Guest blogger Eryn Lynum shares her epic journey of finding life, health, and running after Addison’s disease and anorexia.
I should not be a runner.
In fact, there are a lot of things I should not be. I should not be a mother. I should not be a writer. I should not be healthy. I should not even be alive.
When I was fourteen years old my adrenal glands gave up on me. Or rather they put up one heck of a fight yet lost their arduous battle against my very confused immune system, which attacked them until they were completely destroyed.
Never again would I feel the heart throbbing thrill that rushes through your veins as you peak the top of a roller coaster, and then let gravity have its way as you race back to the bottom. Never again would I take a simple ride in an elevator without an inevitable and debilitating dizzy spell at the end. Never again could I trust my body to come to my rescue with its “fight or flight” response when I was in a bind and needed just that extra bit of super strength or endurance.
I have Addison’s Disease, and this is why I should not be a runner.
“You had the lowest blood pressure of anyone I had ever seen alive.” This is what my doctor told me months after he diagnosed me with Addison’s Disease. He also told me, after the fact, that I had been pretty close to death, and he should have hospitalized me straight away.
He had immediately placed me on a regimen of replacement hormone steroids, which I would be dependent on for the rest of my life. My body now had zero ability to handle any level of stress, whether mental or physical, and these steroids would be my lifeline, literally, when stress inevitably comes my way.
My doctor told me I should be able to have babies one day, and I should be able to live with few major complications. But he also told me that I would have to learn to watch my body closely and listen to it intently for signals of stress and signs of it shutting down. He told me I would experience regular bouts of dizziness, shakiness, and chronic fatigue. We had caught it earlier than most. Yes–I would live—but things would be rough from there on out.
“What Are Your “Should Not’s?”
Maybe you have heard similar words. Maybe a medical diagnosis or the circumstances of life have reared their ugly heads and threatened to steal the joy out of life, or to render you unable to pursue your goals and dreams.
Maybe they have planted those words of doubt: “You should probably just give up before you put too much effort into something that will never be.”
Sometimes when life knocks you down it becomes a snowball effect. Disappointment, failure, poor choices, loss; they compile on top of each other until you find yourself completely buried. Your goals which once seemed close now look hazy, faraway, and out of reach.
A Downward Spiral
Bum adrenal glands were not the only health crisis my body experienced during those years. In high school I made a poor choice (Don’t we all?) I stopped eating.
In a pursuit of perfection and falling prey to the allure of mystery I dabbled with anorexia for several years. Not eating is bad for anyone. Not eating when you have a disease that causes you to “crash” and potentially die under extreme stress– That is a recipe for disaster.
But God is gracious, and over time I went on to completely recover. I still don’t understand it; some things in life are just that way. Despite the lies in my head and the lies on my tongue, truth ultimately triumphed, and I healed. (Read more of my story, here: http://erynlynum.com/about/)
And Then I Almost Died. Again.
Yet even with more food in my belly, I wasn’t thriving. And years later, after my finger had a few years of wear from a wedding band, and with a brand new baby in my arms, we faced the biggest scare with my disease yet.
It was two days before Christmas, 2011. Our baby was five months old. His aqua eyes captivated me; I was a new mother and completely in love. He had spent the day before recovering from the stomach flu, and as I held him close and comforted him, my stomach began to turn as well.
This was the meanest stomach bug I had experienced since being diagnosed with Addison’s, and so we were naïve in thinking it would simply pass. That evening I laid motionless on our couch after throwing up every fifteen minutes throughout the entire day.
My body had long ago burned through my medication, which enables me to manage stress without passing out, and I could not keep any more medication down. I began to pass into semi-consciousness. My husband looked at me and realized at once what was happening—I was “crashing” into an Adrenal Crisis.
Adrenal Crisis
An Adrenal Crisis happens when someone with Addison’s disease faces so much physical or emotional stress that their body begins to shut down. My blood pressure was quickly plummeting, and if we did not act fast I would go completely unconscious and face possible death.
I carry an emergency injection for times like these, but we still weren’t sure how serious the situation was. I had never before experienced an Adrenal Crisis. Looking back, we should have administered that injection hours earlier; instead we did not inject it at all. But we did rush to the emergency center.
I was admitted that evening and spent all of it and the next day on a drip of my medication to restore my system. The rest of Christmas week I spent exhausted and in a daze. This experience made two things very clear to us: 1. We now knew when to use my injection in case this happened again. And 2. We had to find a way to make me healthier.
What Once Held Me Captive Was Now Setting Me Free
And so we overhauled our diet. We began to phase out any convenience, processed, and fast foods, and embraced a whole food way of eating. Out of necessity, I finally learned to cook!
We began seeing results. I was determined to keep our family on this path to wellness, and so I began writing. And I kept writing. And cooking. And eating. And we kept feeling better and better, to the point that my symptoms have become virtually non-existent!
Food, something that had once held me captive by fear, was now setting me free from chronic illness; it was healing me.
