Life with a chronic illness, especially ones that there is little medical support for, entails trying to find options, any options, that provide some sort of relief or that minimizes the pain. Thank goodness for Google, Facebook groups, and friends with similar illnesses. You all have helped me immensely along the way in this journey. So, I’m coming back to you for more!
First, though, I’ve been the lucky recipient of your knowledge; so, now I want to give back and provide you with my top 20 tips, tricks and hacks that have worked for me. I can’t take full credit though for this list – you all have helped me compile much of it.
I would love your help in adding to this list; I will happily repost this article with your additions. Simply add your tip or strategy to the blog article comments section and a note if you want to be named in the repost.
Here we go!
1. Lavender Heated Sleep Mask: The feeling of just a bit of heat over your eyes or on your forehead is magical. It lulls you to sleep and can chase away a migraine. Lavender is known to offer a calming effect that also serves as a great sleep aid. Tried and true! It really works!
2. SpaMister: Building on the lavender success theme, adding to a spa mister a few drops of lavender oil to the water can be a sleep booster at night. It’s always hard to tell if these things really work but for me, if I start it up before bed, all I know is that entering my bedroom to go to sleep, smelling that sweet lavender scent instantly sends me into a calming state.
3. Meditation: The power of meditation is often underestimated. While it can take a bit to get the hang of it, it soon can be your first go-to for getting through difficult medical procedures, moments of feeling overwhelmed or frustrated, or even simply times where you feel you need a little extra peace or calmness. It’s also great for days when you feel over-stimulated. There’s many great options, including the free version of the Calm app, general meditation DVDs, or even free online sessions.
4. Gentle Yoga: While you may not have had back pain before, spending hours in bed or on the couch can certainly bring it on. There are several gentle yoga DVD’s that can help softly stretch your muscles, while not taking too much energy. Even simply staying in a “child’s pose” for a bit can often relieve back pain a bit.
5. Lumbar Cushion: A lumbar cushion can also be quite helpful for supporting back muscles and reduce back pain when sitting.
6. Ear Plugs: Many people have told me about their sound sensitivities and for the longest time I just thought that this was one of those symptoms that I didn’t have to a large extent. However, I have more recently realized that I do it; I was simply misunderstanding and very unaware of how sound was affecting me. Recently, a friend told me that being in the rather loud restaurant we were in wasn’t good for her. When I asked her to explain it a bit more, she shared how while it doesn’t necessarily have to “hurt” to be in loud noises (though I have been in a situation where loud noises have caused an instant flare-up), it’s the over-stimulation that being in a loud place creates that can cause our bodies to deplete our energy trying to manage it. Once she said this – BINGO! I realized that I have felt extra exhausted after such events but had just never made the connection. She shared an easy solution for me – earplugs that block out peripheral noise yet still let you hear the person you are speaking with! After asking around a bit, I learned that Vibes ear plugs was the ear plug of choice.
7. Water Bottles: Hydration can be a huge help to keep some semblance of an energy level. However, the big issue I ran into with this was my lack of coordination. I was constantly knocking over my glass of water. Cleaning up mess after mess, was exhausting. Finally done, so done, with this issue, I bought a few water bottles with snap-tops that I use every day now – at home, in the car, or when at a friend’s house. No mess and because I’m carrying it everywhere, I am drinking more!
8. Heated Blanket: A heated blanket can be especially valuable for those of us that have temperature sensitivities.
9. Clothes: Temperature sensitivities come into play again here, along with comfort. Layers are a must - without them, being cold can ruin a once-in-a- great-while day out. “Restrictive” clothing is also an issue – things with tight bands can be incredibly uncomfortable. Loose clothing, without “bands” are great finds.
10. Light Therapy Lamps: I’m always a little skeptical if things really work, but I’ve been using a light therapy lamp for almost four months for about 30 minutes a day and my migraines have drastically decreased. At this point, I’m pretty convinced it’s working to some level because my usage of my migraine medication has decreased and my number and intensity of migraines has dramatically dropped (they haven’t completely disappeared but there’s a very noticeable decline). I’ve heard from many that it’s also helped them as a mood enhancer as well as for their migraines.
11. Pill Organizers: Two words for you: Brain Fog! If I didn’t have a pill organizer for all my supplements, I would be double-taking or missing my daily dosage almost every day. This helps keep me organized. And if I’m being super honest, it helps me remember what day it is.
12. Handicapped Parking Pass: I didn’t know how valuable this would be to me until I got one. The time out of the house it saves me and the decreased distance I need to walk to go somewhere has given me a bit of independence back. It has also help relieve some of the duties from my caretaker as on the days I do get out, I sometimes can fit an extra errand or two in and be back home and resting in the same amount of time.
13. Canes: Admittedly, I don’t use a cane at this point. However, there are plenty of days that I feel that I should be and it has been recommended to me. At times I’m unsteady on my feet, have fallen down the stairs, or simply need a bit extra leveling to my gait. It’s definitely on my radar as an option. Canes come in some pretty cool styles these days too!
14. Protein Bars: Having one handy can really help if you find yourself in need of an energy boost. A back-up bar can also really help get you through a longer than expected excursion out. A protein bar or even a package of nuts, has definitely saved me more than once.
15. Phone Alarms: Two words: Brain Fog! Time flies, we zone out, and all of a sudden we are running late to a doctor’s appointment. Sound familiar? I now live off an alarm-based system for my daily activities. It started with just alarms, but I quickly found them going off and then not knowing what they were for. Not wanting to be outsmarted by my own hack, I’ve now started labeling them on my phone so I know what to do when.
16. Plan Ahead: Or as least as much as possible. If you live in a two story, you know how exhausting the stairs can be. Now, if I am upstairs, I try to think of everything I will need for the next few hours before heading downstairs. This alone has saved me from a walk/crawl up the stairs multiple times a day for one-off items.
17. Roomba: I haven’t invested in one of these yet, as my caretakers do my vacuuming, but this is coming right up on my must-have list. Vacuuming – the push, the pull, it’s all so exhausted. The Roomba not only gets the job done but it’s a bit entertaining to watch.
18. Grocery Shopping: Online or pick-up shopping has become a must-have for me when my caretaker isn’t able to do my shopping. Between walking the aisles, putting things in the cart, loading the car, unloading it, and putting everything away…. Exhausting! This task takes me down every time!
19. Amazon Account: I have found this priceless for buying groceries and other essential items. The delivery is quick (usually two days) and the options are plenty. No more exhaustive trips to the store for light bulbs, toilet paper, or a new book to read.
20. Hobbies: Finding a hobby you to do on challenging days, right from our couch or bed can be priceless. There are many options; for me, I’ve found writing, reading, drawing/coloring, crafting, and binge-watching television (if that can be considered a hobby) to be great distractions from the challenges of the day.
I hope this list has helped or at least got you thinking of what tip, tricks, or hacks that you can integrate into your day that will save you some time, make something easier, or minimize your pain. Every little trick helps!
My list is far from exhaustive. If you have some of your own tips, please feel free to share them in the comments so we can build the list and learn from your success!
Additional great ideas from readers:
Additional great ideas from readers:
1. Breathing Exercises: Breathing exercises can be of great help with getting
through a difficult procedure, flare-up in symptoms, and a de-stresser. There are some fabulous DVDs, free apps and online resources out there that can help you get a good rhythm and your strategy down. Once you've got it down, you are ready for whenever the need arises.