28th – 31st May 2016
Day 114 / 28th May: 16 weeks after the onset of my symptoms I was being discharged from the hospital.
Physically this is where I was: I had sores on my scalp, my hair was damaged and missing in patches. My facial muscles remained very weak, I was having involuntary muscle spasms and I couldn’t smile, sneeze or open my mouth sufficiently to yawn or chew properly. My vision was blurred and my eyes were extremely sensitive to light. The laceration and tracheostomy on my neck were almost completely healed. 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. My fingers on both hands were clawed and rigid and I could not make a fist. The area where the feeding tube was inserted was bandaged. I could only sit up with assistance and even then my spine was curved significantly and had to be supported. The numbness, tingling and shock-like sensation were even more prevalent in my legs, I had absolutely no movement at my hips, ankles or toes, with assistance my knees could bend slightly but were extremely painful. The ulcers on my heels were not fully healed. I was yet to regain bladder and bowel control and I was constantly hot and perspiring. I needed to be log-rolled and required full lifts to be transferred to and from the bed.
Despite the physical, the reality of no longer being confined to a hospital room was liberating and I was extremely excited. I was warned that I needed to take one day at a time but I could not relate. I was finally getting back some level of normalcy in my life, I was going to be home among my family, I intended to research and gather all the information that I could get on GBS and I had plans to arrange a consult with the physical therapist to schedule my sessions as early as the coming Monday. I was ready to get over GBS and being home was essential to that process.
Although my family and the occupational therapist had discussed the logistics of being home, the reality took more than a few trials and errors. I was now accompanied by a high-back reclining wheelchair, an electric bed, multiple wedges, bolsters, pillows and cushions, oral medications, pre-filled syringes, antiseptic liquids, creams, bandages, incontinence products, fans, an over-the-bed table and the list goes on….I needed a lot of space! The bedroom was not ideal so one of the living areas was converted into my space and re-organized until we found a set up that worked. That problem was solved and I joked that I was living in the living room.
The down side was that from the living room I observed the household going through their individual routines and I could not participate. Being confined to a hospital room is one brand of torture, being home, among familiar things and can’t access them is another. The door was there but I could not go through it, the fridge was there but I could not go get a drink of water, the bathroom was down the hall but I could not go to use it. Life was happening all around me and I felt stuck, it was extremely frustrating.
In the hospital I had multiple persons and departments (e.g. kitchen, laundry) attending to various aspects of my health care, at home I had only my family. It was a tremendous strain and sacrifice for them to cater to all my needs and provide the excessive amount of time and attention that I required. They did not hesitate to rally around me but I could not help but feel responsible for placing so much on them.
I soon realized that the warnings were valid…with the pain and whirlwind of thoughts and emotions by day 117/31st May I was yet again overwhelmed – physically, emotionally and mentally. I was forced to acknowledge that GBS is complex and cannot be conquered in a moment, I had to dispel how I thought my life was supposed to be and accept it as what it was; my body and mind were traumatized and they had to go through a healing process – operative word is process!
