Business Musings: Writing with Chronic Health Problems
This morning, I got a piece of well-intentioned advice from someone I’ve never met. I get advice often. I also get great tips and links from you readers, notes about my math errors and typos (of which there are far too many), and all sorts of marvelous things.
I also get well-intentioned, if wrong for me, advice. This particular piece of advice is one I get monthly, sometimes weekly.
It goes like this: At your age, it’s time to stop running and do low-impact cardio. (Or swim, or go to the gym, or lift light weights, or do yoga.)
The implication is that running is bad for me and my health, based solely on my age, and maybe on the fact that I’ve injured my knee in the past.
The knee injury, according to several doctors, had nothing to do with running. And, for the record, the knee injury occurred when I was standing still.
Lots of studies show that running is the best exercise for any age, period. And that knee thing? That low-impact thing? All myths. Here’s a bunch of studies about the good things running does for a person.
It is, by far, the best exercise you can do (and the cheapest).
But that’s not what’s important to this blog. What’s important to this blog is this: Running is the best exercise I can do.
Because I do it.
The best exercise for you is the one you’ll actually do. The one you look forward to. The one you enjoy.
I loved swimming, but it took 3 hours out of my day—getting to the pool, socializing (introvert me hates that), showering before and after, getting home and oh, yeah! Swimming. Plus the chemicals just aren’t good for me, and I don’t live in a climate that allows me to swim in the lake year-round.
I had a gym membership that I used for years and years. I still gained weight. I hated the workout, hated the TV set on some stinky cable news channel (I don’t care which one—they’re all stinky), hated the boredom, which I fought by listening to audio books. I did my low-impact workouts, I got an award-winning short story out of my spinning class (aptly titled, “Spinning,”), and I was diligent.
I went cycling with a friend for two years and rode in my first (and only) century. That ended when I set my bike down fast rather than hit a car blowing a stop sign, and broke my elbow. (Got a story out of that one too, when I could type again.) In cycling, it’s not if you fall. It’s when. My first bike accident (at 9) knocked out my front teeth and left me with permanent scars. This last one left me with an elbow that complains every time it rains.
I still gained weight. I still felt crappy. I still had all of my chronic health problems, so I missed a lot of scheduled exercise events because I was ill.
It wasn’t until I got a Fitbit on a lark that exercise became do-not-miss for me. Why? Because I can hit my 10,000 steps even when I’m sick. I shuffle around the house like the walking dead, determined to hit that magic number, because I’m anal, and because finishing my steps every day before midnight is something I can control.
The knee injury got in the way. I made my doctor give me a schedule and benchmarks so that I wouldn’t start up again too soon, but also so that I would start as soon as I could. He thought I was nuts, but he did it. And I followed it, even though I didn’t want to. (I wanted to hobble around the house to hit that magic 10,000 steps.) Even with an injured knee, I got 3,000-4,000 steps per day (using crutches), because I really can’t sit down for very long.
It drives me crazy.
So why am I telling you all of this? This is a writing blog, right?
Because dozens of you have asked me, both privately and in comments, how I write with a chronic health condition.
There really is a trick to the writing while chronically ill. But the trick is personal, and it’s tailored to each individual person.
So, more personal stories—and then tips.
I have many many many allergies. It’s taken years to identify them, particularly the food allergies. I’m deathly allergic to perfume and soaps (particularly anything with manmade glycerin) and that causes more problems than I can say. It’s also the allergy that’s forcing me to rethink travel.
The worst health problem I have, though, is chronic migraines. From the age of 19 on, I got migraines so severe and long-lasting that I would lose weeks to them. By the time I reached my mid-thirties, I would have migraines 21-25 days per month.
And yes, those were the years I was building my career, and editing The Magazine of Fantasy & Science Fiction. I was working at an international level career, traveling (even though it made me sicker), and was horribly ill through much of it.
I ranked the migraines by severity. I could work through a mild migraine. It was just pain, after all. If I could think relatively clearly, I could read. I could write both fiction and non-fiction with a “mild” migraine.
The mid-range migraine—the kind where I couldn’t see anything around me clearly, the kind where I didn’t feel safe driving—I could still read when I had it. Or write nonfiction, with a lot of spellchecking. But I couldn’t do close work or go over a copy edit or line edit anything.
I could also teach and speak in front of a group with a headache that bad, as long as I was talking about something I knew. Giving a prepared speech, with a text and a teleprompter? Impossible. But off-the-cuff? Easy, easy, easy. Just as long as no one expected me to remember the details the next day.
The bad ones were truly bad. I couldn’t get out of bed for some of them, could barely speak, certainly couldn’t think. I’d have 5-7 of those per month, and if I managed them right, the worst of it would last about six hours. If I managed them wrong, I might have that level of migraine for days.