We are on a continuous journey to progress our health. We understand that perfection is unattainable, but that we can make choices each day to keep ourselves well and continue moving forward in finding a healthier us.
One More Stride
I took another one of those steps forward last fall. Although we were relatively active in Summer months, going on many family walks, regular exercise was definitely missing in my pursuit of health. And after a long week of Thanksgiving celebrations (and food…lots and lots of food!) my husband bought us a gym pass.
My first visit I ran a half mile. I felt wobbly, awkward, out of place, and incapable. But I determined that I would train myself to run a full mile. And before I knew it I was running 4 miles 3 times a week. And I couldn’t stop.
With my heart racing (well, as much as it can without adrenaline…) I clicked “register now” for my first race. It was a test, to see if I could really do this. After a rough start and unexpected hills, I barely drug myself across the finish. I had stopped twice to walk for a few seconds. Although I had no problem running 3.1 miles on a treadmill, I knew that I had run a poor race, and I was disheartened.
But then my husband grabbed my shaky shoulders, looked into my eyes, and asked me if I saw my time. My head was fuzzy. I was tired. I didn’t know if I wanted to see my time. But then he told me. I had run the course in 26:24; I had placed 4th in my division! Not too shabby for my first race and no adrenal glands! I started looking for my next race, which we ran together on vacation 2 weeks later, placing me first in my division!
“I Am” Over “I Should Not”
Perhaps you have your own unique reasons that you shouldn’t be a runner. Maybe you, like me, never intended to pursue a hobby like this. But then you laced on a pair of running shoes just to see what you could do. And your body surprised you—and you were hooked! And suddenly your excuses or reasons, even if viable, started to seem less significant, and you began to realize that you are capable of much more than you realized.
So you signed up for a race. And although half-way through you swore you would never do it again, as soon as you crossed the finish line you were on your smart phone looking up another one to register for.
The truth is that my disease and my past should not have any say in how abundantly I choose to live my life. They do not offer me an excuse to not run, or to be a lazy wife, or an impatient mother. My disease is no excuse to live life less; it only means that I have to fight a little bit harder, and a little more strategically, to live life to the fullest.
Today, by the grace of God, I can say that I am a runner, and that I am going to race in a half marathon this fall. I am a writer. I am a wife. And I am a mother. My path hasn’t been easy. At times, I have made it harder on myself. But looking back I can see that every stride was building my story, that each time I placed one foot in front of the other, the voice saying “I am” began to overpower the voice saying “I Should not”.
We all have excuses. We all have some powerful “Should Not’s” in our lives. And many of us have some very real odds set against us. But all of us can find a way to navigate around those challenges and over those hurdles to accomplish what we once thought was impossible.
So, what voices are telling you that you should not be a runner? I challenge you to prove them wrong. I challenge you to run. And then run again. And then run just a little bit farther. And then run just a little bit faster! Prove your excuses empty and your odds wrong. Prove to yourself that you are capable of much more than you ever imagined!
Thank you for sharing your story with us Eryn! This reminded me of how fortunate I am to be able to run and that I should never take that lightly.
Thanks Trevor! It meant a lot to me to be able to write my story out and share it.
Hi, it was wonderful reading your story!!! It was extremely encouraging. 😁
I was diagnosed with Addisons and I am a “new runner” ( I am 65 and planning on running my first 1/2 marathon in 10 weeks).
I was wondering how much you increase your steroid (hydrocortisone or prednisone) before training or before a race. I am still trying to figure it out. I find it very difficult to predict. How much to increase and when, before or after.
Any information would be greatly appreciated. Thanks for being an inspiration.
Hello, I liked your article. I hope you can share more about how you trained for it though. See I don’t know if running is too much of an option for me, I have adrenal insufficiency, but I’ve had it since birth. I know I can run 5ks if I put my mind to it, but I think it may be unsafe for me to do half marathons. I would love to, but a 5k can put me dangerously close to adrenal crisis. I sit out and drink gatorade and take my pills as if I did run a whole marathon.
What do you recommend?
Sorry Hope, I meant to reply directly to your comment. See my response below, thanks!!
Hi Hope
My name is Rich.i am 45. I have had type 1 diabetes since I was eleven hypothyroidism since my freshmen year in college and Addison’s disease since my early 30’s.
I have run one marathon and several half marathons.
The key for me was listening to my body and being hyper vigilant about monitoring my sugar levels and getting blood work done regularly. The other thing you must do is talk with your endocrinologist. Let them know your intentions. Mine wasn’t thrilled but he also knew I was going to try anyway so he wanted to be part of the process and helped in adjusting my medications.
Anything is possible.
Rich
Hi Hope, thanks so much for your comment, and that is a great question!
Fortunately I am a bit more prepared to answer it then I was back when I wrote this article, as since then I was able to run my first half marathon. I even had an extra “challenge” thrown into the mix of training, as I became pregnant with our third child, and so ran the half marathon with Addison’s disease and at 14 weeks pregnant. I had to be especially careful in training.
