My Spoonie Essentials
The Things that Help Make my Fibromyalgia Manageable
Living with chronic pain/illness makes daily life much more challenging. I have fibromyalgia (which means I hurt all over, and I’m tired all the time, and this really sucks), and have acquired—both before, and even more so after my diagnosis—things that help me function more like a human, and less like a bundle of burning nerves! Here are some of those things I have acquired, and some helpful tips to also help you become more human-like too.
I use my cane most of the time now. Between the constant tiredness, the multiple knee surgeries I’ve had to correct my alien kneecaps, and random spouts of dizziness, my cane comes in handy. Although, there are times when I feel very self-conscious about using a cane at the age of 25 (it is my birthday as I am writing this; Happy Day of Birth to Me!) and walking more like a 92 year old, I have come to realize my health is more important than people’s opinion, or what my anxiety is telling me. Plus, my cane is very pretty! It has lovely, colorful butterflies on it. My helpful tip for using a cane, or really any mobility aid, is to rock it with confidence. You health is important, and these things can become essential to some people. Get one that is absolutely adorable! Find one that matches your aesthetic, and make it a visual of your personality. And don’t worry about what people think. Haters are gonna hate, but, at least I’m not falling all over the place.
I quickly realized that my shoulders were not equipped to carry the huge purse, and all the junk in said purse, they had carried once upon a time. So, I searched for an alternative. I found the alternative in a shoe store, in all places. This backpack had a crossbody strap, but the weight become more centered on my back than on my shoulders. I found that this kept my shoulders from hurting as much, and actually made me stand straighter, which helped my back quite a bit. Besides, it is the cutest backpack ever. Once again, I found a backpack that was my aesthetic, and showed off my personality quite well. It has cats… with glasses. How much better can a backpack get?
When you hurt all the time, your social life tends to go down the drain the more hermit-like you become. Technology has allowed me to continue to keep in contact with friends, make new friends, and keep in touch with the outside world. I livestream on Twitch (twitch.tv) using my Xbox, and my iPad. Playing video games and chatting to people on Twitch has allowed me to connect with people who have a common interest as me; it lets me yap and goof off while I kill dragons, and I feel like my social life is halfway normal. This has often taken the place of face-to-face contact for me, since I’m a little hermit hobbit, and I don’t leave my hobbit-hole like I use to. I also use my tech to help with my fibro fog. The calendar on my phone is filled with important dates, such as doctor’s appointments, bills that are due soon, and birthdays. "Memos" on my phone is filled with old shopping lists, because having it written (or typed, but you know what I mean) down makes it less likely I will forget something in Walmart.
Speaking of Walmart. Electric carts are next on my list. Though my beautiful cane is helpful, sometimes it is just not enough. In large stores like Walmart, I need a cart to ride on. Getting exhausted, and then having to unload groceries when I get home, making me more exhausted, is not a good idea. Sometimes, I have to swallow my pride, know my limits, and take a ride on the mild side. Saving my spoons is worth it.
Heating Pads and Ice Packs
Though medicine has come a long way and can be very essential, sometimes it's not enough. Heating pads and ice packs help relieve sore backs and legs, and also help control my temperature. Because, if you are anything like me, I go from very hot to very cold, very quickly!
Well… when I say “pillow,” I mean a giant, super squishy stuffed animal that I use as a pillow. But he (affectionately named Sloppy the sloth) is perfect for sleeping on, and is even perfect for throwing a leg over, if I need to. He's from the Squishmallow brand. Look into getting an adorable pal of your own!
My Shower Chair
Absolutely essential! Showering for some people is very relaxing, but, for me, it is very draining. Between random dizziness, and becoming more exhausted every time I lather my hair, I'd rather sit my booty down than have an ambulance called, and paramedics see my girly bits!
My Support System
And, now, for the most important thing: my support system. My family and friends who are always there for me to complain as loudly as I like, without judging me. The friends who make me laugh when I'm down on myself. The family who remind me they are always there for me. And the great online community I am a part of, that looks out for each other.
All these things make my life a little easier when I'm having a rough go with the fibro. But no matter what chronic illness you suffer from, your health is important, your pain is valid, and you should feel confident in using any aids you feel you need! And rock it!
From one spoonie to all the rest,