5 Good Ways Illness Changed Me
On Presidents Day, my mom, nephews, and I saw the The LEGO® Movie. We all had fun. However, the little one dropped his popcorn bucket because he’s little. Because of my neuromuscular autoimmune disease (Myasthenia Gravis, MG), I also dropped my bucket. (I feel bad for the employee who had to clean our mess.) After the movie, when I was in the bathroom, my purse fell in the sink! (The sink in the disability stall is large enough to bathe a small child). So my purse was floating like a rubber ducky in a bubble bath.
I laughed because pre-Myasthenia Jessica would have had a designer purse swimming in that sink. (This purse, by contrast, was inexpensive.) Before MG, I would have had a Prada or Louis Vitton submerged. Losing a $2,000 purse (even though it was a gift from my aunt) would have made me cry. Accidents can happen to anyone so this could have happened even I didn’t get MG.
Sickness and Self-Awareness
Don’t get me wrong: I’m not denying that chronic pain and fatigue suck but I’ve also learned some important lessons. Some of you might have always known these things but I’ve learned them having four illnesses: MG, Polycystic Ovarian Syndrome (PCOS), Bipolar II, and Asthma.
Sickness Taught Me How To:
1. Differentiate between wants and needs: Before I used to have 15 pairs of stilettos. I even had “errand high heels” for things like grocery shopping. That many shoes would be okay if I was a talk show host or a Sex in the City character but I’m not. Now I have a handful of shoes—wedges, flats, and winter boots, which are more than enough. The same goes for my purses.
2. Extend grace more: Before MG, I was always punctual and I got annoyed when people were really late to my dinner parties. Because of MG, it takes energy to shower and put my clothes on so I’m late sometimes. Occasionally, if I’m depressed, that can also make it hard to get dressed. Now, I understand how people with the best intentions can be late. Furthermore, 60% of my brain cells are devoted to memorizing medical information (how many meds to take, when the next shift is, when to call the pharmacist, when my next doctor’s visit is, etc). Today, despite my Type A personality, I forget things I never forgot before. Now when other people make mistakes, my first instinct is to give the benefit of the doubt.
3. Value “the little things”: As I’ve previously blogged, chronic illness has forced me to miss Thanksgiving twice. I’ve heard from many readers who say that they have no family to celebrate with, which makes me appreciate my family more. Last fall I attended my six-year old nephew Mikko’s piano recital. He greeted us at the door enthusiastically like the future talk show host he is. For our family, Mikko’s recital is just as important as Thanksgiving. The events I miss make me more thankful for the ones I don’t miss.
4. Find community in unlikely places: I’m an extrovert who has been forced to spend most of my adult life in bed. I was in excruciating PCOS pain on New Year’s Eve. But last NYE, I held an Online Party during SyFy’s two-day Twilight Zone Marathon. My goal was for no one to be alone on New Year’s. Fifty guests came and we now have our own Facebook group. And I will host another online party next NYE.
5. Not sweat the small stuff: I can laugh at things that might have hurt me in the past. For instance, I was at a small group meeting (church group) where we discussed creation and evolution. I cited apologists and founding fathers of the church that didn’t believe in a literal six-day creation. My point was that thoughtful people of faith could believe different theories. Then some people got really angry and insisted, “You don’t have faith!” After that heated exchange, people asked me if I was okay. I said, “Seriously? I’m in pain every minute of everyday. I’m not going to lose sleep because so-and-so doesn’t think I’m a Christian.” I’ve got bigger (proverbial) fish to fry.
–Your Stylist, Jessica Gimeno
10 thoughts on “5 Good Ways Illness Changed Me”
Jessica thank you so much for sharing this powerful story-I really think that when illness invades our life we have to bring our site down some when it comes to material things-I know it has for me how ever I still LOVE fashion!
Thank you for your insight Jessica. I am taking medications for chronic migraines, raising four kids, and trying to keep a clean house. On a day when I was feeling alone in not being able to formulate a coherent thought, I read the transparency in your blog and felt my weight begin to lift. Thank you! What an encouragement you are and have been to me. I look forward to hearing more from you in the future!
