I continue WEGO’s Health Activist Writer’s Month Challenge (#HAWMC). Day 18: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going
5 Challenges of My Autoimmune-Polycystic-Bipolar Life:
- Lack of control over my schedule: Many days my itinerary is determined by how much pain and fatigue I’m experiencing. Myasthenia Gravis (MG) comes with varying degrees of pain and fatigue. There are episodes (as many as 7 days) when it feels like the polycystic ovarian syndrome (PCOS) is kicking my butt. Fighting chronic illness is like running a race with no finish line.
- Loss of feeling in arms and legs intermittently: MG is a neuromuscular autoimmune disease that affects most parts of my body. Many of my friends with muscular dystrophy and MS tell have similar stories of falling down. I hate buildings that are not disability accessible. And I can’t remember the last time I used the stairs in my house. I never imagined being young and carrying a cane.
- (Temporary?) loss of dreams: Before I got MG, I was planning on going to law school. I sometimes I joke that I received my Masters from the University of AI, University of Autoimmune.
- Spending more time at home: The other night I was so bedridden that I actually took five different “Which Saved by the Bell Character Are You?” quizzes! Yes, five of them. Four said I was Kelly Kapowski; one said I was Mr. Belding.
- Stress & depression: I struggle less with depression as an adult than I when I was younger. With bipolar II (I was diagnosed at 18), I used to have changes in my mood where I would feel depressed for no reason at all. That rarely happens now—I attribute that to a wide variety of reasons that includes finding the right medications and therapy. But at times, the chronic physical pain can be depressing.
5 Victories In My Autoimmune-Polycystic-Bipolar Life:
- Greater faith: One of the biggest lessons I’ve learned from losing control is that letting go isn’t always a bad thing. I don’t have the energy to care about all the things I used to. I worry about the “little things” less. When I’m afraid of things like going to an interview, I ask myself, “Is this harder than having surgery without anesthesia? Is this harder than having your neck cut open and glued together? No. So it’s not hard.” And I put on some red lipstick for “lipstick courage.”
- Deeper appreciation of family and friends: I previously blogged about “5 Reasons People Abandon a Sick Friend.” While some people have left, the majority of my friends have stuck by me. I have a greater appreciation for those relationships and the “little moments” like having an impromptu lunch with a friend or the times when my six-year old nephew tells me jokes to make me laugh because he knows I’m in pain.
- Empathy and meeting warriors through this blog: Through this site and Facebook and Twitter, I’ve met so many amazing people fighting a wide variety of illnesses like fibro, lupus, and Parkinson’s. Whenever I hear about someone going through a trial, even if it’s not illness, I try to help.
- Better sense of humor: I laugh more. Being sick, I’ve developed a greater sense of humor like when I “vacationize” my hospital visits. I can’t take vacations and spend too much time at the hospital. I make the most of whatever situation I’m in like wearing a lei and treating the hospital visit like it’s a Hawaiian vacation.
- Better body image and self-confidence: There was a time when I gained ten dress sizes in two years, mostly due to Prednisone and being bedridden. I endured a lot of insults. But I also, ironically, learned to love myself more (see, “4 Tips for Casting Off Self-Hate and Loving Your Body More”). For three years, I took style notes on sickness—what works and doesn’t work. Those notes gave birth to this blog.
–Your Stylist, Jessica Gimeno
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