So…how did I work with all of that? Mostly, I didn’t. That’s the odd thing. If I had a nine-to-five day job, I would have had to go on disability, like so many of my friends in similar situations. Either that or have a truly understanding boss, one who knew I wasn’t faking when I said I couldn’t come in until the afternoon—and maybe not even then.
With the exception of one job I had with a truly understanding boss, I never worked traditional hours. When I had day jobs, I had unusual ones, the kind with flexible hours or the kind that were performance based. (If I finished all my work, I could go home.)
So, as we’re talking about working through chronic health problems, keep in mind that as writers, we’re in control of our own schedules. We figure out how to manage the day-to-day business.
The word management is the key. The other key is acceptance. (I have a tougher time with the second one.)
Notice, I can still give you, years later, the schedule of my migraines. I didn’t always know when they would arrive or how long they would last, but I could manage my response to them. I could avoid triggers—changing time zones, for example. Changing air pressure. Stress.
Over time, I learned what foods aggravated the migraines. Eventually, I realized that the food allergies existed (I thought it was a migraine problem, not that the migraine came from the allergies), and cutting all the things I was allergic to out of my diet reduced the migraines by several a month.
Working with my doctor helped as well. I found the right doctor, and I gave her my headache chart. I’d kept a chart on my calendar to prove to myself that I wasn’t a slacker. If I failed to get work done, it was because of a migraine, not because I was lazy.
That habit proved effective when I started working with this excellent doctor who helped me manage the migraines, and bring them down to only 14 or so a month.
But still, 14 a month is roughly half the month with a migraine. I could have given myself permission not to do anything at all during that period of time, but I’m not built that way.
So I evolved around the migraines.
Here’s what I realized I could control:
- I could control the triggers—and avoid them.
- I could exercise. The migraines got better if I exercised. And I could run (or walk) with a migraine and, magically, the migraine often got better.
- I could divide my work days according to the migraines. Remember, I told you that I could work through some migraines. The key for me was to try to do the actual work I wanted to do. If that wasn’t possible, then I would move to “easier” work. If that wasn’t possible, then the couch it was for me for the rest of the day, so I could work the following day.
- I could prioritize everything. Rather than try to do all of the work all the time, I could divide the work into things that I absolutely couldn’t miss to the things I could let slide. (Filing, I’m looking at you.)
Even though it’s fourth on the list, prioritizing was absolutely the key to everything I did.
I examined my life and set my priorities. I don’t have children, and I have a writing spouse, who understands. (Thank heavens. More on him later.) I saw Dean every day, often for hours. We work at home, so we spend more time together than many other couples do. He’s a priority, but we don’t have limited time, so I didn’t have to schedule my time with him.
Therefore, some of the priorities most people have—family obligations, day jobs—are not the kinds of priorities I have.
Still, I came up with a list.
I needed to:
Write Every Day
Exercise Every Day
Manage My Food Intake
Get Enough Sleep
Sounds simple, right? But simple was what I needed, what I still need.
Notice what’s missing from the list? No email, no website work, no promotion. Those weren’t my priorities, and still aren’t. Those things can—and often do—wait.
Writing first. Exercise second. Food and sleep and reading. (Socializing with Dean is as natural as breathing, so it’s not even on the list: it’s assumed.)
It became critical to have food in the house, in case I couldn’t drive. On my good days, when I was the primary chef (Dean has taken that over for reasons to do with his health), I would cook extra food and freeze it for the days when I couldn’t cook.
I never beat myself up for sleeping too much. I got sicker if I had less than six hours of sleep, so if I occasionally had nine, I figured that was fine. I slept when I needed to.
When I got the Fitbit and started the 10,000 steps per day, I had to put exercise ahead of the writing. If I had to choose writing or exercise in the hour between 11 P.M. and midnight, I chose exercise. I finished those damn steps.
One reason I started running was because I could get my steps faster when I ran. That was all. It takes me a minimum of two hours walking to get my (these days) 11,000 steps. When I run, it takes 30-40 minutes. That’s a lot of writing time. I take two days off per week on running, and those days I’m always annoyed at the fact that walking takes so bloody long.
But the writing…note that in that list above, it’s first. Because I didn’t allow myself to do anything (besides eat breakfast) before I started writing. With those headaches, I might only have a few good hours in a day, and often they were in the early part of my day. Better to get to the writing first, because if I waited—for any reason—I might not be able to write at all due to my health.
In 2012, a vitamin supplement I was taking changed the added ingredients (the coating, essentially) without noting that change on the label. (This company was later sued by others and settled out of court.) The change added something I’m extremely allergic to, and I was poisoning myself by small doses daily. I got sicker than I have ever been, before or since. (I figured it out on my own, realizing that I got sicker after I took my vitamins, and I just quit taking vitamins entirely.)
Those days were so bad that I could barely get out of bed, barely function. I would stagger to my writing office, manage about 1,000 words, and be done for the entire day.
Looking back, I’m astonished I managed that much. I could barely heat up food. Yet I managed to write.
