Confessions of a Concussed Cyclist: the hits just keep on coming

July 11, 2019

I’ve been debating for the past three months whether or not to write this particular “confession”. Let me tell you a little tale and perhaps you’ll understand my apprehension…

I was hit by a SUV in August 2014.  Since then I have progressively gained weight despite continuing to exercise and being careful about what I eat.  It has become a huge source of embarrassment, frustration, and depression for me. I’ve cried to my neurologist about this a few times and in turn she is careful to never put me on a medication that has “weight gain” as a side-effect.  In March of this year I finally decided that this was out of my hands and I needed medical help so I went to a local primary care doctor. At that appointment I was lectured on eating fried food, fast food, and junk food (all foods I try to avoid). I don’t take kindly to being lectured, especially when this doctor never even asked me what I ate, he assumed.  [Do you see why I was apprehensive about writing this “Confession”?] I’ll save you the play-by-play but trust me when I say I let this doctor know I was not happy and that I was not leaving until he did something other than lecture me. He agreed to blood work. Two days later my phone rang “your cortisol level is very low, I’m going to refer you to an endocrinologist”.  I smiled smugly and replied with “Oh! So something IS wrong!” 

In April I met my newest doctor (oh the list just keeps on growing)…an endocrinologist.  At this appointment I found out that my cortisol level was critically low; they gave me a shot to boost it but my numbers remained dangerously below normal (apparently you can die from this and my endocrinologist was worried enough about how low my numbers were that he wanted me to start cortisol therapy immediately…I just laughed and had the attitude of it’s been over 4 years, what’s a few more days?  But he did not find the humor in it that I did). Why is my cortisol level so low? Because my adrenal glands are not functioning. I learned that it is common for adrenal glands to shut down after something traumatic (say…getting taken out by a SUV while on your road bike!) but that typically they will begin functioning again around 3-6 months post trauma. I was four years seven months post trauma and my adrenals were still on vacation.  Why did mine not fire back up you ask? When your adrenal glands shut down, typically your pituitary gland would send them a message to shape up. Further blood work showed my pituitary gland was not functioning properly either. It was most likely damaged as part of the TBI.  

What does all this mean?  It means I am more broken than we thought.  It means that for over four years my body has been stuck in Fight or Flight.  I am gaining weight because my body is storing every fat, every protein, and every carbohydrate that I consume.  My body has been struggling for nearly five years.

With a severe lack of cortisol comes a severe exhaustion and weakness.  For almost five years now I have struggled to recover after a bike ride.  Ten miles exhausts me the way 100 miles used to. I used to whine to one friend about this and he researched (one of his favorite things to do) and came up with a great plan for pre- and post- ride fuel.  It did nothing. I whined to another friend and he looked at my fit of the bike and my form while riding (was I expending unnecessary energy with bad form?) but all was okay. So I just continued on…becoming more and more and more tired.  More and more and more weak. The lack of cortisol is to blame for this. Living with a TBI is tiring enough; you cannot turn your brain off and let it rest. Add to it a dangerously low level of cortisol and I feel like the walking dead. I struggle just to get into my apartment (granted I live on the 3rd floor but I should be able to run up the stairs instead of crawling).  I continue to exercise but it’s a painful process; ¼ mile into a 3 mile walk and I’m exhausted…1 mile into a 20 mile bike ride and I’m ready to jump ship and take a nap on the side of the road.  

I am taking a cortisol replacement.  At this point we are still trying to find the right timing for the medication so I cannot really say that it is working.  As far as my sluggish pituitary gland, that requires further testing before we can discuss treatment options. This testing is currently on hold until my cortisol level rises.

I’m not a person with thick-skin; my feelings get hurt quite easily.  I now live a life that draws attention and comments I do not want; teasing for stuttering or when I cannot retrieve a word, comments when I need to cancel and just lay low, endless remarks about me working reduced hours, being called lazy, comments about my weight gain, ridicule when my rattled brain makes a silly mistake…the list goes on.  

There is more to life than what you can see.  Before writing this, there was a handful of people that knew about my newest health issues and to that small group I need to give a big thank you for your support.  You were my cheerleaders when others were putting me down, when others were making assumptions about me without knowing the facts. I know I always say “if you learn nothing from me, learn how to share the road with cyclists” but I need to add something to this… “if you learn nothing from me, learn that people are going through things you cannot see, things you cannot imagine…be more gentle with those around you.”