I just discovered your site, and have been clicking, reading, and nodding in agreement all night! I have fibromyalgia, autoimmune arthritis, migraines, IBS, GERD, and had a bunch of GYN problems until my hysterectomy 5 years ago … fun stuff! It’s so easy to let all of this bring us down (and of course, there are times that it does), but it’s so important to focus on the positives … it really is the little things that matter!
Hi Kerry! Sounds like you’ve got a lot on your proverbial plate. I’d like to learn more doubt IBS and GERD. I admire your positive spirit. At the end of the day I think the little moments in life can be the most satisfying–the moments that don’t go in the scrapbook (or Facebook photo album). Thank you for sharing your hope with us.
I have MS, yet I fit in here, and enjoyed finding you this evening. MSers, too, deal with pain 24/7 unless they are fortunate to have good remissions. My values have changed so much and giggled at the LV purse possibly in the sink “before,” Now I purchase for functionality. Will my Kindle fit for waits in offices? My medical records notebook goes everywhere as do supplies if my MS Spasms decide to attack my bladder or worse when out. We change our normals and get used to it. I would love to keep up with your blog. Thank you, Charlotte
Hi Charlotte, I admire people fighting MS. It was only five years into my illness that I knew anyone with MG. So I learned about surviving autoimmune hardships from friends with MS (including an aunt I makeover here: https://jessicagimeno.com/?p=459) and Lupus. I’m glad you liked the LV anecdote. I too have learned to purchase by functionality. Before I used to buy purses based on color coordination (many of them were too small to carry anything, in retrospect). Now it’s all about what fits all of my medical supplies. I’m sorry to hear about your MS Spasms but I admire your adaptability and resilience.
I hope I pass “moderation.”
I just found your site last night, and I just wanted to tell you how inspiring your posts are. I’ve had Lupus and its assortment of accompanying disorders (Sjogren’s, Raynaud’s, Fibro, chronic migraines and clotting disorders) for 10 years, but up until this last year, it had little impact on my life. But everything has completely changed over the last year. Because of the Lupus, I now have mesenteric vasculitis, and I’ve been in and out of the hospital six times since August. I’m now in bed most of the day, only leaving it to shuttle my girls to school and back. I’m still grieving everything that’s been taken from me, the loss of friends, job, being able to do things with my family. But I’m trying to find those moments of gratitude in each day, and one thing I’m definitely grateful for is finding your site. Thank you for sharing your journey.
Thank you also for sharing your story with me! Some of my best friends have Lupus. Five years into my illness was when I first made friends with MG so I learned about living the autoimmune life from people with Lupus. I hope that you can find some comfort and laughter in my blog as you spend many of your days in bed. I’m working on creating a biweekly e-newsletter. Next month, I’m going to start interviewing readers with a wide variety of illnesses. On our Facebook page, readers said it would be helpful to share and read other people’s stories (with aliases whenever people want). Please let me know if you are interested. I can’t imagine being a parent with so many chronic illnesses; you are an inspiration!
My friend, as always, your stories are uplifting and easy to relate to. With my lupus of 32 years, bipolar illness, asthma, GERD, cutaneous (at least for now) vasculitis or maybe scleroderma, Raynaud’s, osteoporosis in my lumbar spine that necessitated fusion surgery, and the need for a knee and shoulder replacement soon , I have days that I struggle to be active. I need some aerobic exercise to help me lose 60 pounds gained after my back surgery. I am enrolled in a Tai Chi class in February to help me get moving.
Playing piano uplifts my spirits. I wish I could share it with others.,
I draw in pencil and colored pencil, and am learning how to use pastels. This is not hard on my joints and helps me move beyond pain and fatigue. Sending pictures to my family members is rewarding.
Necessary changes in medication affect my bipolar symptoms until I adjust. These are difficult on my husband of 35 years, but we march on and go to monthly therapy sessions.
Going outside in the winter requires warm clothing and many layers of outerwear topped with fur-lined leather. Insulated boots are my only footwear.
Since my beauty must come from within, I treat myself to monthly facials, which has helped my self-esteem. I keep my hair short since styling is just blow-drying and some hair paste.
I need to communicate more actively on the internet and conform to a daily schedule. These are my new year’s resolutions!
Staying in touch with remote family is important but pulls on my heart strings.
Thanks for all that you do! Carol