Because I had put into place that set of priorities. Write first, everything else second. I knew, without thinking about it, how to plan my day.
Get up, eat something, write. Repeat. Rest if necessary. Exercise when possible.
When I’m healthy, I can write 4-5,000 words per day on most days, with time left over for living, cooking, exercise, relaxation, and all the other things that normal people do.
So 1,000 words per day seems like nothing to me. Yet I can still remember just how hard those words came, and how important they were.
Because 1,000 words per day adds up. That’s 365,000 words per year—more than three novels worth. It was a heck of an accomplishment, and I’m still proud of it, because I know how hard fought and precious those words were.
So, I managed my days, down to the hour. I gave myself permission to rest. I also knew that I would lose days whether I wanted to or not.
Those “lost” days weren’t really lost. They were me taking care of myself, getting rested, making sure I didn’t lose more days by pushing too hard.
The migraines have eased, because I’m older (migraines decrease with time), because I know the triggers, and because I no longer eat the foods that I’m allergic to. I still have 4-6 migraines a month, but only 1-2 days of severe migraines, which is just heavenly.
And what I’ve learned was that something else happened in the down time. Not just rest (which I’m having to relearn how to accomplish when I’m feeling healthy), but thinking.
Apparently, I did a lot of creative thinking when I was down. Making connections that I wouldn’t have made otherwise, having weird realizations because my brain was scrambled. I’m a lot more original when I’m resting than I am when I’m pushing hard on something.
More to learn.
I didn’t just manage my days. I managed my month, and sometimes my year.
I had to be honest with myself about what I could accomplish. I couldn’t guarantee that I would get 5,000 words per day, nor could I guarantee 1,000. But I could guarantee that I could write as much as possible.
What I did was this: I averaged my writing output. I figured some days I would get 5,000 words, some days I would get 1,000. So I averaged my output as I planned my year. I figured I could manage 3,000 words per day. That wasn’t exactly true. But if I wrote four days in one week, got 5,000 words on two of them, and 1,000 words on two of them, then I would get 12,000 words—or the same as 3,000 words every day for four days.
Figuring things that way made the math easier.
Then I had to be honest about how many days I was down. That’s really hard for me (see acceptance, below). But I figured I’d have at least four days when I couldn’t write at all, and four more when I couldn’t write or read or do anything.
Or…you know…I could say I didn’t work weekends, for the sake of my planning. Five days per week, 50 weeks per year (two weeks of travel or extreme sickness or vacation).
With those numbers in mind, I would then figure out how much I could write and how fast.
In the days when I worked to a traditional publishing deadline, I’d start with the do-not-miss deadline, and then subtract a month. That was my real deadline.
(For example, if the drop dead was July 31, then my real deadline was June 30.)
That system built in some time in case I had a particularly bad period leading into it, and also gave me a reputation for being early or on time with most of my projects.
Using the real deadline, I would then analyze how long it would take me to write the project at 3,000 words per day. So, if I had a 90,000 word novel due, I had 30 days of writing ahead of me. At five days per week, that would take me six weeks. I added a seventh week for yet another cushion, added an eighth week for first readers and cleanup, and found my personal drop-dead start date.
I would try to start sooner than that, depending on the deadline.
So…let’s say that July 31 project was a 90,000 word novel. I needed to have it done by June 30. Factoring in all of that, I would need to start the novel no later than May 8. But May 8 is a weird number, so I would start the book on something easy to remember, like May 1.
I would often finish by my real deadline. Occasionally, I would get too close to the drop-dead deadline for my comfort. I would let my editor know I was running a little late. Even then, I usually made my deadline on time, but I still built in cushion.
I didn’t push any harder than I could. I didn’t set unreasonable expectations. I made sure I took care of myself, and part of taking care of myself is writing as much as I possibly can.
Because I love it. Just like I found a form of exercise I like.
Necessary stuff, and stuff I still do. Because just going to the grocery store can knock me flat for days if someone shows up wearing too much perfume and gets too close to me for an extended period of time. If I have an allergic reaction to that person’s perfume, I’m down for the count for hours to days. And I still have to build that stuff in. You can’t plan for it (As in: I will have an allergy attack on January 3, at 5 p.m.). You can only cope with it once it happens. And it still happens way more than I like.
Dean also has chronic health issues. (He gave me permission to discuss that.)
Because he suffered several incidents of heat stroke in his years as a professional athlete, he is extremely sensitive to heat. And he had a stroke five-and-a-half years ago that left him partially blind in one eye. He has high blood pressure, which he wasn’t managing well at the time of that regular stroke (due to extreme stress and a decision he and his doctor had made on plans that changed overnight).
Dean has to deal with all of those things, and they’re tied together.
First, he has to manage the actual health part. He has to eat right, and exercise, and take medication for his high blood pressure. He has a blood pressure cuff at home, and he uses that whenever he’s feeling like the blood pressure is spiraling out of control (or when he’s under a lot of stress).
