Whether you immediately think of the song from Lion King or the Boy Scout Motto, the sentiment still applies. Be Prepared!
I learned early on that being prepared for your bad days/Flares is the best gift you can give yourself. Creating a comfortable, convenient and purposeful space is key to smoothing the sharp edges off a flare day and allowing yourself to recover without extra stress. Most of these items are inexpensive, others are definitely expensive. I am not saying that you need any of these, and please don’t overextend yourself financially. These are things that work for me, personally.
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Here is what I have done…and honestly my set up has morphed into something I use daily!
- A rolling cart: I tried several versions and this one was the winner. Things I looked for were…height (I wanted to have it be slightly higher than my bed), castor wheels, deep ‘shelves’, and clip on holders. I keep everything I could need during a flare so if I am home alone I can keep the moving around to a minimum. In the side holders I keep the remote to the bed and TV, Chapstick, dry mouth spray, and Xylimelts. The top shelf has my phone & charger, hair ties and clips, a brush, pens and paper, my weekly pill case, my latest book, lotion, and water with a bendy straw. This is my most used items. So if I wake up with a crazy dry mouth (thank you Sjogren’s) I don’t even need to sit up or open my eyes- just reach out and grab the water and take a sip. The second shelf holds things like pain cream, cooling strips, Migraine meds, pain meds, tissues, wipes, fuzzy socks, crochet (or other boredom busters), snacks or sugar free hard candies, compression gloves, and squeeze balls for my hands. The lowest shelf hold odds and ends that I may need but are not a necessity. It also hold my lock box with my RX bottles. See photos below.
- Medicine Vault: This is a small, lockable box for your prescription meds. I keep the bottes in here and just fill my weekly pill case from here. I like having them locked up since we have grandchildren in the house often, but I don’t need a huge metal safe, just something to slow down curious little people.
- A variety of heating and cooling items: I have Dysautomnia (autonomic dysfunction) and one of my daily battles is with my lack of ability to control my body temperature. I can go from teeth chattering cold to drenching sweat in the blink of an eye – and the temperature of the room around me has no bearing on it at all. So, I keep things that help both warm me up and cool me down near the bed. Lightweight cooling blanket, cooling strips, cooling towel, heated eye compress (also soothing for dry eyes), Heated cordless hand massager, Sherpa blankets, sherpa socks.
- Zero Gravity Adjustable bed. This is a big-ticket item. We finally broke down and purchased one last year. I love it. It was worth every penny. Ours also vibrates, which is fantastic for a sore body…and also for short-circuiting nerves. I find the vibration distrupts a good bit of my nerve pain, at least temporarily. It seems to disperse the pain a bit and make it less intense.
- CPAP – holder: I have to use a Cpap due to having episodes of Hypopnea while I sleep. This was frustrating due to getting ‘caught’ in the hoses. I blame the fact that pain and temperature control issues makes me move a LOT during the night. This was a game changer. It keeps my hoses up and out of the way and keeps me from pulling my machine off my nightstand.
Lastly, items like comfy PJs, adult coloring books or puzzles, headphones,or bone conduction earphones, or earbuds (preferable ones you can lay down and use), a journal, or whatever you find comforting.
