“Why can’t I catch a break?”

‘I am done!” “I am so over this!” “I do not feel strong” “Why God are you doing this? What am I to learn from this?” “Why can’t I catch a break?”

These are my feelings I have when I am having one of my rough days and feeling overwhelmed with thoughts and feelings. Feelings of frustration of my situation; helplessness as I have no control as I am a quadriplegic; exhaustion as I think I can’t do this for another 15-20 years; and acceptance of “this is what your life is now”. That last one - acceptance is one of the hardest ones to work through. I didn’t do something stupid to cause me to become a quadriplegic - I ate undercooked chicken! You read about other GBS survivors who was also paralyzed from head to toe, but within a year or two, they have recovered to the point they only need assistance to walk. So why at 3.5 years, am I a quadriplegic from the shoulders down? How is this fair? So I guess the other feeling I have is anger. 

During counselling, 10 years ago, we worked through the death of sister Kathryn. She must have been dealing with issues unbeknownst to us, which lead to taking her life. Through counselling, I learned there are stages of grief - denial, anger, sadness and acceptance. Definitely have experienced all those stages through my recovery of GBS. I think I will always be working with these stages as long as I am recovering from GBS. Ever since I was diagnosed with Guillian Barre Syndrome, it’s been one medical problem after another - cardiac arrest, severe bradycardia, DVTs, blood clots in my lungs, infections in my lungs and blood (sepsis), recurrent UTIs, complications with all my external devices - PICC/CVC lines and Foley catheter, and getting neurogenic bladder & bowel due to the nerve damage caused by GBS. And those were just my first year in ICU! All the while, paralyzed from the shoulders down and having respiratory complications due to GBS impacting my diaphragm function. It has not been easy to accept all the things I have lost, accepting all the ongoing issues like urinary catheter blockages and repeating changes due to those blockages. It just snaps all your energy to point where you need that release, for me that is crying while venting out my frustrations I am feeling. I know my HCAs don’t like to see me cry and they try to comfort me. I find myself apologizing to them, as I am not frustrated at them, but I am frustrated with my situation. 

I am lucky I have psychologist on my team - as I will need to have that support moving forward. I also have wonderful friends and family whom I can vent and cry with so that I don’t bottle up my feelings and thoughts inside of me. Definitely not a good idea as it contributes to negative and a short fuse with having patience and understanding. It is a fine line too. It was after my sister’s death, I read her journals while going through her cancer the second time (15-16 years of age) - now that she lost her whole arm by amputation due to recurring osteogenic sarcoma which requires more assistance from others to do once simple things - the feeling of being a burden. Definitely I can relate to this, as I suffer with this as well. I know I should not feel this way as these people who want to help me are doing it because they love and care about me, not because they feel pity or it’s something they need to do. It is genuinely given - their support, their encouragement and their love for me. Things I face each, reminders of what I have lost and will probably not regain, it can become overwhelming feeling/seeing that reality. Remembering the simple things in my life prior to GBS like jumping into my car and driving to Three Hills (a little over an hour NE of Calgary) to join in a celebration with my second family, the James/Paterson/Rish/Keatley clan). I can’t do that anymore - chair is too wide and it’s out of Calgary so I have no transport to get me there. So I try not to dwell on it and try to stay positive. Realizing it is natural for these rough, negative days, just important not to stay in that place long.  Of course, easier said than done.