He too has travel restrictions, mostly due to the heat stroke in his past. He has to be very, very, very careful not to overheat, which isn’t just about hot summer days. It’s also about overheated rooms in the winter, and not paying attention when he’s getting hot.
He has to be aware of his circumstances at all times, make sure he’s getting enough fluid, and cool his body down immediately if he’s at all worried about overheating.
The eye, though, that’s the one that has the greatest impact on his writing. Because he is very aware that he only has one eye left, and if he loses sight in that eye, everything changes. Writing will still be possible, but he’d have to learn a whole new skill set, which he emphatically does not want to do.
How does he manage? He micromanages his day, with an emphasis on resting his eyes.
He limits his computer time to 30-40 minutes per session. During that session, he makes sure he looks into the distance several times, and focuses on something far away.
He then leaves the computer and closes his eyes for at least five minutes in a dark area, easing eye strain.
He takes a ton of breaks when he’s reading on paper, for the exact same reason. And when he drives somewhere (also causing eye strain), he stops the car and walks around a lot.
Even in periods of extreme deadlines and high stress, he does not vary these routines, because to do so would harm his health worse.
So do I.
The key to management, though, is…
I love to think that I can do anything. And then I remind myself, as those of you who read this blog regularly, that I will never play professional basketball. Even if I had been born after the WNBA was formed, I would never have played professional basketball. I’m not tall enough and I’m not fast enough to compensate for being short. Wouldn’t have happened, no matter how much I wanted it to.
When the migraines were at their worst, I struggled mightily with the limitations they placed on me. Dean would sometimes have to remind me that rest now equaled a good day later.
I am struggling right now with the limitations that the perfume allergy (which has grown worse over time) has placed on me.
But only through accepting that I have this issues can I plan for them. I could easily have promised books to my traditional editors on 30-day deadlines, thinking I would be able to write 5,000 words every day for 30 days.
I would have been wrong, and angry, and frustrated.
Knowing—and accepting—my limitations made my writing possible.
Knowing—and accepting—my limitations made my career possible.
Rather than focusing on what I couldn’t do because of my health, I focused on what I could do.
Did (and do) I have days when I feel sorry for myself because I can’t do something? Sure. But the key isn’t focusing on the negative. The key isn’t really focusing at all.
The key is doing.
I can’t dunk a basketball. I’m not a professional athlete. But I’ve been running long enough now that 3 miles is not tiring or even that unusual. (I kinda miss that extreme effort: I like the challenge, and now I have to ramp it up.) That makes me an athlete of sorts. Which is weird, considering where I started.
I might not be able to write as much as my husband. He can write 3-5,000 words after working eight hours on other stuff. But I’m consistent, and I get a lot done anyway.
Because I’ve learned to accept the chronic health problems. I live with them. They’re as much a part of me as my bone structure.
The main thing about chronic health issues is accept them, then manage them. Work to keep them from impinging on your life too much. When they do impinge (and they will), accept that’s part of who you are.
And realize you’ll struggle. We all do.
I do, weekly. I really do hate rules and regulations, even when I put them on myself. But I keep my eye on the goal as much as I can.
The goal for me is to share the stories in my head. So I have to figure out how to do that, with all of my personal challenges.
The thing is, those challenges are no different from the challenges that people who have day jobs face or people who have toddlers or people who have sick parents. We all have things that get in the way of our writing.
We just have to figure out our priorities and figure out where the writing falls in the scheme of our lives.
That’s so easy to write, and so hard to do.
And now, I’m signing off, because I still have 6266 steps to achieve before midnight—and this is not a running day.
Those of you who get the blog posts early on Patreon will notice a pile up of blogs in the next week or two. I have a workshop coming up, and I’m planning ahead—managing my time. I will have a migraine when the workshop ends, and the migraine will fall on my usual blog writing day. So I’m planning for that, plus the lost time that I will spend in the workshop itself.
Managing, managing, managing.
It’s kinda fun to write a lot of blogs at once.
You’ve helped with that, by giving me suggestions and helping me focus on what to write. Thank you! And thank you for the comments, forwards, links, and shares. Much appreciated.
I set up a Patreon account late last year because so many of you asked for it. You wanted to support the blog, but not on PayPal. So, if you want to support the blog on a regular basis, use Patreon. If you want to contribute to this post only, the PayPal donate button remains on the site. If you go that route, please include your email address in the notes section, so I can say thank you.
Back when I was having the worst of the health problems, that constant dripping deadline of the blog got me to the computer when nothing else would. Thank you all for that, and for reading this week in and week out.
Thanks so much!
Click paypal.me/kristinekathrynrusch to go to PayPal.