I can;t offer any official suggestions, as I am not a doctor. And I do know that each of us with adrenal insufficiency experience symptoms to differing degrees. So I can only share emu personal experience, and I hope that it helps!
First, train very slow and steady. While most people can easily prepare for a half marathon, or even a full marathon in 4 months or so, it will take us longer. I trained a whole year for my half marathon. Make sure you are always challenging yourself, but do not push to hard!
Keep in mind that you may need to do a lot of run/walk intervals. This is what I did when I became pregnant, and I found myself getting dizzy on runs. I would run for a couple miles, then walk for a bit before resuming running. You may need to even stick with that for the race, and that is totally fine!
Secondly, I believe what we eat has a HUGE impact on how we live with adrenal insufficiency, and how we run. A few years ago I overhauled my family’s diet. We now eat very little processed or junk food, and eat mostly whole foods. It has made a HUGE impact on my Addison’s disease. I now live pretty much symptom free. I know that, had we not made that switch, I would not have been able to run a half marathon.
Here’s a link to my site where I talk more about the way we eat: http://erynlynum.com/what-is-whole-food/
I am hoping to run a full marathon next year (after I come back from having this baby in a few weeks). And I realize that most likely, to conquer a full marathon with Addison’s disease ,I will need to further hone our diet. Most likely I’ll have to go a bit more “extreme” and fat adapt my body, something Angie and Trevor talk a lot about here on Marathon Training Academy.
On that note, cutting out processed grains such as wheat, along with sugar, is a very good idea. It may take time to cut them all the way (or mostly) out, and that’s fine. This is a process. But you will begin feeling better and better! I would definitely avoid high-sugar things such as gatorade, especially because with adrenal insufficiency our blood sugar can already be a big mess. Eating high quality fats instead (nuts, nut butters, organic meats and dairy, free-range eggs, ect), is a much better way to fuel, especially with Adrenal insufficiency.
Lastly, always, always carry an emergency injection (if you’ve been prescribed one). Wear a medical alert bracelet. Consider even amebic alert patch to go on your running shirt or gear. Always run with a phone (and pepper spray 😉 in case of emergencies. It also helps if you have someone, whether a spouse, friend, whatever, who always knows when and where you are running. Just be as careful as you can be.
Wow. That was long—but I hope it is helpful! Let me know if you have any other specific questions!
Eryn
Hi Eryn, I also have adrenal issues, mine is a little different. I have hypophysits, my pituitary does not tell my adrenal glands to work. I take prednisone daily and I was wondering if you take more cortisol before you run.
Thanks, I really enjoyed reading your article.
Cathy Marks, Ontario, Canada
Hi Cathy, thanks so much for your comment!
I do increase my cortisol for more strenuous runs. If I know that a run is going to be particularly challenging, a longer trail run for example, I might take an extra 5mg before the run. I make sure to take it at least an hour or so before the run, to give it time to kick in.
However, some days I can run a long distance and not need to increase my dose, it all comes down to how I have been feeling. If I ever feel dizzy or lightheaded after a run (which is rare), I take an extra 5mg.
Of course, I am not a doctor, so consider talking to your doctor about needing to increase your medication depending on your running regimen. Even when I was training for my half marathon, when I asked my endocrinologist if I needed to increase my meds, he said I shouldn’t have to, if I was training right.
I hope that helps!
Hi Erin!
I just happened to google Addison’s Disease and running. I have Addison’s Disease as well, although my health story is a little different. I did my 4th half marathon yesterday, and have not been feeling well all day. So…naturally I decided to Google 😂! I have walked 3 in the past, and did okay. But I decided to train to run this one, and yesterday I ran it! I did it! I ran it, and it was the most amazing feeling! Anyways, your post was just what I needed to read. I completely understand your determination to live! I know this is an old article and you may not even see this comment. But wanted to say that I loved your post!
I have has Addison’s Disease for 21 years. I was diagnosed during a crisis in the first weeks of my second pregnant year. My sodium was a death level (108) and I “should have been” seizing in the table in the hospital. The baby in my womb “should have” had brain damage from the seizures I should have been having. God saved my Barbary and me that day.
Thank you so much for this post! It’s motivating and encouraging! I was told after delivering that healthy son that we should hurry to have a third, or plan to adopt. I would soon be inferitle due to this being my second immune disease. Infertitity and type 1 diabetes were to be next. God gave us four more kids after that, and I still do not have diabetes.
I started running some last summer. I walk and run, running 2.5 miles and walking 1.5 total most days. I’m thankful that I can do this as a full time teacher, Mom, wife, and middle-aged, at that. I have my first 5K in 3 weeks. I hope to work up to triathlons.
God’s grace is amazing. He provides all I need! He keeps me going!
We are two peas! My sodium was 108 at diagnosis and I ran my first 5k on 4/22. Training for a 10k now!