From Kristine Kathryn Rusch:
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.
. . . .
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.
. . . .
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.)
. . . .
I came up with a list.
I needed to:
Write Every Day
Exercise Every Day
Manage My Food Intake
Get Enough Sleep
Read something
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.
Link to the rest at Kristine Kathryn Rusch
Here’s a link to Kris Rusch’s books. If you like the thoughts Kris shares, you can show your appreciation by checking out her books.
Migraines *shudder*. I’d wind up locked in a dark room with a towel over my face, schreeching at anyone to touched me wrong or forced me to move my head. If I didn’t take a Tylenol or Aleve right after waking up, I wouldn’t last till noon. WITH a NSAID, I might last till 3pm. I timed exercise and all the things I really WANTED or NEEDED to do to coincide with my pain-free hours. After that, I was lucky to be able to make dinner or drive. Lights and smells (still)could set them off early or make them worse (Bless the rules that say no perfumes in a clinic. Bless the people who obey those rules even more. And down to the depths with people who ignore them). I’d end my days half bent over, eyes squinted shut, panting against nausea and praying I’d make it home safe. When I was on the boats it was worse. I loved cloudy rainy days. Sunny days just kicked things into overdrive faster. I remember one day, hurting so much I was clinging to a post to keep myself upright, and the Captain told me I’d missed a chunk of work. I might have thrown all my coworkers off the boat (not literally), I might not have. It’s all kind of lost in a haze of agony, even now.
When I finally went to a doctor about it, I’d been having migraines since the time I was 14. I still get them occasionally, and I supplement the verapamil with tylenol in the mornings and am usually good. Sumatriptan will kill them, but it knocks me out of productivity just as easy as the headache does while it’s kicking in.
And lets not go into the hand issues…*shudder*
R Coots and Patricia Sierra, Glad you found the ways through and the means to help prevent, as each person is unique. The nausea. Almost worse than the pain. I am glad you are better, and Patricia, for your daughter too, I say a little prayer that she feel better soon.
My daughter gets migraines … in fact, has one right now. I used to get an odd kind of migraine: in my carotid artery. Very painful. It took a long time to get a diagnosis because it did not present as a headache. I was put on a daily pill that prevents migraines. I don’t recall what it was called. I took it for about a year or so, then quit and was not bothered again until fairly recently when I had two rather mild (comparatively) carotid migraines. Once I had a visual migraine. I went directly to the ER because I thought my vision was totally messed up. The ER doc sent me from there to a retina specialist who told me it was just a painless migraine. I was seeing zig-zag lights flashing like lightening.
Like others here, I’m allergic to fragrances. My most troublesome allergy is to hand sanitizer (it’s the fragrance that’s released as people are rubbing the lotion into their hands). It sets off my asthma. It can be pretty hard to avoid when I’m out and about in the world.
For people with an autoimmune/allergy issue that’s ruining their life, try a diet change. It doesn’t matter what kind of autoimmune problem. Be it sneezing, lupus, crones, chronic fatigue, etc…a diet change can maybe help. If you haven’t tried it, you should, immediately. It’s been magic for a lot of people I know.
I had chronic breathing infections and joint problems, on tons of steroids and antibiotics, I was getting close to death.
Then I switched my diet up radically on the advice of a friend. I’m not cured, but I’m not on death’s door anymore either. I am healthy enough to work part time, work from home, go for a walk, etc…
You can see if you have a food problem by doing a food challenge. The tests doctors give you are inaccurate. You do a food challenge by cutting out all common allergy foods. If you feel better, well, something on the list was hurting you. Add foods back in one by one to see which one was screwing you up.
These are the top 10 foods I cut out for a week. Remember, if you feel better you don’t have to keep them all cut out, it just means 1 or more of them are hurting you and you need to cut those things only. You figure out which one is hurting you by slowly adding things back in. Some things will be obvious. Like strawberries. Most people don’t eat them frequently enough for it to be a problem. Peanuts as well, usually peanuts cause aniphylaxis if anything.
1. Eggs.
2. Dairy (milk, cheese, ice cream, milk chocolate, etc…)
3. Fish
4. Shellfish
5. Wheat
6. Nuts and legumes
7. Tree Nuts
8. Soy
9. Strawberries
10. Corn
*You might cut rice and potatoes as well. I ended up having a problem with them.
For me it was grains (corn, potatoes, wheat and rice) and dairy that were setting me off. I’m still not 100%, but my life is radically improved.
If you are confused about what to eat after cutting all of that out. Meat and vegetables and fruit.