“Business Musings: Writing With Chronic Health Problems,” copyright © 2017 by Kristine Kathryn Rusch. Image at the top of the blog copyright © 2017 Can Stock Photo / prometeus
Thank you so much for your honesty in this post. I have depression and fybromyalgia, and I hate that certain days I have to take off from writing. I do feel like a slacker. But your words just rang true. I should rather focus on those good days and work hard when I have one. It’s just comforting to know that you and your husband have chronic illnesses, but yet you remain to be professional writers. Both of you are very inspiring. Thank you for all you do for the writing community.
[…] Kathryn Rusch wrote a post about writing with chronic health problems. It’s worth checking […]
[…] Kathryn Rusch, a writer I greatly admire, recently shared a great post about writing with chronic health issues. I do have a couple of low-grade chronic health issues, but the article has advice that can also […]
[…] Kristine Kathryn Rusch muses on writing with chronic health problems. […]
I think it’s great you run!
I don’t think I knew about your bicycling century. I’ve only done a half century and biking has been one of my favorite forms of exercise in the last 5 years.
My absolute favorite exercise is the Bowflex. I bought my first machine in 1999. Before then I had never been athletic. I felt weak which was more of a problem of self-esteem. I hit my stride with that machine in 2002 and have been consistent with three times a week since then. There have been short weeks and missed weeks but never for long.
It’s now an engrained habit. I bought a new Bowflex three years ago (newer models are not as apartment friendly) and I enjoy the muscle building aspect and love taking that exercise into later adulthood.
Biking gives me cardio and I do enjoy it. Commuting to work helps but I still need to increase the mileage.
I thought I’d chime in about my favorite form of exercise. (And catching up on reading blog entries post anthology workshop.)
You wrote my life. How DID you do that? Thanks from the heart because not much comes out of my head. Tumors in skull. Migraines 25 / month. No more details required. Thank you again.
Thank you for writing this blog. Those words don’t even describe how grateful I am. I’m about to send it to my husband who will say ‘I told you so.’ Regarding – Rest, give yourself a break. I have migraines – not nearly as severely as you have had – and Generalized Anxiety Disorder which worsened considerably during peri-menopause. Being a therapist, just made me angry that I couldn’t just figure it out. Now I’m writing full time because, well, I need a break and to become the writer I’ve always wanted to be I needed to write full time for awhile. I love being a therapist, but I had to prioritize to work on my lifelong desire. Thank you again.
[…] https://kriswrites.com/2017/03/01/business-musings-writing-with-chronic-health-problems/ Managing things with health problems. I take things in short stretches like she suggests though I need to admittedly, exercise. I keep meaning to but the weather sometimes deters me. […]
I have 3 chronic health issues to keep track of. One isn’t too painful, but it’s in my eye and the risk is losing sight in that eye, so it’s just as vital to manage as the other two. The other two are pain related and I have figured out triggers and what to do to lessen the pain. That still leaves me very tired a lot of the time. I have a day job and no matter how many hours I work, 4, 6, or 8, when I get home, I nap because I’m exhausted. Eventually, I figured out that I need to take advantage of the time I have where I’m not tired. I can’t let myself procrastinate in those moments because later I might not have the energy. It is very frustrating, but figuring that out has been really helpful.
I’m saying all this because it’s great to read your post and know I’m not alone in trying to get everything done with a body that seems to hate me.
Another nutritional tip that I have found really helps with migraines. A natural medicine doctor recently told me that he has had over 30 patients who stopped having migraines after eating a tablespoon of raw honey every day. It has to be completely raw, and local honey is preferable. The frequency of my headaches has dropped over 90% since I started following his suggestion.
[…] Link to the rest at Kristine Kathryn Rusch […]
[…] (ça n’existe pas!!) je vous recommande chaudement de prendre 10 minutes pour lire cet article de Kristine Katrhyn Rusch (KKR), une auteure de SF prolifique qui souffre d’allergies et de […]
Thank you for sharing this post. As someone who has only in the last 6 months come to accept that wow, chronic health issues are a part of my life now, this is well-timed to start managing it.
I always took that approach to my supplements, the way I’ll take it is the best way. I don’t do shakes after trying to for years because they don’t fit into my routine, and as someone who has ASD, routine is everything for me. Exercise consists of lots of walking because I’ve always walked and paced (sometimes for hours) but find anything more strenuous almost impossible to get a routine going on.
Now, it’s just finding a higher priority slot for the writing. I’ve always put family, chores, household, finances, necessary “busywork” stuff and dayjob first, which to an extent is reasonable, but I’m finding many days, there’s nothing left when I hit the end. My energy’s just gone, and I miss writing, so I need to put it sooner when I’m still feeling up to anything.
Just again, thank you for sharing this.
I’m convinced that the most useful ability one can have is the ability to adapt. I’ve been disabled since birth and live in a world which is (understandably) designed for the convenience and comfort of the majority. Adapting in my case is pretty much a given, if I want to function. Thanks for writing this.
Fantastic post and great insights. Thanks for doing this.
