Self Care Recalibration with a Chronic Illness and a Baby

This post is part of my mini-blog series about self care. Click this self care week tag to read all the posts!

When I was thinking about folks whose self care priorities I admired greatly, my friend G immediately came to mind. G left me a comment that changed my life a couple of years ago. Researching for my Love for EveryBODY workshop, I wrote a Facebook post asking friends with gender non-conforming bodies and/or chronic illnesses how they worked to love their bodies. G said “Stress is a toxin.” I quote that all the time and it has helped me reconceive how I think about self care. I have known her for over a decade, since we were both baby queers in nearby metro areas, and was curious how self care changed during and after the diagnosis of Multiple Sclerosis and now that G is a parent in her early thirties how it has changed, too.

photoMy friend G and adorable baby L!

1. When you were diagnosed with MS (at what age?), what was your process around assessing the kind of self care you needed as a person with a chronic illness? What kind of self care did you need to engage in?

I was diagnosed at 26. It was what seemed to me at the time a long time to figure out what kind of self care I needed. A diagnosis like that is SO overwhelming. I really think it was probably two years till all the major pieces of self-care are realized, and it’s an ongoing process of identifying how certain parts of my life need to change in order to enact the self care needs, including ending relationships with people or organizations that used to work for me but I might come to realize induce more stress than joy, for example. Those realizations are difficult and ongoing.

I think the “process” involved a lot of trial and error, and a LOT of re-evaluation of the truths/stories I had in my head about the kind of person I was and what I did with my life. For example, at the time I prided myself for being super scrappy and always landing on my feet, getting by with very little financial resources, always believing things would get better in the future and building a lot of financial and social/emotional debt in the present. I had to accept that I needed to read and buy into “west coast” woo-woo talk of mindfulness and do yoga and eat like a hippie. I needed massage and to drink tea and to calm down.

I came to realize these things out of desperation at first–I was so sick restorative yoga was about the only kind of movement exercise I could do, and I had always ran and ridden my bike everywhere. I could tell that gossiping or ranting about something till I was blue in the face only made me feel extra exhausted and didn’t help things.

When something happens like you get really sick, you end up with piles of bureaucratic BS, with a works that seems unfair and unable to accommodate your sick self, and when I fumed for days about the unfairness of the insurance company or a workplace policy, I would feel sicker, and saw that nothing productive got done anyway. So the calculations look different now. I could spend 4 hours on hold and arguing with Time Warner [an American cable and internet service provider] in order to maybe have them correct the $15 error, or I could think “Would I pay $15 not to feel like this?” and call it a loss and move on. Is that awesome? No. Does it hold that evil company accountable? No. Does it save my health? Yes. I had to really focus and choose my political battles, and I really think my targets have gotten clearer and the related actions more efficient. The same is true socially. My world of what and who I cared about got smaller, and that’s ok, (even though it’s sometimes lonely) because the quality of those fewer connections are better.

Also I came to figure our that, as a person who always took pride in my paid-work ethic, that in order to stay alive I had to treat my self-care like a job. I put “exercise” on my work calendar and held myself to it as if I was going to teach a class. Even if I only ended up walking when I had hoped to run. Even if I couldn’t do it as long as I wanted. Required. As was sleep time, as was not drinking alcohol. Things got very clear and firm.

2. What surprised you during that process?

I think what surprised me at first was the way in which some deep themes, like scarcity, or putting others’ needs first until I blew my lid, we’re not isolated to say, finances or romantic relationships. They were deep and everywhere. I had to show up for myself in a new and major way. And it was scary.

I was also surprised that eventually, I was happier. Again that was some “west coast woo” stuff that I was sure my Protestant Midwest working class cultural pride had no time for-that happiness linked to healthiness. But it was and is true. The happier I am the way healthier I am. Not that I don’t get sick anymore or don’t have MS. I do. But I thrive and shine much brighter in the times between flare ups.

3. How did your self care needs change when you had a baby? What was anticipated and what was something you had to adjust to?

Hahaha. Well. I have to say I still haven’t mastered this one. I draw from lessons when I was a non-parent with MS, but it requires a whole new mantra. Because if I had a TON of extra cash for daycare when I was not working (I work on my phd work 2 days during the week and stay home with our infant 3 days a week) I could maintain my self-care bar. I could schedule yoga 1 or 2 times a week, go on a run a couple times a week. But that’s not happened. Massage and acupuncture has been greatly reduced. One income and a baby is real tight. So I’ve had to modulate what gets me through (aside from the added joy of the miracle of my baby and the stellar support of my partner) is telling myself “It will not always be like this. It will end eventually.” And it does. The days of sitting in how position for hours and hours has passed. The days of not being able to do anything like pee without the baby in my sight has ended.