EDIT: Please note that food allergies aren’t exactly why I was sick. I was sick because my body is dumb and attacks itself. The food change helped mitigate the symptoms, the food was probably not the root cause of the symptoms. I think law school stress and being born very premature were the root causes. The food change is a treatment plan, not a diagnosis.
AIP is a great diet for learning what our food triggers are.
For me, being too cold and overexercising or not exercising at all are triggers also.
very valuable Jo. Thank you, and I deeply agree with diet changes. Here, no gluten helps enormously, body no longer aches, and of course the usual culprits as P.D. Singer named above, its not the food exactly, its the processing of the food it seems for me, fermentation, smoking, pickling, other preservation processes, including pectin for me. All of which we grew up on in our yearly autumn weeks of canning kitchen preparing hoards of food for winter by preservation, salting, drying, glass jar canning of all fruits and vegetables, smoke house, barrelling, included.
No wonder.
Also Jo, body is injured in some way, not dumb. Just my .02. Body isnt able to survive certain additives. I am amazed in my life that I can have strong guns and traps and still have somewhat fragile aspects. But I sense it is some combo of genetic predisposition, and actual injury from toxic exposure while cells still growing while growing up.
It’s been two years of struggling for me after developing an autoimmune disease and the added problems it brings. I’ve been lucky when I can focus enough to write. I want to write, but my priorities have had to change to manage the illness before anything else. On the good days, I often spend so much time catching up on what I couldn’t do on the bad days that I get hardly any writing in.
But I do write when I can. I want to write. I need that normalcy, along with my horse. Those are the big things that get me through the hard days of living with my chronic illness. It turned my life upside down, but I am learning to cope and keep going, especially when the illness seems to be winning.
may you do/find all you can, for as much as you can Melanie, for health and for writing. Beautiful loyal Horse is medicine too. I can tell you know.
Horse therapy. It’s gaining in popularity.
Yeah it can be very hard when you have a good day to figure out priorities.
I have days where all I get done is a small amount of reading.
I’m doing better though, the last month or so. Finally getting back into a regular routine.
Thank you, USAF and Jo.
My horses have always been my therapists. My little guy now is exactly what I needed to slow down but still enjoy myself.
Jo, I’m sorry you have those days too, but it’s always nice to know that people understand what it’s like. I’m glad you’re getting back to a regular routine. I hope things continue to improve and stay good for you. I know the bad days really teach us to appreciate every little positive we get.
thanks Kris, and for your list which is excellent. Ergotamine got me through some, that bitter tasting sub lingual thing… also filling tub and getting on back under hot-hot water with only nose sticking out, would often ward off; something for sure about opening the capillaries and veins so blood not be trapped.
Taking scrupulous care of teeth, as eye teeth roots can reach to the sinuses. And staying away from, dont ask me why, herring, smoked foods, corn, wheat, wine, alcohol. Caffeine actually helps, just a cup a day.
With you, soaps,perfumes, hair shampoo, the cleaning aisle in the grocery store, lumber dust at hardware, any VARNISH smell, any even mild mildew, mold, tarnish. More. I always thought it was because we worked with such harsh chemicals on the farm when I was a child; lye, turpentine, ammonia, bleach, petrol bases.
I felt like it broke the immune system in the young, as I understand ‘allergies’ which ‘sounds’ so benign, are an autoimmune issue wherein the system that normally defends, cannot.
Migraines and deep lung infections were the cycles of despond til figured out what and who to stay away from. People who reek because maybe they cant smell their own perfume dowsing, are painful.
If anyone else deals with migraines, you have my sympathy and support. It used to knock out days by being unable to stand without nausea and piercing eye pain. If you havent investigated yet, definitely recommend Kris’s protocol.
Agree with Kris, exercise/moving, also. Although in the throes the vertigo was profound. My hunch is again, moving with some rigor helps to put space between the bones and vertabrae, and opens the veins with blood pumping harder.
There is only one thing that still brings on a migraine that I cant control; it is a certain barometer drop and when the sun is slightly green and clouded. It is painful to look at the light on those days, and I suspect, the barometer pressure outwardly, somehow affects some of the venous system too. At least in some whose immune system works,but not perhaps the way it could have without early toxic exposure, in my case and that of all the young of our family handling such harsh fluids and substances.
Thanks Kris. Always wishing you well.
USAF, a lot of your trigger foods are high in tyramine, a known migraine trigger, though not for all sufferers. Basically, foods that are pickled, fermented, or smoked are likely to contain high levels of tyramine. It can also play with your blood pressure, which will cause headaches at high enough readings.
thank you P.D. Singer for the info and a name for the chemical tyramine. Now it makes sense about herring, certain dairy etc. You helped. Thankyou.