You make me not feel as bad when I can’t work because of my own problems. I really appreciate how open you are about it too. It’s nice to see all that you (and even Dean) can accomplish, despite all of that. Also reading all the previous comments too!
My mom suffered from migraines so I know there is a good chance I could get those bad ones which leave me debilitated in bed. I push through the majority of my own problems because I have my own level system and try to work to tailor to those needs. That helps me loads. For me the best thing has been a steady schedule for my sleep (as much as I can), limiting any “digital” time to a certain amount per day or I get severe dizziness, and now I’m trying to get back to yoga. My joints no longer enjoy walking and running on the treadmill unless I wanna be WIPED out later in the day, and I have a new Doberman pup who is making the yoga routine not come back as quick, but like you said, we each find our own methods. I find that through doing that and listening to my body (as you have it seems) I am WAY more productive. On the days I’m not? I don’t blame myself or beat myself up, which I think is also a huge help. I’ve been noticing a lot of writers seem to have to work through a lot behind-the-scenes. It’s just admittedly nice to read I’m not the only one as we can sometimes feel that way.
Hi Kris, my migraines are usually not accompanied by pain, sometimes they are. Mine are the ocular kind where I suddenly have a blind spot in the center of my field of vision, kind of like the after effects of looking into a camera flash. But what follows is scary because I suddenly have a flickering, ring of light slowly creep through my field of vision.
Last year they became so frequent I was off to all kinds of tests and my last doctor, a neurologist, told me no one knows what causes them. So? Is that it? Keep a journal, he said, of what you ate or drink before it happened. I share your pain, Kris. Hang in there!
“The best exercise for you is the one you’ll actually do. The one you look forward to. The one you enjoy. ”
I’ve been telling people exactly this in my clinical practise for years. I’ve got plenty of reasons why I don’t love running as an exercise choice, but if someone is doing it, enjoying it, and not injuring themselves while they’re at it, then they should keep doing it.
I’m glad to see the reality of working with chronic medical conditions discussed so frankly. Not only is it a help to others in a similar position, but it also helps to shift general perceptions around people with chronic illness.
It’s costly in many ways of managing the physical and emotional challenges of multiple allergies, Crohn’s, chronic fatigue, fibromyalgia, MS, rheumatoid arthritis, depression, and any combination of the above. But what doesn’t get talked about much is what it costs that person — sick and probably treading water like hell just to keep their head above water — to interface with people who don’t get it.
A lot of people who have never been that sick themselves think that, really, no one could be that sick, that exhausted, in that much pain all the time. Or that someone could have a good day and be non-functional the next. It’s exhausting to be constantly educating everyone all the time, and most chronically ill don’t have the bandwidth or desire to do it.
So I’m really glad to see the reality of this kind of health issue being addressed here, in a non-medical blog, where a lot of people who don’t have chronic health issues will read it.
Yes, me too! Migraines every week! So bad, I could not see, so no reading, no anything, but sleep. Many triggers such as bright or flickering lights, stopped breathing with cloying perfumes , lack of sleep, etc.
Through trial and error, I have no additives or preservatives in any food. This means make my own bread, ice cream, biscuits, cakes, pasta, etc every week or when required, and I use chemical free meat and veg for all meals. And I must have 6 – 8 hours sleep every night, and naps if needed during the day.
Got the pain down to once or twice a month, then years later, once or twice a year. The very few migraines I now get a year are manageable, thankfully, with sleep, and for the extremely painful ones I have prescribed pain killers that put me to sleep.
Hope your migraines ease or disappear soon.
Excellent post and excellent timing. 😀 … consistency is my bête noire, but it, and I, are a work in progress. 🙂
The person obviously doesn’t know that you are an ageless pixie who will keep going like the Energizer Bunny long after we are all stove up and unable to move.
And we love you for it!
Oh, dear heavens. I have chronic migraine, too. (I always have a headache. I can recall perhaps three headache-free days in the last decade. Two were directly after hospital treatment.) I’ve been regularly encouraged by your comments about chronic illness. (If Kris Rusch can write as much as she does with a chronic illness, I can finish the next novel, darn it.) Knowing that you have what I have makes it even more helpful.
Right now, for financial reasons, managing my health comes first, the day job comes second, and writing comes third. If I don’t manage my health, I’ll lose the rest of the week to the overwhelming pain. I’m the main breadwinner in the house, I love my work, and it’s the day job that’s bringing in the cash right now (I’m still a baby writer), so work is a priority. Writing? I eventually want to shift to full-time writing, so I write every day it’s at all possible, even if all I can manage is a few lines. Mornings are usually my worst times, and right after meals are generally my best, so I write immediately after supper.
