Experiencing Guillain-Barre Syndrome Recovery: A Personal Journey
Experiencing Guillain-Barre Syndrome Recovery: A Personal Journey
Guillain-Barre Syndrome (GBS) can be a life-altering condition, affecting the nerves and often leading to temporary paralysis. As a recent recovery story, my personal journey can offer insights into the experience of GBS and the path to recovery. My journey began on June 26th, 2019, with a sudden onset of symptoms leading to my hospitalization and an intense period of rehabilitation.
Initial Symptoms and Hospitalization
The initial symptoms hit me like a wave on an unexpected rough sea. I woke up to numbness in my hands and feet, akin to waking up in a state of temporary sleep. Holding a coffee pot and climbing stairs became nearly impossible. By the afternoon, walking was completely out of my capabilities, and my speech started to slur. The symptoms continued to worsen, and just before midnight, my diaphragm became paralyzed, making it impossible to breathe. This led to an emergency intubation.
Paralysis and Recovery
I remained paralyzed for about two weeks. The next breakthrough was the return of my reflexes in my legs. I could wiggle my toes, a sign of gradual recovery. I was transferred between hospitals and moved through different stages of recovery, from ICU to outpatient therapies, learning to walk again. Today, my hands remain numb, particularly at the tips of my right hand, and I experience nerve pain that has been both challenging and complex to manage. The treatment varied, starting with morphine, then oxycontin, methadone, and finally, Lyrica.
Recovery Process and Physiotherapy
Recovery has been a long and sometimes painful process. I used to be an avid cyclist, riding both mountain and road bikes extensively. The doctors advised continuing physical activities, as they helped me regain a level of ability more quickly. However, it may take up to a year before I can resume seriously intense cycling again, if ever.
After one month in the hospital, I was mostly bedridden. Medications like Gabapentin helped manage the nerve pain, but standing involved lots of support. Weeks two to three saw a shift towards more active physical therapy, including exercises like clamshells and leg lifts while lying down. Yoga and flexibility training were crucial in regaining some of my former dancer’s muscles and movements.
Current Status and Future Outlook
Currently, I engage in approximately one to two hours of physical therapy (PT) daily, resume a modified dance routine, including barre work, and do additional flexibility training as needed. Fatigue is a constant companion, and activities like walking to the bus stop or cafeteria have become more challenging. However, I continue to push myself, knowing that recovery is a gradual process. Simple tasks like squats and lunges are part of my routine, and with sustained effort, I hope to see further improvement.
Conclusion
Recovery from Guillain-Barre Syndrome is a deeply personal and often challenging journey. Despite the setbacks and ongoing challenges, I am grateful for this second chance at life, both physically and mentally. The experience has also taught me to appreciate the simple things and find joy in the small victories of each day.