20 Things I Have To Do to Manage My Complex Health Issues
1) Non-negotiable slow mornings (waiting 10 mins before sitting up), helps regulate me, helps with morning aches and stiffness, managing blood pressure, and not rushing teaches me patience.
2) Keeping an AM/PM daily pill box (organizes pills/supplements, helps my brain not get overwhelmed, helps my hands from worsening aches and stiffness from opening pill bottles.
3) Small, frequent meals, with a snack in between (this helps digestion and dysautonomia).
4) Sitting up 30 mins- an hr after every meal helps reflux, dysmotility issues.
5) Medical-grade thigh-high compression stockings (30-40 mmHg).
6) Keeping my Spoonie cart near (emergency medical cart organized as well as my bin on my bed to the left of me, or if I’m outside, an emergency kit that comes with me, even if I switch bags).
7) Always using comfort items daily, such as stuffed animals, fidgets, noise-canceling earbuds/headphones, and a portable fan.
8) Doing practical self-care for hygienic purposes.
9) Using timers/reminders/ apps geared for chronic illness. Tracking my symptoms helps with interoception issues, alexithymia, the awareness of ADLs (activities of daily living), my needs, usage of DBT skills, and opening and closing the pain gate.
10) Drinking water with UNFLAVORED salt drops helps regulate blood pressure, improves hydration, and doesn’t trigger ARFID.
11) Having a routine and sameness in order of activities, breaks, foods, medications, and clothes (this helps me regulate my nervous system and memory with predictability).
12) Small movements daily and doing tasks sitting down help limit dizziness, malaise, subluxations, and dislocations.
13) Change positions frequently to manage chronic pain and prevent pressure sores.
14) Non-negotiable shower chair.
15) Using seated cushions and multiple pillows in the bed, reading pillow, side sleeping pillow, regular pillows, helps with chronic pain, reflux, and disc issues, and relieves pressure.
16) Dressing comfortably whilst incorporating dopamine dressing. This means wearing my favorite color every day and matching when going to places I’ll have discomfort in, like appointments. Some comfortable clothing items are orthopedic shoes, Crocs, yoga pants, palazzo pants, and oversized t-shirts.
17) Using a mobility aid like a walker or wheelchair based on distance and my symptoms.
18) Setting boundaries if I’m unable to show up in the way I want and if my health is harmed or my accommodations aren’t honored.
19) Staying in a safe space means not compromising my health for anything or anyone who won’t accommodate me.
20) Pray continuously/fervently. In the morning, afternoon, and evening. God is my lifeline, and prayer is the phone service via Bluetooth. I cannot go an hour without him; he hears my prayers and hears me when I cannot find the words to pray in a flare, shutdown/meltdown. Psalm 139:2-4 Romans 8:26.