Autoimmune filter: How do you flare-proof your life?
September 23, 2018 6:47 AM   Subscribe

I am glued to the bed after sleeping ten hours. In five hours I will take over as the solo toddler parent and I have negative spoons. If you struggle with autoimmune flares, especially the fatigue, how do you flare-proof your life?

I am mindful of diet, stress, alcohol, and overexertion as these tend to be the main triggers. But sometimes whatever I do on a Saturday tends to rob my Sunday of functionality even trying to keep things in check. I have to get a handle on this. In a couple of months I am trying to solo travel with the toddler, and need to be able to prevent flares or the trip will become a real problem.

Also, my rheumatologist isn't very good at treatment of ancillary symptoms. I have Prednisone that I can take during flares but that's so problematic for future me. Have you found anything to help during the fatigue? I have heard some get Adderall prescribed? Do you get that from your specialist or GP? (YANAD/TINMA)
posted by crunchy potato to Health & Fitness (3 answers total) 10 users marked this as a favorite
Man, if there were a foolproof way to prevent flares, autoimmune issues wouldn't be problems. I do what I can, but none of them work consistently or bring me back to "normal" (or "solo-traveling with a toddler", frankly.)

- Prednisone, yes. If I have a trip coming that I know will be strenuous, I start a course a couple days before I leave, so the worst of the mood symptoms have leveled out (I get rage rather than euphoria, but it is only really bad for the first couple days.) I'll continue the course until a couple days after I get home, if that's possible at all. Talk to your doctor about this, though - I have long been managing my own prednisone dosage but that's not usual.

- Caffeine is my #1 method of managing fatigue. It works, some. In this case, with a planned trip, I'd probably try to taper down entirely before it and start up again during so I get the strongest effect. I have never heard of Adderall being prescribed for autoimmune fatigue, and I honestly would hesitate to ask my doctor about it - it can be a drug of abuse and the last thing I want is that little note in my file.

- Diet during travel is something I have to very carefully manage. Gluten, for me, triggers flares and it's hard to 100% avoid when eating out a lot. I sometimes manage this by making sure I have a hotel room with a fridge and microwave and do some grocery-store shopping for products I know don't cause reactions. (Some trips this is more possible than others.)

- Prioritize sleep. Don't stay out late if you can avoid it, if you need a sleep aid, don't forget it, do your best to get your normal amount of sleep with the least possible jet lag. Manage your caffeine/stimulant timing carefully. Don't schedule the trip like you can just bounce back from a time change, if there is one, because that way lies Flare City.

I travel a lot less than I used to, which, as suggested by my handle, was a LOT. It's hard, and it sucks, and the hardest and suckiest part is having to remember every goddamn minute that you have to be taking your condition into account. Good luck.
posted by restless_nomad at 7:17 AM on September 23, 2018 [7 favorites]

Low dose naltrexone has been a life saver. Ask about it!
posted by fshgrl at 10:37 AM on September 23, 2018 [2 favorites]

but sometimes whatever I do on a Saturday tends to rob my Sunday of functionality even trying to keep things in check

Lord, I hear you - I'm actually at home on a Monday because I was wiped out yesterday and am still feeling funny. My autoimmune disease is digestive (colitis), but the triggers are very similar. One thing that's helped me is to try and slow down a lot more on Saturdays. Sometimes, I get a sense of rushing through so I can "Relax" on Sunday - but this can often lead to a flare up.

The other big thing for me, and maybe you're way better at this than I am - is accepting a flare up and just really prioritising myself. Yesterday, I should have spent in bed, and watching tv. Not slowly, painfully doing two huge loads of washing and cooking all the meals for the week ("but I did take it easy!", my inner voice says, "I didn't change the water in the fish tank and fold those clothes!" Not. Good. Enough). Even when you have a toddler (and I do know, until recently I had two of em), you just have to ease up and figure that giving them the tablet for half a day an having toasted cheese sandwiches for dinner every now and then won't kill em.

I've never had a good medicine to deal with the fatigue. I just kinda stagger through the day and go to bed when the kids do. One thing that's surprised me is how even when I'm exhausted, I can actually do stuff, it's just way slower and crappier than usual.

Best of luck, I really feel you.
posted by smoke at 5:25 PM on September 23, 2018 [2 favorites]

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