Tips and Tricks of the Trade From One Spoonie to Another
Good Morning(ish) to you!
As always, give the Song of the Week a look at for some spirit lifting or good time tunes.
Before I knew what the term “spoonie” meant or the significance of spoon reservation, I was a free wheelin’ fun lovin’ University student. I worked full time while studying course overload semesters and enjoyed many a fun night out with my girlfriends. Life was my oyster, so to speak.
It all came to a halt when chronic illnesses began to take over my body. I was no longer in control and the career and future I had planned on was not possible anymore. I felt lost. I felt utterly alone and scared. I began having panic attacks for the first time at 18 and had been free of them for years until the horrifying loss of bodily control saw them raging back, more powerful than ever. After what felt like decades of suffering, thinking I was the only one in the whole world who drew the short stick in life, I began a Tumblr blog to share my thoughts with whomever would listen. Not knowing what to do with Tumblr at the time, I eagerly searched for other blogs to follow and typed in “chronic pain”. This is where I first saw the word spoonie. Immediately I recalled hearing Christine Miserandio’s The Spoon Theory years ago and before I knew it I was YouTubing it again with new, desperate eyes/ears. Tears began streaming down my face as I connected with the words that I had struggled to find for so long.
Whether or not you relate to The Spoon Theory (some people simply do not like the comparison and have found other thoughts or theories they connect with more which is absolutely wonderful!) we tend to use the #spoonie name to find one another among the different Social Media channels. After my tangle with Tumblr (where I still occasionally blog/post/creep) I became quite obsessed with Instagram, and from there I began this website! I flirt with Twitter a bit and am working on connecting with every spoonie I can find! Spoonies stick together!
So You’re a Spoonie. Now What?
Once I found this community, the whole world changed. I found people who got what I was going through! I wasn’t alone in my “poor me, my life is awful” world anymore! I met people around the world who had a variety of illnesses and who were kicking major butt! My spoonie friends are strong as hell and more supportive than I can even say.
Six Steps to Spoonie Success
Step #1 when you begin to relate as a spoonie, find your people, find your tribe! Having this support is vital. They will help you in more ways than you can imagine. They will share their own tips and tricks and encourage you on your medical, spiritual, and emotional journey!
Step #2 is to become an advocate for yourself! I am in the process now of fighting for more referrals and getting appointment dates for doctors. It is stressful and exhausting; the life of a spoonie is not a particularly fun one as there is always stress on top of stress, but know you’re not alone! Doctors don’t always know what to do with us. It is tricky and sometimes takes years to get diagnosed with any type of illness (unfortunately), but stay on top of the doctors and fight for yourself and your health!
Step #3 is to understand that not everyone will understand your illness/es and that has to be okay. Sometimes family/friends/doctors don’t want to accept what is really happening. Some physicians don’t believe in several diagnoses (even with the mountains of evidence to the contrary). At times it can feel like you’re hitting your head against a wall trying to explain what is going on in your body, but you can choose to walk away if it gets too much. Let go of the toxic relationships and focus on the ones that support you and encourage growth. You have enough on your plate, you shouldn’t have to prove how sick you are to anyone.
Step #4 may sound silly but, find a hobby. Truly. These illnesses may keep you house bound and addicted to Netflix, but you need to find joy where you can. Write, colour, scrapbook, read, do puzzles, whatever your heart desires. I tried my hand at crochet but was unsuccessful. I did Tai Chi and was not the best student. I really enjoyed my venture into sewing and would love to get back to that! Give whatever you can a go! These illnesses take up so much of your energy and mind that we need some way to express ourselves being wrapped up in the weight of our pain/exhaustion.
Step #5 Make your life as easy as possible. Change what is not good for you. I realize you don’t want to be seen with a cane, but if it does more harm than good to go without it, bedazzle a walking stick and get over it. If the stairs are making you cry in agony, make the house as accessible as you can and if that means you need to move, so be it. I’m in the process of moving to a one floor apartment now. It’s heartbreaking but necessary for my health. If you can’t bend or lift, put whatever you need within reach. These things may sound sad and just a touch pathetic, but we’re all in this together and our lives are hard enough, let’s not make it any harder for ourselves. Also, take bubble baths. Do it.
Step #6 Find some local support as well! I’ve found a Fibromyalgia Support Group in my city and attend a Pain Management Group on Thursdays. I’m also a committee member for the London chapter of The Arthritis Society. It’s great to know what is available for you in your own city/town and what supports you can access.
I hope this helps in some way! I know how intimidating and terrifying this is. It’s a whole new world but you’re not in this alone…. I can show you the world…. hahaha
Love and Spoons!