Everyone has different experiences with Dys and the following advice is based on mine (please don’t hesitate to add to, question, or contradict any of this in the comments!), but I hope this is useful for some people. Without further ado, some Dysautonomia advice for the newly diagnosed:
1) Educate yourself about Dysautonomia, POTS, and/or whatever else you’ve been diagnosed with. You don’t have to know the intricate details of how your body is functioning, but people are going to ask you about it, so it’s good to know the basics. (I usually tell people that Dysautonomia is a malfunction of the autonomic nervous system, which controls involuntary functions. They don’t know what that means, but it sounds like I do.) Additionally, know the names of the meds you’re on and the dosages. If this is an impossible task (I have been known to write messily on forms to cover up such forgetfulness), have it written down somewhere and bring the list when you see a doctor.
2) If you’re in school, get yourself some accommodations. If you’re K-12, this will be a 504 plan. Depending on your symptoms, you might need to arrange for home-hospital (if your school system does this). There are a whole host of accommodations that Dys kids require, but here are some of the more common ones: extended time, flexibility with deadlines, ability to eat/drink in class, permission to take breaks as needed.
3) Carry a water bottle everywhere. Do you have a reusable water bottle? Fantastic, meet your new best friend. For taking meds and keeping yourself hydrated, you never want to be without a water bottle. I have various sizes to fit in various bags (and various bags to accommodate the size of water bottle I want to bring. It’s a whole system.)
4) Get compression stockings. Yeah, they’re a pain in the ass to put on, but they help with blood pooling and will make you more energetic/less prone to passing out. You can usually get prescriptions for medical stockings, like Jobst, which insurance will cover. I also like Spanx for shorts wearing/warmer weather. Make sure to get some that cover your stomach, which is prime territory for blood pooling.
5) See a physical therapist who knows how to help Dys patients. In addition to the deconditioning that you want to counteract, your nerves are likely all kinds of tight and doing PT will help loosen them up. Granted, not everyone has the stamina for this. If that’s the case, doing even just the tiniest bit of exercise will still help. Walk around your house a few times a day or to the end of the block and back, if you can.
6) Sleep! Also known as don’t stay up late on the internet every night. It’s super tempting to do so, especially when you can sleep in the next day, but having some semblance of a normal sleep schedule will help you feel better. If you sleep in late every day, you won’t get meds/food/water into your system until later, which will generally make your day shittier. If getting up by 9 or 10 isn’t an option, wake up around then, eat a few crackers, take your meds, and go back to sleep.
7) Attend to your emotional health. Being sick can be incredibly lonely, and sometimes it feels like they’re nothing you can do to fix that. But there are small steps you can take to boost your happiness, whether it be rewatching your favorite TV show or creating the perfect driving-to-doctor’s-appointments playlist or devising semi-elaborate pranks to pull on your family members. During bad stretches in high school, I would try to do little things that felt productive, like writing letters or knitting a scarf. Even on the worst days, I always open my blinds because natural light really does make a difference. As for friends, some will split at the first sign of trouble, but others will stick around. Ideally, they will reach out to you, but good intentioned healthy people don’t always know what they should be doing, so you may need to ask them to hang out. And finally, depression is a real factor here for a number of people, sometimes as a side effect of meds, sometimes as a result of isolation, and sometimes as a pre-existing condition that is exacerbated by the loneliness of Dys. Don’t be afraid to reach out if you need help.
8) Pay attention to what you eat, and how your body responds. Some Dys kids develop allergies along with their other symptoms. I'm gluten and dairy free, myself. It’s incredibly annoying to close-read every label, but I have more energy now that I’ve cut those foods out of my diet.
9) WRITE EVERYTHING DOWN. This is basically me yelling at myself here, because I’m so bad at doing this. But seriously. Take your BP and pulse every day, and write them down. At the end of each day on a new medication, record how you’re feeling. If you’re having trouble sleeping, keep a sleep journal. Your doctor will ask you how often you get headaches/stay up past two/what your BP was last Sunday and you think you’ll remember but you (or at least I) never, ever do. The more carefully you keep a record of how you’re feeling/what your body is doing, the better your doctors will be able to help you.
That’s it! I’m sure I’m forgetting things (let’s have a round of applause for brain fog, shall we?), but these are some basics. I know lots of people have been dealing with Dys for a while and know all of this, but new people are diagnosed every day, so I hope this is helpful for someone out there!
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