I average two days a week where I can’t talk, can’t read, can’t drive. Some of my triggers are things I can manage (chocolate, oranges, irregular mealtimes, exercise, light); some aren’t (weather changes, scents, noise), but I’m developing strategies. I’m still looking for a form of exercise that I can do regularly – I go for walks when I can, but even an hour’s walk can trigger a two-day migraine. (If I have to run, in twenty meters my vision will be fading out and my balance will be going as a headache slams in.) There has to be something I can do, though. For now, I stretch, and I keep walking, and I accept that I’ll lose weekends to the pain as a result. I grocery shop when I must, and I know that will probably put me down for the day. (Even my sunglasses aren’t enough to keep the grocery store lights at bay, and it’s a loud, echoing place with many smells.) I simply don’t plan for anything after that trip, and, when possible, my husband does the shopping.
Thank you so much for sharing; it really does help to know that other people can and do cope with chronic illness. So many people tell me to give up, stay home, stop trying. They think I should wait until I get better, and then resume my life. Forget that. What if I don’t ‘get better’? Should I waste my entire life waiting in the dark? It’s far better to accept my current situation and work within it.
Thank you so much, Kris! It’s encouraging to hear someone else dealing with health issues. I also struggle with migraines, though not with the same frequency / extent. For me, they come with dizziness / vertigo / motion sensitivity, so I can’t exercise them away … and usually sound sensitivity, so I have to throw harp practice out the window, too. (The vibration of the strings actually makes nauseous.) I’m a workaholic, so the acceptance has really been the big part: to be forgiving and gentle with myself and know that I’m not slacking off when I take a health break. I know (or should know) that I have enough discipline that I’m stepping away for the right reasons.
I’m so impressed with how you manage your condition. I have to admit that I find it very hard, but try to stick to a routine of sorts. However, I have secondary progressive multiple sclerosis and have been in a wheelchair for around three years. Exercise is extremely difficult but I can be strict about diet. Some days the pain, spasm, un-cooperatve limbs, and brain fog make writing a struggle. Other days, the writing is a distraction – even if my maximum word count is at the most 2,000. I just hope that my hand co-ordination and mental faculties last long enough to get a few books released.
Kristine, I read your columns regularly and truly appreciate all the hard-earned wisdom you share. I have to tell you, today’s column was too long for me – I have a million things to read, a job to do, and my own writing to attend to. But the brief bits you threw in about your relationship with Dean were written with such love that I finished feeling like I’d read one of your romances.
I’ve also struggled with chronic migraines and creativity. I’m still working on it 🙂
I’m astounded that you manage so much so well, Kris! Honestly, that’s friggin’ amazing.
I have both physical and mental health issues to deal with in my daily life. They are mostly better now, though, due to a combination of medication, regular exercise and (mostly) healthy eating. For years, I didn’t write because of the mental and physical health issues. Also, I was an English major in college so I carried much of that attendant baggage around for a couple decades. That, too, kept me from writing.
Oddly, the thing that made me take up daily writing was the (surprise) birth of my son. I started taking better care of myself so that I could be a better mother, eschewing sugar and the bad carbohydrates that made me act a fool and exercising regularly to help with rheumatoid arthritis. I developed a somewhat rigid routine (a good thing if you’re a Mom), something I’d never been able to accomplish before, and that helps with my severe ADHD. But the thing that probably helps me the most is my daily writing habit. I just flat-out feel better if I have at least an hour to write most days. There is a marked difference if I have to skip a day.
I guess the point I’m trying to make is that it is sometimes the thing that a person least expects that will make all the difference. The birth of my son did not make me so tired or overwhelmed that I had to give up writing (a fear I’d carried around for years even though I wasn’t writing so why the fear? I made no sense back then). Being a Mom finally got my ass in gear!
I honestly didn’t know that I was capable of doing even this much. It seems like a lot to me. In the years to come, I look forward to discovering all the other things I don’t yet know that I can do.
I think we all have our “issues” to deal with. I have minor health ones that can be dealt with through diet and exercise. That can be hard to implement when there is family. My biggest obstacle I have to deal with is mental. My focussing is awful and staying on task can be difficult. I’ve always sort have been that way though. Now I think it is worse with menopause which has given me more issues to deal with. But now that I have started writing, I’m very aware of my lack of focus and my start to the new year was shaky. I let some distractions into my life that I had no control over and it took me a while to get over that. I’m doing better now and February was definitely an improvement over January. I’m writing just over 2000 words a day now plus editing on other projects that are already written. My goal is to have that back list out by mid June before my boys graduate high school. It’s not a deadline but a goal. Goals are more acceptable to me than deadlines. If I fail, I will work around it and keep going till all the edits are done. That’s all I can do and I know that but I will try very hard to meet that goal.
We have to learn what our limitations are and work around them and like you say accept them. You only live once and regret is not something I want to hold me back. Live life with what you love to do.
I used to have the same migraine problem—although I’d also have “silent” ones, where you have the effects but not the pain, and pretty much always light sensitivity—then figured out it was bile processing issues. (Used a beet supplement with my meals and was migraine-free in about 2 weeks. Now I add beet powder to foods that can trigger bile reflux, and I just get them when my curved spine gets my vertebra pinched up.)
