My name is Dawn Drayton and I live in Barbados. At sunset on the 04th of February 2016 I was a normal, happy 36 year old.
I had life, good health and the love of my family and friends. My 15 year old daughter kept me focused, music and reading kept me at peace, life’s challenges kept me humbled and my dreams kept me determined…life was perfectly imperfect and all my own. The sunrise of the 05th of February 2016 was the catalyst for a series of events that threatened and failed to end my life but successfully altered its’ course forever.
Guillain-Barré Syndrome (GBS) started with bruises on my legs, swollen and painful ankles, severe back pain, a massive headache, vomiting and extreme fatigue. On my first to a medical care centre I was diagnosed with The Chikungunya Virus, given medication and sent home to rest.
Within five days my initial symptoms had worsen, I was experiencing numbness and a cold sensation in both hands and feet, my back pain was so excruciating that I could not sit, stand or walk unassisted and I had vomited so often that my throat and stomach muscles were sore. On the 11th of February, I attempted to get out of bed and I collapsed. I could not feel my legs and my hands were so weak that I could not push my body up.
On my second visit to the medical care centre I was referred to and admitted to the hospital. I spent that night in the most dreadful pain I had ever experienced up to that point in my life. The following day I was seen by an internal medicine specialist and a neurologist who indicated that he suspected that I had GBS and a lumbar puncture was needed to confirm. I had never heard of the illness and when he explained that it would cause paralysis I was terrified. Immediately afterwards I went into respiratory failure, had to be intubated and placed on a mechanical ventilator to breathe.
I was diagnosed with Guillain-Barré Syndrome-AMAN and for 9 weeks I was in the Medical Intensive Care Unit (MICU) in a coma and on life support. I was given a five day course of Intravenous Immunoglobulin (IVIG), blood transfusions and various medications. During that period, I was completely paralyzed from head to toe and attached to several different tubes, catheters and machines. My blood pressure, heart-rate and body temperature were all erratic, I was having seizures, my skin became dark and blotchy, my left lung collapsed, I became jaundice, I developed Bell’s phenomena, a sinus infection, heel ulcers and my body was swollen to more than twice its normal size.
The next time I was alert and aware of my surroundings was the 20th April, 2016. I was breathing on my own but remained partially paralyzed and unable to speak coherently. I had lost over 50 pounds, was still using a feeding tube and lacked bowel and bladder control.
I spent another 5 weeks in hospital beginning the process of re-training my muscles to complete the basic of task. On the 28th May, 2016 when I was discharged I was having involuntary facial muscle spasms and I could not smile, sneeze or open my mouth wide. My vision was blurred and my eyes were extremely sensitive to light. My body was stiff and painful. I had limited mobility in my left hand and shoulder, I was able to get my right arm moved across my body and raised to shoulder height. The fingers on both hands were clawed and rigid and I could not make a fist. I could only sit up with assistance and my spine was curved significantly and had to be supported. I had numbness, tingling and shock-like sensation in my legs and absolutely no movement at my hips, ankles or toes. I needed to be log-rolled and required full lifts to be transferred to and from the bed.
Fast forward to March 2017, it has been an emotional, long, painful and exhausting year…being home and unable to function as I did previously was a brutal reality check. I am still adjusting to living after GBS. I am in constant pain, suffer with insomnia and I get easily exhausted. I am always hot and perspiring, my short-term memory is non-existent and my eyesight has deteriorated significantly. My upper body is almost back to normal. Although I can now pull myself to a standing position, I still do not have feeling in or full function of my legs, I have severe drop foot and I am wheelchair dependent. I am doing occupational and physical therapy three times per week.
I have started a blog (https://www.dawndrayton-gbs.com); GBS in itself is a rare and it is even less common in Barbados, the intention of the blog was to build awareness of the devastating illness, reach out to other GBS survivors and make a positive difference in someone’s life. Along the way it has morphed into a form of therapeutic writing for me.
GBS has changed my life, it has stolen my smile and my legs but it will not break me…we are at war and every day is another battle, some days I win and others I have to retreat but I will keep fighting and surviving. I have lost and gained friendships but my daughter remains my focus and is my biggest inspiration. My family is my bed rock, I would not be here today without them, the hospital staff, my therapists and my prayer warriors.
Justine, thank you for the opportunity to share my story and be a part of the faces of Guillain-Barré Syndrome.
P.S.: We’re living with Guillain-Barré Syndrome (GBS), what’s their super power?