And also self care right now looks like “good enough.” The day has ended and the dirty dishes cover every inch of my kitchen? I did good enough. Sit down in the couch with your wife for one hour of no-responsibility chill time. I can’t get a vigorous run or yoga session in? I make the baby’s nap time a sleep in the Ergo [a baby carrier that straps to a big human] while I take a 4 mile walk. It’s a lot of approximation and survival. And it has to be good enough for now.

Really it’s an extension of the major learning curve when I was first diagnosed, which is self-forgiveness. I was do disappointed in myself for having the disease, for being able to do less. I still have to practice self-forgiveness for not doing “enough” self care, or for not getting “enough” of my work done or not being a present enough parent the day I felt like crap. And I found that this practice allowed me to have a lot more compassion and generosity towards others.

4. How to you manage self care priorities as a parent with a chronic illness?

See above I think re: good enough and self forgiveness. Also, my wife is really amazing and if she hears me have a tired MS cough she sends me to bed or calls one of her besties over to our house to watch the baby so I can rest when I wouldn’t have done so myself.

5. How do you deal with “missing days” and let yourself off the hook for them?

See self-forgiveness. Also–scaled expectations. I have very long term goals. They are not made or broken in one bad day. I have had to accept that if they are, with the exception of having to push through one big presentation or deadline or something, they are not environments I want to be in. Like, if I am unable to think one day I had planned on reading a ton, then I do something mindless like delete emails, then rest. If my whole career as an academic crumbles because I strategically read the introduction of each book the day before class, it’s not a sustainable career. Also I’ve had to let go of the over-achiever image of myself I’ve had since I was little. I am not going to win 1,000 awards in grad school for service, teaching, and research. I have prioritized my health, stability in my family life, long-term involvement with political movements, and research. My work in the world is not to win awards. It’s to, as I think of that Alice Walker quote all the time, find my work in the world and do it. I will raise supported, loving, engaged children. I will have a robust and happy life-long loving relationship with my sweetie. I will produce research that changes the tides of the homelessness-industrial-complex. I will be a part if meaningful political change. I am doing it, and it us bigger than one day.

6. You told me once you treat stress like a toxin and nix it in the bud right away. How did you realize stress was a toxin and what are your body/mind/emotional warning signs that you’re feeling stressed? What do you do to nix it in the bud?

I can be a super intense person and I tend to recognize stress if something becomes invasive thinking that I can’t stop looping back to, can’t seem to let go of, or if something is taking a lot of my time when it shouldn’t be. Those are the “quantitative” things if you will (the things I can count, recognize, and reason).

Physically/emotionally I notice that I feel anxious and spent. Both exhausted and amped up. I tend to shut down, then suddenly come out of the shut down place very angry and upset. These kinds of things.

Some things, like when my daughter was in the ER last week, are necessarily stressful and they can only be mitigated–ask our friends to bring us dinner in the ER, be kind to and find the joy in my wife and baby even though it’s stressful and my body is tanked by it, cancel our weekend plans so we can just rest.

Other things, like people who are drama, involve not engaging, or being real clear like “our interactions do nothing but stress me out so I am not doing this anymore. I wish you well.” Some things, like undue stress when teaching, involve setting up really clear boundaries from the get go–I don’t check email between 5pm and 10am. Don’t expect me to. I don’t haggle about grades. Period.

Actually, I find email in general, or really any communication devices that are “input” a no-go after 5 or 6. I can’t have stress if I don’t know about it, and I tend to be most tired and ineffective after 5, and stress interferes with sleep, and 8 hrs of sleep is a requirement. So even though I am not working for wages right now I tend to avoid email or lots of texting or going places in the evening. It is time to take care of my and my fam’s bodily needs and go to bed. It sounds so boring on paper, but it’s really great. I love routine, I love slow, quality interactions with friends coming over for dinner. Getting MS is stressful and has been terrible, but it’s given me the impetus to have so much discipline and perspective in making my life center around what’s important, and at a fairly young age for our culture. Thank the Goddess. I am blessed.

Thank you so much G for this interview, this was amazing and gave me so much to think about. We don’t often learn how to distill our core priorities in life and then how to align our time spent with those priorities.

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Comments

  1. Thank you so, so much for this interview. I’ve been dealing with chronic pain for the past year or so and am still in the middle of the diagnostic process (MS is one of the top contenders, but it’s pretty much wait and see at this point.) Trying to reset my limits and figure out what my body needs to function as well as it can is really hard. The concept of good enough-both with big things, like realizing that I’m probably not going to finish my undergraduate degree in four years, and little things, like letting dishes or the laundry go for an evening, is so important and still something I’m trying to put into practice.

    Chronic illness (especially when you’re young) can feel so isolating, but articles like this and knowing that other people have been in similar situations and gotten through is really helpful to making things feel a little bit smaller and a little bit more manageable.

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