the pain and the fatigue levels are high). I am stubborn about it now and it makes all the difference.
A daily rest sounds nice, doesn’t it? But now imagine feeling so poorly because you can’t fit it in.
The evening is a whirlwind of showers, homework, dinner, cleaning up, lunchboxes and getting children into bed. My energy is gone by the time they are in bed.
On the surface, this might seem a lot like a usual mum’s day. And you’d be right. I manage all the things. But let’s zoom in on a scene for illustrative purposes.
The night after the push through speech, I woke every hour or two with neck pain and had to massage the trigger points, do gentle stretching, fit my pillow around the base of my skull and turn on the electric heating pad. When I got up, I had a headache and the muscles in my upper body were stiff. Usually, I wouldn’t take medicine within the first few hours of getting up because movement and my heating pad usually help. This day, I needed it.
Fun fact: I sometimes don’t realize how bad the pain is until I have vomited because of it. I often don’t realise it’s a migraine (not “just” a headache) until I have vomited.
Even with the medicine, I had to keep asking the children to turn their volume down. Sound sensitivity with headache is real.
I also had another cold; I’d had several in the past couple of months. My throat was sore, my sinuses were mildly blocked, and I had a mild fever. While driving to school, feeling spacey from the fatigue, my fever kept spiking.
I’d call that pushing through.
Another thing I must do to “live well” with chronic illness is say no a lot. Every single event, responsibility, or to-do must be weighed on a complex formula of risk verses benefits. For myself and my family.
The other day, I was invited to a painting and wine evening. I am not a visual artist (I’m terrible visually), I like words. I also don’t drink (I can manage about one, any more than that interferes with my medication). And staying out late, especially when I am barely managing already is not at all appealing. Plus, I’ve been waiting months for time off all four children so that I can go for an infrared sauna. So, that was a no. It might have been fun, would have been a no brainer for most people. For me, the benefits were not there.
If the average person has 35,000 decisions to make in a day, then how many must I make? It’s a lot. Should I take the medicine? Which medicine? Should I push myself to do this thing? Will it be worth it? If my symptoms increase so I can do this thing, will they reduce again? Will this person diminish my experience and make me feel bad today? Do I really want to do that thing? If I eat this doughnut, will it be worth it? (The answer is always no; it never is what you expect, refined flour and sugar is never worth it).
Summary – “Living Well With a Chronic Illness”
This is not meant to be a sympathy piece. I just wanted to share behind the curtain a little, there is obviously a lot more to it than this. There are people who are higher and lower on the symptom rating scales so their days look radically different. But this is a little insight for those of you who were interested.
What I’d like to end on is this, we never know what someone else is going through. So, the best way to approach any conversation is to share your experience and NOT comment on another’s. Who cares if you think they are a pansy and don’t push through enough? You’re only going to upset them, and you clearly don’t know what you’re talking about.
Also, my experience does not diminish yours. My experience has nothing to do with yours. We don’t need to compare. We can hold space for one another to share or not talk about it.