Hacks around working with random chronic pain?
November 7, 2015 9:33 PM Subscribe
I'd like to take on more work and I have the opportunity this month to shape how my work schedule could be structured and set some boundaries to stay healthy while I do this job as I have just gotten my severe migraines under control. I am looking for experienced advice from other people working around flare-ups of chronic conditions.
My part-time work hours at my main office could be semi-flexible, but I have to meet volunteers and donors in the evening and weekends, and there is a lot of time just spent talking to people, reading and delegating and following-up. It's a job I love, and I want to do it, but not if it's going to make me sick. I also freelance edit which I love and want to do more, which is 90% solitary and in front of a computer screen, but requires brain power.
I had bad migraines which have gone from 3-5 days severe a week to 1 severe multi-day migraine a month with 1-2 weekly moderate migraines that usually I can sleep off and treat with just Panadine. I've gone from being able to work 1-2 days a week to being able to reliably work 3-4 days a week in full, and on a migraine day, I can do routine things. The problem is that I never know what day will be a migraine day (I don't have food triggers or anything specific that has been tracked). I don't know when I wake up if I'll finish the day with everything done, or have to bow out halfway through in a haze of pain. It's the randomness that's screwing up all my planning, especially with other people involved.
Techniques, strategies and coping methods from other chronic illness mefites? Especially on how to stop myself from pushing too far on those days when I feel great because who knows when there'll be another day of good health again...
My part-time work hours at my main office could be semi-flexible, but I have to meet volunteers and donors in the evening and weekends, and there is a lot of time just spent talking to people, reading and delegating and following-up. It's a job I love, and I want to do it, but not if it's going to make me sick. I also freelance edit which I love and want to do more, which is 90% solitary and in front of a computer screen, but requires brain power.
I had bad migraines which have gone from 3-5 days severe a week to 1 severe multi-day migraine a month with 1-2 weekly moderate migraines that usually I can sleep off and treat with just Panadine. I've gone from being able to work 1-2 days a week to being able to reliably work 3-4 days a week in full, and on a migraine day, I can do routine things. The problem is that I never know what day will be a migraine day (I don't have food triggers or anything specific that has been tracked). I don't know when I wake up if I'll finish the day with everything done, or have to bow out halfway through in a haze of pain. It's the randomness that's screwing up all my planning, especially with other people involved.
Techniques, strategies and coping methods from other chronic illness mefites? Especially on how to stop myself from pushing too far on those days when I feel great because who knows when there'll be another day of good health again...
The busier you get, the more water you need. Outside eating accairs require vigilance on your part to avoid triggers. Keeping to your wellness routines is important while you adjust tonwork routines. Never forget your routines. Take water rather than a wrong snack or meal.
posted by Oyéah at 12:16 PM on November 8, 2015
posted by Oyéah at 12:16 PM on November 8, 2015
I think one part is learning to be really honest with yourself about the cost pushing too far. Another important part is making is OK to quit when you need to without undue pressure to push through.
You might be a good candidate for job sharing. The idea would be to find someone else who really just wanted to work part-time and had lots of flexibility so they could cover for you at the last minute with the understanding that you would "pay them back" later so that it would balance over the course, of say, a month. Someone who is an artists (not a performer) or a parent with a spouse who can babysit in the evening or a student might work.
Also, working evenings may make it hard to go to bed on time on those nights. Sleep is essential to spoonies - protect your bed time!
posted by metahawk at 4:00 PM on November 8, 2015
You might be a good candidate for job sharing. The idea would be to find someone else who really just wanted to work part-time and had lots of flexibility so they could cover for you at the last minute with the understanding that you would "pay them back" later so that it would balance over the course, of say, a month. Someone who is an artists (not a performer) or a parent with a spouse who can babysit in the evening or a student might work.
Also, working evenings may make it hard to go to bed on time on those nights. Sleep is essential to spoonies - protect your bed time!
posted by metahawk at 4:00 PM on November 8, 2015
It's the part where you're interacting with other people that makes this such a challenge. If there's any possible way to delegate those duties, that's where I'd start. After that, it comes down to how regular your migraines are. If they're completely irregular, you just do what you can, when you can, and cross your fingers. If there's any modicum of regularity at all, you can schedule around it.
As an example, I used to be completely unable to work for about 6 days straight, every 32 days. Three days with severe anxiety, then three days with debilitating pain. Every 32 days, without fail. So I scheduled around that. On the other hand, I have other pain conditions that are completely irregular. I don't know which might hit, when they might hit, how bad or how long, nothing. I know that certain activities are more likely to bring on a flare-up of something debilitating, so I try to not do those things.
As far as hacks go, Iv'e only got a couple to pass along. First, use a global to-do list. Dump out your brain on Sunday night (or whenever works best for you) onto a sheet of paper, or into a Notepad file, etc. Write down everything that comes to mind that needs to get done that week. Then split things up into high, medium, and low priority. Then split things up again into things that must be done by you and things you can delegate, and have someone to which to delegate. Everything you can delegate, delegate. All of it. Cooking, cleaning, filing, everything. The things left that only you can do, pick two each from high, medium, and low priority every day. Write them down. On paper. High first, then medium, then low. Do the first thing on the list. CROSS IT OFF when you're done. Then do the second thing. And cross it off. Continue until all six things are done. If you still have spoons left, you can keep working. But you don't have to. You have completed your six most important things to do list, so you are free to be done with work.
Second - write everything down. (Even notes on what 3 hacks you're going to tell a stranger about in an ask.mefi answer on how to hack working around chronic pain....) Either the pain or the pain meds will interfere with your concentration and memory every time it's important for you to remember things. I keep multiple notepads, post-it pads, notebooks, Notepad files, and lists on my tablet for various and sundry occasions.
