Coping With a Difficult Recovery

As someone who lives with chronic illness, I have come to expect the unexpected in many ways. Unfortunately, life still throws curveballs our way.

Severe pain and a new diagnosis

This summer, my lower back pain became increasingly severe. After visiting the chiropractor multiple times for adjustments and massage therapy, he concluded that I had a disc herniation in my back, specifically near or in the space between L5/S1 (also known as the small of my back).

He performed some manual tests that indicated pinching of the associated nerves (tingling in my toes on both sides and weakness in my left leg), which accelerated the need for further testing. In this case, the severity of the assessment allowed me to bypass the typical insurance requirement of an X-ray and proceed directly to an MRI.

The difficult road to surgery

The MRI revealed a severe disc herniation that was pressing on the nerves in both of my legs and my spinal cord. I was immediately referred to a spinal surgeon, but it took two weeks to schedule an appointment. The surgeon determined that I needed a specialized microdiscectomy surgery using tubes to open the space in my back, instead of the more intense method of cutting through my back muscles. However, he didn't perform that type of surgery and had to refer me to his colleague.

It took another 2 weeks to get an appointment with the referred surgeon. During that time, the pain significantly increased, my mobility decreased, and 3 days before my scheduled appointment, I woke up with bladder incontinence. This meant that the disc was pressing more than anticipated and could potentially cause permanent damage if not addressed immediately.

Insurance, being the special entity it is, didn't see it that way based on some emergency room test results. As a result, I ended up waiting a whole week from that morning until the day I was placed on an operating room table. During the surgery, it became apparent that my herniated disc had ruptured, and fragments of the disc had to be removed while the rest was stabilized and cauterized to prevent future impact.

Unexpected challenges after surgery

Going into surgery, I was told that recovery should be manageable. I was told that once I stopped taking pain medication, I could return to work and resume most of my regular activities.

I'm not sure if this was significantly downplayed or if my experience was atypical, but the recovery from this surgery was incredibly difficult.

The brutal reality of recovery

The pre-surgery damage and the post-surgery recovery affected every part of my body. This injury and the subsequent recovery resulted in the most severe pain I had ever experienced in my life, which was honestly shocking considering I already lived with RA and Crohn's disease.

It also had a significant impact on my mental health. I struggled for several months, and when I was discharged from the hospital 24 hours after my operation, I was only then informed that I wouldn't be able to bend or twist from my waist, or lift more than 10 pounds at a time for 8 weeks. This meant that my 3-year-old daughter couldn't be part of the equation, and neither of us were prepared for this adjustment. I had no idea how challenging all of this would be.

For the first 2 weeks, I could hardly move on my own without assistance, and I needed a walker to move from my bedroom to the attached bathroom or to the car and the doctor's office. Over the next 6 weeks, I struggled to adjust to life without core strength or a reliable backbone (literally), and I began to experience a deep and intense stiffness that hadn't been explained to me before.

This stiffness made me irritable at the root of my emotions, and it made me so uncomfortable that I would often cry. It was frustrating not being able to move my recovery forward.

I'm no stranger to pain

As someone living with RA, I'm used to pain flaring up and then subsiding, facing challenging seasons and knowing that they usually pass, and returning to a manageable baseline. However, the emergency spinal surgery I underwent was unlike anything I had experienced before, and it left me with a long road of recovery that I hadn't anticipated.

Strategies to improve emotional well-being

Here are a few tips I've learned to manage my emotions and cope, even if only temporarily:

1. Find a TV show that requires your full attention. I found if I was immersed in a show I knew nothing about from the start, I couldn't think much about my pain or the challenges I was facing. It forced my brain to slow down, and sometimes, it even lifted my spirits for the rest of the day.
2. Use journaling as a place to brain dump. If I "yelled" on paper, it released something from me that I didn't have to keep carrying around.
3. Resourcing - find a therapist, a support group, another patient, or a partner. Find anyone who can be patient with you and who you can share the mental and emotional burden of pain and recovery of this magnitude with.

While I can't say these tips will work for everyone, they have helped me find moments of relief during this difficult journey.