GBS: Learning to Accept and Adapt

 When one experience repeat traumas or major changes in their life, I feel we gain tools to help us through the next trauma or change. If you have many, you can find the strength to handle them as well as find better coping mechanisms, to see us through to the other side. Though I wished I didn’t have to go through these multiple traumas within a 10 yr period (my mom and sister Kathryn being diagnosed with cancer (‘86 - ‘89); Kathryn’s death (‘94); my mom’s near-fatal post-op complication (‘97); and parents divorce (‘97)) - but I did. Then from 2010-2013, I sought counselling to deal and begin healing from these traumas and other things as well. I was told I had very good cognitive skills to be able to move forward in my life. What learned through my counseling, I forgot about the emotional pain that one deals with any trauma. For example, I thought I had dealt with Kathryn’s death. The answer was yes and no. Cognitively, yes I healed to allow me to enjoy living. I buried my emotional pain for 18 years, where through counseling I began my healing. Just saying, this was was a lot to absorb and work through in a short period of time for me. Then September 9, 2016 happened and my life was once again turned upside down again. 

Two weeks from today, after getting food poisoning, stomach flu (diarrhea), I woke up with both hands numb and tingling. Then it began a couple of hours later, starting at my feet, then ascended upwards. Then within 24 hours, I lost my balance, the ability to walk, had terrible pain in my abdominal area, and then needing oxygen as I was having trouble breathing. As the virus continued to attack my body the doctors had to intubate me to a mechanical ventilation as I needed help to breathe to stay alive. As I had explained in other posts, the next 6 weeks all I remember are terrifying nightmares, but have learned 3 days after my admission to the hospital I was given an EMG (electromyogram) where I was not only diagnosed with Guillian Barre Syndrome (GBS) but they were able to determine my GBS variant  - severe case of AMSAN - Acute Motor Sensory Axonal Neuropathy (AMSAN) which is a rare and severe variant of Guillain-Barré syndrome (GBS) that has a prolonged recovery course. GBS is often suspected due to ascending muscle weakness, sensation difficulties, respiratory compromise, and antecedent diarrhea. I had all of those symptoms. In addition, AMSAN impacts the autonomic system (breathing, blood pressure and body temperature) - and I have suffered those symptoms initially and some of those symptoms I continue to have today. 

2 years in the hospital and 4 years in a LTC facility - definitely didn’t picture this in my future, but this is my reality. Throughout these years, I have had to relearn so much about myself, learning more about my diagnosis and working through what my new reality will be. It is not an easy challenge to get through. So many tears, venting anger which I then apologize to that person(s) on my behaviour as it wasn’t their fault. Crying and venting are my coping mechanism to handle my pain or the overwhelming cards I have been dealt. I have heard people tell me, “I’m an inspiration” or “Do you know how strong you are?” or “I couldn’t get through what you have with the same grace and strength as you”. I still don’t know how to react or how to reply as I don’t always feel these things. Learning to just say, “Thank you.” 

One of the biggest issues I have to face each day is the constant 24/7 pain throughout my body. The numbness and tingling is felt primarily in my extremities. Some of the pain comes from “phantom pain” because of the axonal damage to my nerves. Neuropathy is the most commonly described as feelings of sensations of numbness, tingling (“pins and needles”), and weakness in the area of the body affected. Other sensations include sharp, lightening-like pain; or a burning, throbbing or stabbing pain. It is the pain as described in the last sentence that hurts the most as it comes on all of sudden and I have to let it take it’s course. Happens the most in my feet and hands. That pulsating stabbing pain not only afflicts the fingertips but the joints too. This was an issue to try to tell my ICU staff as I couldn’t talk due to tracheotomy which was attached to the ventilator. More tears for those situations as communication was difficult. With any touch on my extremities, would send electric shocks going up and down my arms or legs. It becomes painful when additional pressure comes with the touch. Have to take deep breaths to help with the pain. For the first few years at Skypointe, I have been able to keep distracted so I could ignore the pain. I had put my base pain level as a 3. Since the beginning of this year, the pain level has increased to a base level of 4. The only way I can describe it, the numbness has thickened while the tingling continues in my legs and arms but it now across my chest (shoulders to shoulders). Also at time, this numbness goes up the side of neck to join my numbness in face. I have lower facial paralysis and the numbness 24/7 is ear to ear and sometimes across my forehead. 

Wednesday morning, I went to meet my specialist, Dr White who is a neuromuscular physician, for annual follow up appointment. Dr White is one of Calgary’s guru on GBS, so I am fortunate to have him as a physician. He is very patient with me, as I ask all my different questions at him as I try more and more to understand my diagnosis, GBS - AMSAN. This appointment was no different. One of the things I appreciate about Dr White, he is a realist but he is not one to take away hope as we don’t know what the future holds for any GBS survivors. In this appointment, we talked through my case, asking if there is any new treatments for me and so I can be realistic about my own recovery. Knowing what I am hoping for but hearing the reality, is tough to hear, that I got choked during the appointment. Having to give up my hope of going back to my career as a Coding Coordinator in Data Collection in Health Records. A career that spanned 30 years and enjoyed doing every day. As it will be 6 years since initial diagnosis, any recovery would have happened already as it usually is seen up to 3 years and after that any residuals are permanent. 

This is my reality - my quadriplegia will stay shoulders down, the numbness and tingling I have throughout my body is permanent which means I will have 24/7 of pain for the rest of my life. There isn’t any point having repeat EMGs as the 3 EMGs that I had after my initial EMG have not changed. Telling us that the severe axonal damage to my peripheral nerves was basically done within the first 3 days of my admission. I felt so defeated. I felt overwhelmed hearing and understanding my circumstance. My body is exhausted and I ask myself, “Why did I survive if this is what my life will be?”

Just has I have had to do many times in the past - I have had to learn to “Accept and adapt”. If I couldn’t “accept and adapt”, I wouldn’t have been able to move forward. I would be stuck, or be a bitter person. So this is what I will need to do now. Some things will be easier than others. I stand by my quote, “If I have my 3Fs, I can get through anything. Family, Friends and Faith.” It’s been my constant every time. 

To help me bring myself out of these dark spots, I had search or remind me of my silver linings or my positives. I remind myself of my many blessings that bring me joy and a smile - family and friends who have been there from the beginning, having such wonderful doctors and specialists in my corner, and the friends I have been able to reconnected with because of Facebook. Though traveling is not in my future at the moment, I have such wonderful memories of travels that I have been on. I have been fortunate to be “auntie “ to some of my friends children - sharing in their joys and happiness bings the same to me. To be able to move forward, I just need to find new joys, new adventures that gives me same happiness, just as I had when I was an abled bodied.