Third - I completely disagree with the advice above to avoid schedules. Rather than avoiding schedules, have more than one schedule. Schedule A is the one where you're feeling awesome, no pain, no brain fog from pain or pain meds, you're the queen of the world, ain't nobody or nothing getting in your way today. Schedule B is where you're feeling ok, maybe some pain, or some brain fog, some things are just going to be too difficult for you to get done, be it from pain, or lack of concentration, or fatigue, but other things will be all right. Schedule C is where your ass is getting kicked, but you might could push through it to do what absolutely has to be done, by you, today. You can make that one super important phone call to your boss's boss to report on the status of the Lorem Ipsum Account, and maaaaybe send some prices to the one client you've been trying to land for months, but then you have to go back to bed. Schedule D is when you aren't working on anything beyond taking care of yourself.
Fourth - set things up so you can easily work wherever you happen to be. It's somewhat easier for me, since I live in a 90 sq ft room and don't often leave it, but no matter what the size of your space, you can still do it. Have a device wherever you might stop and sit down. I've got a desktop computer in one corner of my room, a laptop in the opposite corner, by my bed, and a tablet that travels everywhere with me. Any documents or info you may need from one device to the next, save to the cloud. If your work requires hardcopy, have pen and paper everywhere. Keep client contact info in multiple formats, in multiple locations. (I have two online listings of client info, plus 3 paper files - one of which travels with me when I'm able to leave the house to work, plus one .doc in the cloud and on my desktop.) If you can't get out of bed for the migraine, but might feel ok enough to work, have things set up so you can work from bed. If you get dizzy at the dining room table, but can still concentrate enough to work, have things set up so you can work at the dining room table.
posted by The Almighty Mommy Goddess at 6:01 PM on November 8, 2015 [2 favorites]
As an example, I used to be completely unable to work for about 6 days straight, every 32 days. Three days with severe anxiety, then three days with debilitating pain. Every 32 days, without fail. So I scheduled around that. On the other hand, I have other pain conditions that are completely irregular. I don't know which might hit, when they might hit, how bad or how long, nothing. I know that certain activities are more likely to bring on a flare-up of something debilitating, so I try to not do those things.
As far as hacks go, Iv'e only got a couple to pass along. First, use a global to-do list. Dump out your brain on Sunday night (or whenever works best for you) onto a sheet of paper, or into a Notepad file, etc. Write down everything that comes to mind that needs to get done that week. Then split things up into high, medium, and low priority. Then split things up again into things that must be done by you and things you can delegate, and have someone to which to delegate. Everything you can delegate, delegate. All of it. Cooking, cleaning, filing, everything. The things left that only you can do, pick two each from high, medium, and low priority every day. Write them down. On paper. High first, then medium, then low. Do the first thing on the list. CROSS IT OFF when you're done. Then do the second thing. And cross it off. Continue until all six things are done. If you still have spoons left, you can keep working. But you don't have to. You have completed your six most important things to do list, so you are free to be done with work.
Second - write everything down. (Even notes on what 3 hacks you're going to tell a stranger about in an ask.mefi answer on how to hack working around chronic pain....) Either the pain or the pain meds will interfere with your concentration and memory every time it's important for you to remember things. I keep multiple notepads, post-it pads, notebooks, Notepad files, and lists on my tablet for various and sundry occasions.
Third - I completely disagree with the advice above to avoid schedules. Rather than avoiding schedules, have more than one schedule. Schedule A is the one where you're feeling awesome, no pain, no brain fog from pain or pain meds, you're the queen of the world, ain't nobody or nothing getting in your way today. Schedule B is where you're feeling ok, maybe some pain, or some brain fog, some things are just going to be too difficult for you to get done, be it from pain, or lack of concentration, or fatigue, but other things will be all right. Schedule C is where your ass is getting kicked, but you might could push through it to do what absolutely has to be done, by you, today. You can make that one super important phone call to your boss's boss to report on the status of the Lorem Ipsum Account, and maaaaybe send some prices to the one client you've been trying to land for months, but then you have to go back to bed. Schedule D is when you aren't working on anything beyond taking care of yourself.
Fourth - set things up so you can easily work wherever you happen to be. It's somewhat easier for me, since I live in a 90 sq ft room and don't often leave it, but no matter what the size of your space, you can still do it. Have a device wherever you might stop and sit down. I've got a desktop computer in one corner of my room, a laptop in the opposite corner, by my bed, and a tablet that travels everywhere with me. Any documents or info you may need from one device to the next, save to the cloud. If your work requires hardcopy, have pen and paper everywhere. Keep client contact info in multiple formats, in multiple locations. (I have two online listings of client info, plus 3 paper files - one of which travels with me when I'm able to leave the house to work, plus one .doc in the cloud and on my desktop.) If you can't get out of bed for the migraine, but might feel ok enough to work, have things set up so you can work from bed. If you get dizzy at the dining room table, but can still concentrate enough to work, have things set up so you can work at the dining room table.
posted by The Almighty Mommy Goddess at 6:01 PM on November 8, 2015 [2 favorites]
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Freelancing is superior when you're dealing with issues like this due to the schedule control. It's relatively easy to schedule based on your headaches. Say you have 2 headaches a week for a total of 12 daytime hours lost. Always build this schedule slack into your weekly time budget. This means you need a six day workweek. You can budget 2 hours headache, six hours work a day 6 days a week to yield a 36 hour work week. With this scheduling method, you can work 8 hours and stop on a good day, knowing you have room to accommodate your headaches. Surplus time goes to Saturday or to a monthly bank to deal with multi-day affairs.
posted by crazycanuck at 8:28 AM on November 8, 2015