The first few steps are always the hardest

Yesterday there was a lot to celebrate.   Yet also an enormous amount of frustration and sadness. After 3 weeks of being flat on my back I was able to get back on my feet.   I was vertical for the first time in what seemed like an eternity.   

I spent a week in the hospital.   My neurologists were still not convinced that I didn’t have MS so I underwent a lumbar puncture.   I was on a lot of blood thinners for my lupus-related clotting issues to prevent further strokes.    And because of those blood thinners, the hole in the lining of the spinal cord (the dura) refused to clot. Spinal fluid continued to leak causing the most horrendous headache and electrical pain from my neck to my tailbone.

An anesthesiologist attempted two blood patches.    A blood patch is a procedure of injecting my own blood into the spinal column with the theory that the blood would clot and seal the leak.   Yet with the blood thinners that I needed to take in order to prevent another stroke….. the leak continued for two weeks. As a result, I was unable to even sit up without pain, nausea and vertigo. And because of that, I was not able to begin rehab for the effects of my stroke (balance, coordination and weakness).

I will admit that I likely did not make things better the first day I got out of the hospital.  

The neurologist came close to sending me to a rehab facility as I really struggled with coordination and walking. Coach Stephanie was with me at the moment he suggested this and scheduled my PT evaluation. I had a bit of a meltdown and was determined more than ever to not let that happen. When the PT came later in the day for my evaluation I told her I was good and was able to walk to the bathroom and back.   I had plenty of help at home and I was NOT going to a rehab facility. That was the end of that.   PT signed off that I was OK to go home and not into rehab.

My first day home from the hospital wasn’t bad as my spinal headache was relieved by the blood patch I received the evening before while still in the hospital. The extra blood in the spinal column helped regulate the pressure and I was feeling rather good. So I decided I’d do my own rehab and go for a long, clumsy, uncoordinated walk. I think I made it two miles or more. I fell once. When I returned home, my legs felt like lead and were shaking like a newborn colt on it’s first attempt to stand.

I dragged myself back into the house and proceeded straight to the bathroom to vomit. Yep, I am never  one to follow the “do things in moderation” rule. Sometimes I think I’m invincible and I have to learn the truth the hard way.

The leak was obviously not gone and I was back in bed laying flat to prevent the pounding head pain. The next morning it was so bad that I called the anesthesiologist and he ordered me to come in for another blood patch and IV hydration.

This gave me relief for approximately 6.5 hours. Then it came back and this time with much more pain down my neck and back. And a lot of electric shooting pain down my legs. I was miserable and felt hopeless.

My husband had to get me dressed and drive me back to the hospital for 3 liters of IV fluids and much better pain medication. There would be no more attempts at getting out of bed for at least three days. Complete bed rest until the headache was gone. Three days came and went and it was still not gone. I was utterly miserable and depressed for the next week.


Luckily we are the owners of two residences at the moment since we are renting an apartment while our house is being renovated. So we plopped a twin mattress down in the middle of the living room of the house where I could rest without extra stress of the kids tempting me to get up to do things for them.

But yesterday the headache was gone! I was celebrating and decided to head to Chain O’ Lakes to meet Stephanie for some trail maintenance. With my balance issues and unsteady walking, I knew I would simply be there to keep her company as she raked the trail.  I lost it in a moment of self-pity watching a couple runners come running down a hill. I had a hard time just standing upright and there I was watching runners frolicking toward the parking lot. I was mad at myself for letting this bother me, but the emotions were overwhelming. I also could feel the distance I had created between myself and all my past running friends over the last couple of difficult years.  I had a mind filled with negativity and it pushed me to sit in my car and cry. I was tempted to go home, feeling completely out of place.

Eventually I crawled out of it and got on the trail with Stephanie. Walking on asphalt is one thing when you have neurological deficits. Walking on trails with roots and hills is a completely different animal. Stephanie put the rake down after a little bit and helped me maneuver over the obstacles. We probably went no more than a quarter mile, stopping to do various balance exercises along the way. We repeated a difficult section covered in roots and, with her supporting me, I tried standing on the roots to challenge my brain even more.

I tired out extremely quickly which made me even more frustrated. But I was out of bed and enjoying a beautiful morning on the trails. I had to see the positive in this.

Feeling guilty that I had contributed nothing to trail maintenance, we headed for lunch and a much needed martini. It wasn’t exactly the celebratory martini I wanted… no long run, no records broken… but it tasted good and was a huge relief to be sitting up. But I was so tired I felt myself dozing off sitting at the table. I drank two cups of coffee to keep myself awake enough to drive home. Then I took a nap.

Upon waking from the nap I felt a little more energized and decided to ride the stationary bike and work on more balance exercises. I was on a mission to get my body back. I rode 30 minutes then completed a couple sets of easy squats, leg lifts and clamshells. I completed this “workout” and again was exhausted. It was a full day.

I’m far, far from running 100+ miles. Running Badwater 135 in 10 months seems like an unreachable goal right now. But I can’t let myself think about that. I need to see the small victories I make each day. I went from being on bedrest to walking on trails, doing balance exercises, riding the stationary bike and doing a leg workout.  Every day I will aim to do a little more than I did the previous day.


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