After the consultation with the Physical Medicine and Rehabilitation Specialist & Orthopaedic Surgeon I managed to make it into the taxi before breaking down. The driver was so concerned that he pulled over and attempted to console me with kind words and prayer, in that moment I could not be comforted.
I was no longer dealing with GBS solely, I no longer needed only time for my body to heal and recover. My legs were mere inches apart and they will remain in that position for the foreseeable future…Neurogenic Heterotopic Ossification (NHO) meant that I could not stand upright, move my legs to walk, climb stairs, side step, extend or open my legs…no amount of time, physical therapy or effort on my part was going to change that, regardless of if my nerves regenerated fully or how strong my muscles became my hips were never going to move without major surgery that may or may not work!
Emotionally I was at the lowest I had been since my initial diagnosis of GBS…I felt utterly hopeless, I did not have the energy or inclination to talk to anyone, I could not eat and my insomnia and pain intensified. I watched television all day and night just for the distraction from my thoughts and feelings. Days passed as I waited for the great epiphany that never came, eventually I started pretending I felt better to appease my family and apparently I was able to fool myself as well!
I was going into my second week on the non-steroidal anti-inflammatory drug (NSAID) Indomethacin. To reduce the potential of excessive bleeding during the Manipulation Under Anesthesia (MUA) which was scheduled for the 05th of October, I had to stop taking the anti-coagulant, it was a huge relief that I no longer had to be injected daily.
At physical therapy I started using the partial weight-bearing harness system. My knees were bending more freely and I was able to use ankle weights for leg extensions and hamstring curls. I could now roll onto either side or my stomach with relative ease although I still had difficulty remaining in a sitting position unless my back was supported. The spasticity in my hands had improved significantly, I was able to curl my fingers more and grip items better so I started using hand weights to increase the muscle strength in my wrist and arms.
I attended a family luncheon and I travelled by car for the first time post GBS. Since being discharged from the hospital in May I had only left home to go to therapy or to doctor appointments and because of the stiffness and pain I had only used the taxi fitted with the wheelchair lift. Initially I was very apprehensive, I did not know how I would feel being in a familiar setting when so much had changed for me. I was self-conscious about my appearance, the wheelchair and the fact that despite my best efforts I could not have a meal without spilling or chew with my mouth closed. None the less, I managed to apply my make-up without losing an eye, by another trial and error moment we successfully navigated getting in and out of the car – my brother lifted me from the house, the car seat had to be reclined to the fullest extent and while he was placing me inside head first, my mother was in the car supporting my back and helping to pull me in – and despite the soreness I felt in the days following I did something “normal” and it was worth it.
239 days with GBS & NHO and the rollercoaster ride continues…
*** I’m believing that there is a blessing in this storm***