And YES key to management being acceptance. Lack of acceptance of limitations is really THE worst thing you can do, because you keep forcing yourself to do things you really can’t or shouldn’t. Trying to be creative about your limitations is asking for trouble. So is focusing on the limitation rather than the goal.
thank you for this post.
I struggle with the hidden health problem of depression and I’m very introverted. After 8 hours at the EDJ dealing with people I come home and am just relieved I survived. It’s hard to then get to the writing table to get out the words because I just want to reward myself for surviving the day. Even though the reward should be writing, it’s easier to reward myself watching or reading other people’s stories. (I have killed cable tv and all the tv subscription services but i still find a way to waste my evening.)
I also feel so much reward and happiness after a writing session. So that I can’t sleep because I feel so excited about all the wonderful things that will happen because I’m finally writing. (which leads to the pressure on myself to write perfectly instead of just write.)
I have trouble setting realistic expectations for myself. I know I can’t write 5K in a day right now (or even 2k) but yet I jump ahead to all the books I could have written if I did and so for the millionth time I set my goals on reaching some ‘impossible-for-me’ word count goal each day.
My sister told me this trick yesterday that – while on the drive home – dump your work cares at a certain location or house (sorry, random house for the bad karma!). 🙂 From that time forward, you’re free of that care until the next day.
I know the advice is always ‘just do it- apply butt to seat.’ Set realistic goals. Find ways to set a daily routine.
Right now I’m trying to come home, cook (because it just makes me so happy and I’m hungry), then write. but still trying to work on getting the writing to feel like it’s own special, low-pressure thing. (I spend all day at work wishing I could be writing. then I get home just wanting to crash.)
I know each day is a new day. And life is a work in progress.
Consuming stories is part of the job, gabby. So let yourself do that at times. It’ll refresh and you’ll do so much better later. 🙂
Life. That’s what it is. I like the old Jewish saying, “Man plans. God laughs.” But both you and Dean are inspiring with what you accomplishment, despite the challenges. I agree with you on exercise–the most important thing is finding what you like and sticking with it, no matter what it is. There’s no one perfect exercise for everybody. We’re all different and doing any exercise regularly is vital. I’ve been running for a long time and I’m in my sixties and have never been injured running. I have no problems with my knees and don’t think, if you do it properly, that running has to lead to bad knees or any other injury. I do recommend yoga though as you get older–helps tremendously with the joints and flexibility and balance.
A very timely topic. I’m starting Week 2 of “The Boot.” I broke my foot at the tail end of a cruise when my ankle turned on a wheelchair speed bump, then impacted with the same bump. After the doctor told me it was broken, I specifically asked about exercise because I didn’t want to stop completely–and didn’t think I needed to.
I don’t do running, and in fact, it’s damaging to me because I have poorly constructed feet (hereditary; everyone on my father’s side has them). When I run, my foot comes down flat, rolls in, and then drops. That’s what caused the problem with the ankle that led to me breaking my foot. But I knew it wasn’t going to be good for me to stop altogether. He said not to do any lower body, so I’ve been doing trimnastics from a chair.
And I’ve struggled with energy. Think it’s a combination of me not being as active as I usually am, the crutches, and the foot healing. I’m teleworking for work and definitely much slower there and trying to grab bits of writing here and there. It’s what it is, and taking care of me is more important.
I love cycling, but as you say falls are inevitable. Not so bad when you’re young, but not so good when you’re older. For me it was being hit by a Mercedes Benz salon in 2008 that ended my my cycling career (as in cycle to work and fun on a regular basis kind of career). Just over a year ago I took up archery, which is now my go to exercise. It may not sound like much, but I shoot at 80yards and after six arrows have to walk down the range to collect my arrows and walk back. Do that a dozen times and add in the walk tot he field and it all adds up.
Living with illness is all about acceptance and commitment to doing what needs to be done rather than what you want to do.
I need to get my walking-treadmill set up with a proper desk. The current kludge has too much extension of my arms, and while I could write that way… It screws up my fitbit! I rest my wrists on the laptop to type, and that means the fitbit can’t register that I’m getting any steps unless I use the large strap (which is now busted) and wrap it ’round my ankle! Which worked, but the large strap broke…
I don’t know what my applewatch thinks about if I rest my wrists… I’m mostly filling my Exercise ring on that every day now. (And Fitbit tells me how I’m sleeping, so I know I’m not “just lazy” when I wake up and want to keep keeling over. No, I really did get only X hours of sleep, says the Fitbit, and I think it’s optimistic.)
Thanks so much for your honesty and for your tips. It occurred to me as I read that I need to revisit my situation because my challenges have changed recently yet I haven’t acknowledged or made allowances for that. Instead I’ve been holding myself accountable in a way that isn’t quite working and getting upset when I fall short. It’s time for a rethink. Thanks for the timely blog!