10th APRIL – 28th MAY 2016
Day 66 / 10th April: After 8 weeks I was still dazed, partially paralyzed, swollen and prone to erratic blood pressures but stable enough to be transferred from MICU. I was attempting to speak but unable to make a sound so to communicate I reverted to blinking once for yes and twice for no.
Day 70 / 14th April: I was moving my right shoulder and the fingers on my left hand, remaining alert for longer periods of time and appeared to recognize my family. My words were slurred and incoherent and my voice was hoarse and barely above a whisper.
Day 76 / 20th April: my first distinctive memory since the 12th February and I was in pain. I wanted to move but could only manage to lift my head and right arm. My left arm was swollen and numb. My fingers were stiff and clawed and I could not move my legs. I was alone at the time, I remembered the consult with the neurologist and felt the panic all over again, my mind was racing and I started to cry.
There was a lot to process, the first thing being that I was critically ill for over 9 weeks, it didn’t feel like that much time had passed. The second reality check was the constant, excruciating pain that I was in, every part of my body was stiff and hurting. My legs were the worst, the pain alternated between sharp shock-like sensations and continuous sparks of electricity flowing just under my skin. Then came Guillain-Barré Syndrome (GBS) itself. For the first time since my diagnosis I was completely alert and able to process the disorder and its’ effects. I remembered the dread I felt in February when I was told that GBS causes paralysis, that was nothing compared to the feeling when I learnt that the average time frame for a full recovery post GBS is up to 3 years. Just imagine, after being able to perform from the simplest to the most difficult of the task of everyday living for over 30 years you now have to re-train every single muscle in your body…holding a fork and feeding yourself, chewing and swallowing, brushing your teeth or combing your hair, bladder and bowel control, talking, writing, sitting up, rolling over, standing, walking etc etc etc….overwhelming doesn’t even begin to describe it! The final shock was myself, I had lost over 50 pounds. The semi-paralysis and muscle weakness in my face prevented my mouth from closing completely, I was having involuntary facial spasms and my skin was covered in dark spots. I had scars and keloids on my neck from the central venous catheters and a bandage over the tracheotomy. I did not recognize myself…
All efforts were made to lessen the shock of what was happening, my family kept telling me that I had survived the worst and I was going to feel better. Between the pain and my thoughts I was unable to sleep that night. There is really no way for me to explain how being trapped inside your body feels, I just knew that I couldn’t exist in that way. I was determined to get back to myself sooner rather than later.
The days that followed were a huge transition, I spent a considerable portion of the day alone and unable to do much else than lay still. I had to be log-rolled or lifted for everything from sifting my position in bed to sponge baths. My speech was slurred and I would often have to repeat myself. I still had in the gastrostomy feeding tube, the intravenous and urinary catheters and I wore adult diapers as I lacked bowel control. I was being injected twice daily with medication to prevent blood clots, receiving medications to regulate my pain levels, heart-rate and blood pressure as well as antacids, vitamins and food supplements. My right arm was stiff but moving, the left arm however remained swollen and I had very limited movement at the shoulder. I was unable to move my legs and I could not feel touch. The physical therapist were unable to move my hips at all and my knees were stiff and difficult to bend. I had developed foot drop and the ulcers on my heels were still a concern. The most burdensome thing however was the constant and severe pain, I was experiencing burning, tingling and shock-like sensations in my back and legs. At night especially, my legs would feel numb and painful to the point that I thought they were going to shatter. I hardly slept and most nights I could do nothing but cry. There was one nurse who would come to my room at night, rub or move my legs and stay with me for as long as she could, I don’t think she knew how much that meant to me.
By Day 84 / 28th April: with the assistance of a speech therapist and the nurses, the muscle function in my face had improved and I was able to take fluids (medication, soups, water) orally even though the gastrostomy feeding tube remained in to provide the bulk of my nutrition.
My daily routine became set: I was lifted to a recliner chair in the morning. My first set of exercises where those designed to re-develop and strengthen my facial muscles. To reverse the spasticity in my hands and fingers and re-develop my fine motor skills I worked with play dough, hand therapy balls and jig-saw puzzles. I would trace numbers, letters, shapes and words in handwriting and printing workbooks. I worked with dot-to-dot colouring books (staying within the lines really isn’t as easy as you might think) and I practiced writing my name and signature. Physical therapy was especially painful and the hardest part of this routine, therapist would come in to move my joints through their range of motion to gently increase flexibility and reduce pain, swelling and stiffness. At night I wore hand immobilization splints and anti-foot drop boots. At every opportunity I was trying to move and regain muscle strength and function.
Day 95 / 09th May: I was switched to a semi-solid diet and I was able to hold a spoon with my thumb and first finger to feed myself. The nurses would insist that I try to brush my teeth and wipe my face. I was now able to lift my shoulders off the bed and sit up in a recliner chair for longer periods of time with less back pain. With the exception of words beginning with P’s and B’s my speech was much better. My heart-rate and body temperature had stabilized, at times my blood pressure would be low but not alarmingly so. The intravenous and urinary catheters were removed and I had stopped using the gastrostomy feeding tube although it remained in place. The pain, burning, tingling and shock-like sensations in my legs were ever present but I was ready to go home and intensify my physical therapy sessions.
I started campaigning for my cause, every day I would try to sit out a little longer, work with my hands more and have my family move my arms and legs and massage me. I would try to use the bed rails to move myself and assist the staff when they were log-rolling me. I never missed an opportunity to tell my doctors that I was much better medically and needed to get to rehabilitation.
Day 114 / 28th May: 16 weeks after the onset of my symptoms, I was finally going home….the family home was retrofitted, inspected and approved for my special requirements. I was tested and re-tested, examined and discharged by an internal medicine specialist, a neurologist, a gynecologist and speech, occupational and physical therapists. The gastrostomy feeding tube was removed, I was issued with all my medications and the ambulance was on stand-by. At 5:00 p.m. I ended an extremely difficult and scary period of my journey with GBS and felt genuine joy for the first time in weeks…
