Those of us that live in the world of battling autoimmune disease understand the term “flare” far too well. A flare is when your disease is wreaking havoc on your body. Everything hurts. No amount of sleep is enough. There isn’t enough energy to do even the simplest tasks. If you get exposed to a cold or flu while you are in a flare, you can count on being extremely sick for days, and often weeks longer than anyone whose immune system reacts normally. No amount of Vitamin C or Zinc will shorten the duration of the illness. Being in a flare means missing out on the fun in life. Every. Single. Day.
For most of us spoonies, flares will subside on occasion. Our meds will be doing their job. Our bodies will be reacting as they should, not overreacting. We will wake up with energy, with plans, sometimes even with a new lease on life. Our friends and family will react with caution. They wonder how we are doing all that we are doing because they are conditioned to be understanding of our tired, hurting, always recovering selves.
I was in an almost perpetual flare for the last few years. Having three undiagnosed autoimmune diseases will do that to you. Frustration at not being able to be at my professional and personal best led to a lot of self hatred. I rarely was able to use my vacation days as anything other than sick days. Attendance at work became more of an issue each year. Once a top athlete, my body had become the enemy. I couldn’t be active without extreme pain and exhaustion. My weight skyrocketed. Being a lifetime avid reader, I could no longer read a page or two of a book without falling asleep. If I managed to get through a chapter, I barely remembered what I read due to brain fog. Each and every day was a battle that led to the need for more and more days of rest. The only thoughts I had in my mind about myself was that I was lazy, fat, and completely non-productive.
Prior to my latest diagnosis, I had no idea why I couldn’t be the athlete I once was. Thankfully numerous doctors’ appointments, dozens of blood vials, and a barrage of medical tests led to some answers. Treatment plans were started and stress reduction happened by no longer having the stress of letting employers down. My constant flare started to subside.
At the beginning of 2017 I started down a new treatment path for my extremely rare autoimmune disease, Lambert Eaton Myasthenic Syndrome. LEMS stops the nerves from communicating the impulses needed for muscles to do what they should do. My immune system was stopping the release of acetylcholine, which is the communicator between nerves and muscles. In January I started on Pyridostigamine (Mestinon), which keeps what little acetylcholine I have in my body there for a longer period of time. Strength and muscles started to return. With my muscles working better, my energy levels grew. I didn’t have endurance but things were getting better. In June I was started on a trial drug, 3,4-Diaminopyridine (3,4-DAP) that helps my body to release more acetylcholine. My world wide counterparts in the LEMS world kept telling me it was a miracle drug. They were not kidding. I now have endurance. I currently can live life almost like someone whose immune system isn’t the enemy.
What has not being in a flare looked like? It has simply been amazing. Aside from completing my first 5k without needing a week to recover, I’ve spent days at the beach. I’ve been on kayaking and boating adventures on North Twin Lake, near Mt Katahdin. I’ve been able to go to concerts with friends and date nights with my boyfriend. I’ve read some books; and have started this blog and other writing ventures. My closest friends have been on the sidelines holding their breath, anticipating me crashing hard as I have for as long as they can remember. When I make it through a busy time without crashing, they’ve also been celebrating the fact that I’ve been able to be me, for the first time in years.
An absolutely breathtaking sunset this past weekend on North Twin Lake, near Millinocket, Maine.
This me, not in a flare, is still cautious. I still need a “siesta” daily. I’ve learned that allowing any stress into my life decreases the effectiveness of my LEMS meds. Stress management is a must. I am avoiding foods that increase inflammation as I’m trying to keep my Psoriatic Arthritis at bay. I am stopping to smell the flowers, and enjoying the sunsets. I’m laughing more and hurting less. My healthcare team has been amazed at my transformation, as have my friends and family. I am finally able to live my life to the fullest, at least right now.
No one knows how long a break from being in a flare will be. It could be a long time, or things could flare again tomorrow. Things can change on a dime for anyone, even our friends who are healthy. One blessing for those of us who have lived with chronic or life changing illness is that we truly appreciate all the beauty and wonder that life has to offer, after spending so much time in darkness and pain.
I hope you find the following video, I Lived by One Republic, as inspirational as I have. When you aren’t flaring, please, don’t forget to live!
