There is a saying that time flies when you are having fun, the opposite holds true! I was home for only three days but they were three especially long days and I was reeling from the pain, exhaustion and whirlwind of emotions and thoughts.
I met with the physical therapist and she reiterated that I had a tremendous amount of work ahead of me. The rigidity of my body was a concern, for comfort I was using pillows and bolsters under my back and knees and as a result they were now permanently arched and painful to move. Another issue was the extent of my muscle atrophy. Muscles start to lose mass and atrophy after 3 weeks of inactivity, I was in MICU for 8 weeks not moving at all and then I spent another 8 weeks with only limited movements which meant that my muscles were severely atrophied. Time was against me, we discussed the option of home visits but decided that I would benefit most from a minimum of three office visits per week and my first physical therapy (PT) session was scheduled for the 03rd June. I wanted to be walking unassisted by December and we made that my short-term goal.
My first PT session was similar to my first three days home…long, painful and exhausting, the only difference being that it was also inspiring. It was the first time that I was leaving home since I was discharged from the hospital and like everything else it was a trial and error learning process. I am smiling inwardly as I write this because the time and effort involved to get me dressed, seated and adjusted in the wheelchair, down the ramp and placed in the taxi’s wheelchair lift was more strenuous a workout than the actual PT session. At the end of it however, the physical therapist had completed a series of range of motion exercises, established my limitations and devised a workout plan that was going to help me move forward. In between sessions and in addition to my routine and exercises from the hospital, I had to practice lying flat on the bed and try to move as much as possible despite the pain. I felt good.
When I started researching GBS I immediately had a couple of revelations. 1. my state of mind and mood could change in literally a moment 2. my eyesight had deteriorated significantly, I could no longer read fine print and attempting to use the laptop for any length of time resulted in blurred vision and headaches. 3. my family had coddled me, GBS was much more distressing than what I thought. I was told that I had a severe case of GBS and with time and therapy I will make a full recovery. In fact, I not only had a severe case of GBS but it was the variant acute motor axonal neuropathy (AMAN) which is considered to be the most severe of the 4 variants and characteristically has a longer recovery time. In addition, many persons with GBS of any kind fail to make a full recovery and are afflicted with residual physical and health effects for life. I would like to state that I took all of this new information in stride and I was emotionally stable but I can’t. The optimism I felt about being home and starting PT was shaken.
Mid-month I started vomiting and having severe stomach pain. Up until that point I had cried silently when the pain was too intense and I had felt overwhelmed, fearful, uncertain and sad but in that moment I felt abject terror. I thought that I was having a relapse and I had an emotional breakdown, I cried uncontrollably and for three days I questioned the universe about its’ desire to target me. The bout with the stomach virus left me weak and more exhausted than usual. The pain, tingling and shock-like sensations in my legs intensified and I was having muscle cramps. I was unable to get out of bed and was forced to miss PT the following week.
By month end however I was slowly regaining my strength. I had not achieved any physical milestones, I was still experiencing sleepless nights and was in an incredible amount of pain but I had survived my first month home and 147 days with GBS…
