So, I have a secret…and I am a little worried to share it. Let me start from the beginning though, so it makes sense why I am afraid. 

In February, it will be two years since I received a diagnosis of Tarlov Cysts. Before my cysts, I was a “gym rat.” I spent between one and two hours a day in the gym, but it wasn’t always like that. When my son was born almost 12 years ago, I set out on a journey to lose 100 pounds. (That story for another day.) 

There are little to no pictures of me at my heaviest. This is one of the few I could find, but I was larger for sure.

I did and along the way I started running. It took 18 months. As time progressed I ran 5k’s, and 10ks, and half marathons, and for my 35th birthday I ran a full marathon – 26.2 miles in San Antonio, TX. The Rock-n-Roll Marathon!

When I returned, I was ready for a new challenge. See, I was never athletic. I was always over weight. My wedding dress 20 years ago was a size 24. By the time I was running marathons, I was a size 4. That is a huge difference. But I knew, I wasn’t done working on me. 

During my time running, I noticed an increase in the number of times my leg would lock up. I just decided it was running related and stretched more, or changed my carbs. 

I pressed on, and my new challenge came to me in the form of lifting. Really lifting. When I go in, I am all in. You can see that in anything I do and care about. Sewing, my work, etc. But I was all in. After a couple months, I was bench pressing 135 lbs and squatting 185. Real presses. Real squats. To the floor squats. 3 sets of 20. Seriously squatting. I LOVED lifting. I really did. I started changing up my running and using it more for basic cardio or doing HIIT. 

Then the leg locking up started to increase. My husband noticed I was twitching significantly during my sleep. My arms and hands were going numb. For 2 years, I visited 4 neurologists with a list of 32 symptoms and NO one could help me. I was forgetful. I couldn’t recall names, meetings, events. The doctors were using words like, dementia, Parkinsons, RLS, ALS, brain tumors, MLS. Scary scary stuff folks. 

Finally, after 2 years, the diagnosis came from the 5th doctor. I wasn’t losing my mind. My twitching was keeping me from sleeping, which was affecting my memory. My symptoms were coming from the very small (but not really) perineural cysts called, Tarlov Cysts. I have 10 of them. I have 5 in my neck and 5 on my lumbar. 

Having a diagnosis was truly a gift at that point. Now I could make a plan. Until…she said the thing I was afraid of. YOU CAN NEVER LIFT AGAIN. YOU MAY BE ABLE TO RUN, BUT PROBABLY NOT. 

I am not going to lie. I ugly cried. I was pissed. I was so angry. Apparently, the trauma I caused my body from lifting, had taken something I was predisposed to and made it crazy worse. What was I going to do? I was afraid of gaining weight back. I was afraid of surgery. I was seriously pissed. 

New challenge. Figure out how to live life with these damn things growing inside me waiting to shut down my limbs. 

In the last two years, I have seen a huge improvement in my symptoms when I “behave.” The family has worked hard to help pick up some of the “heavy lifting” I used to do around the house. Certain movements set off my cysts. Straining activates cerebral spinal fluid, which is what makes them worse. 

When I start feeling good, I really start missing working out. When I was 250+ pounds, I never dreamed that running and lifting and even exercise in general would be so important to me, but it had become so. So, I would try it. She had said, I “might” be able to run again. With a dead treadmill, I would try outside. Start slow and try to increase. Then, it would happen. I flare up, and I would be right back where I started. 

Sigh! 

But I can’t stop trying. I have never been patient with folks to just roll over and gift up the ghost. I am a firm believer that you get from life what you put in. Do the work. Stop complaining and do something about it. 

There had to be a way to make something work. I started considering the issue. Don’t strain to the point that the cerebral spinal fluid gets inflamed. That means, that whatever I do, it not not put strain on my body. 

I made a plan. I will run a 5k, yes, in advanced runner terms, which is where I felt myself to be at one time, a measly 5k. But it will be something. 

My boundaries – and let me tell you that setting running boundaries is WAY harder for me that running the stupid thing – but my boundaries: 

  • Always walk for 5 minutes to warm up
  • Work your way up slowly with a run/walk strategy
  • Stay on the treadmill – no hills – a least for a very long while until you get stronger again
  • Be careful not to push it too far with other things so your body can recover
  • Don’t run more than 3 days a week. (I was doing an hour 4 days and 2 hours 1 day a week, so this is a big change)
  • Stop as soon as you feel strain or hurt and REST for 4 days

So, my secret? 

I started running again! AND IT IS WORKING. 

The boundaries are working. I am so excited!!!!! Today, I did three miles at a run 2/walk 1. I haven’t told anyone because I was afraid of hearing, you are stupid. You shouldn’t do that. I was also afraid of people not understanding either my need to run or that I can’t “just” do it. I have folks in my life on both sides. I am mostly afraid of my symptoms returning though and losing something I love so dearly yet again. 

But I AM!!! I am doing it…and it is working. I am soooo excited. 

So, I will be on the look out for a FLAT, very FLAT, 5K in my near future, and I will, over time, keep you posted about my training.