Guillain-Barré Syndrome (GBS) epitomizes change, pain and time at their greatest…
Every aspect of my life had changed, I missed the person that I use to be but most of all I missed the independence that I had taken for granted. No longer were my days filled with the hustle and bustle of living, instead it was consumed with the basic of task and I was on a very steep learning curve. In addition to the exercises from before, each week I had 1 occupational therapy and 3 physical therapy sessions, the focus was to further re-develop my fine motor skills, improve the range of motion of my joints and help me stand and weight bear. The occupational therapist would use hot wax and brown wrapping paper to force my fingers into a fist and then wrap them with elastic tape to reduce the swelling and stiffness. At home I was squeezing warm water from a dish washing sponge and on an hourly basis I was touching each finger to my thumb, bending each finger at the joints, picking up and turning over coins, stretching rubber bands, flexing my wrist and elbows and extending my arms and shoulders. Each exercise was to a count of 10 but I was so weak that by the count of 4 my muscles would be aching and trembling. At physical therapy, I learnt the technique of rolling onto my side and using my core muscles to assist me in sitting up. I received passive range of motion exercises and transcutaneous electrical nerve stimulation (TENS) on my legs, knees and ankles. At some sessions, I would use a tilt bed elevated to varying degrees to help me stand and weight bear, other times it would take three therapist to bring me to a standing position and hold my ankles, knees and torso in place. Again by the count of 4 my legs would be trembling and threatening to collapse. Each session was exhausting and I would be extremely sore afterwards.
All of the descriptive adjectives found in the English Language related to intense could be collectively applied to my pain levels, especially at night. I thought that I had a high tolerance for pain but GBS proved me wrong, the pain was constant and unbearable. I had three distinctive sets of pain in my legs – I would have continuous tingling and shock-like sensation just under my skin; sharp, ripping jolts of pain and extreme cramping, tightness and burning. At night that would all increase in intensity and be accompanied by a numbness that felt like my legs were going to shatter. My headaches would cause nausea, dizziness and blurred vision and my arms, thighs and stomach were sore, hard and bruised from the daily injections of the anti-coagulant. My lower back ached if I stayed in one position for too long and my left shoulder felt like it was ripping apart when I tried to move it. Neither tears nor any of the medications, topical rubs or herbal remedies that I tried offered any relief.
The healing process in respect to nerve damage is slow, that translated to me needing a lot of time to heal and having too much of it alone and to think; it became my greatest friend and worst enemy as my physical limitations were absolute but my mind was 10 steps ahead in my recovery process and impatient. All of my incisions and the ulcers were now completely healed leaving only scars, I referred to them as my war wounds, a reminder of the battles that I had fought and won. My short-term memory had become non-existent, I would start to speak and completely lose my thoughts. I had some improvement in the strength of my facial muscles but I still could not move my forehead, smile or chew certain foods. My body remained very stiff, minor movements were an exercise in patience and persistence and I still needed full lifts to and from the bed. I was now able to wear the foot drop splints on a daily basis and would stare at my feet for hours willing them and my toes to move. My days were long with very few distractions.
I had another episode with vomiting and stomach pain. This time it was not as severe and I was able to recover within days without any extreme or lingering weakness and fatigue. The complete lack of movement in my hips was not improving and an appointment was made to see a Physical Medicine and Rehabilitation Specialist.
Ultimately, the acronym GBS – Getting Better Slowly could not be more apt. The nerve regeneration process is estimated to occur at a rate of 1 inch per month. If you consider that my legs are just over 39 inches long, pure maths dictates that it will take more than 1,180 days for full regeneration, I was now at 209 days with Guillain-Barré Syndrome (GBS)….
