When you can’t deny it any longer

Reality really sucks, you know that? Why does it feel you can’t catch a break? I didn’t ask for this to happen to and over eating uncooked chicken, imagine? A moment in time, is all it takes to change your world upside down and back again. Yesterday (Sept 10), I had an Nerve Conduction test and an EMG (electromyogram) to measure the reaction of my muscles and nerves. These are the tests they use to identify Guillian Barre Syndrome and your variant to help with the treatments to provide. The news yesterday was defeating as I was hoping for better results. In comparing the results from November 2016, July 31, 2019 and yesterday - there is minimal improvement to my nerves and therefore to my muscles. My nerves are too damaged to send the messages for my muscles to move. With the variant of GBS I have, Acute Motor Sensory Axonal Neuropathy - AMSAN. It the the axonal component of this variant that makes it have poor recovery or fatal outcome. The reasoning is how much the nerve has been damaged. If the myelin sheath goes through the demyelinating process, this is the outer part of the nerve, there is regeneration of myelin sheath about 1mm per day. In my case, the virus which caused my autoimmune response, went beyond damaging the myelin sheath, it went onto severely damaging the axonal component of the nerve, this doesn’t regenerate, just like cartilage can’t regenerate. Normally, as written in articles about my disease whatever the residual effects that remain after 3-4 years they would be considered permanent. 

Of course, I hit my 4 year marker yesterday since being diagnosed with Guillian Barre Syndrome. Today - I am still a quadriplegic from the shoulders down; need an indwelling catheter has I can’t walk to the bathroom and I am in constant pain being from the pins & needles, numbness, having any sort of pressure on my body and any other impacts to my body as I am immobile now, like edema in my hands and feet. There is no more I can do now - can’t live in the fantasy world too long - have to begin to face reality of what my life is going to be like for the foreseeable future. Definitely not one I have pictured for myself that is for sure. I am turning 50 next week and I need to begin rebuilding my life as a quadriplegic. Trying to keep in mind, I need to find my abilities within my disability now. Not that I am making light of my situation, but I do have the time to figure this all out. What I am trying to say, if I take it full on, it is going to be too overwhelming, frustrating and defeating which usually leads to depression. What I need to do is, take a chunk and go through the process to the end before taking another chunk and repeat the process until I can bring myself to a good place of acceptance. I am very fortunate to have a loving and supportive family along with encouragement from my friends. Plus having a great professional team to monitor me throughout this journey. 

Despite receiving this news yesterday, not giving up. It is what is in my foreseeable, but with medical technology and breakthroughs, that future can change positively. So in the meantime, I continue my weekly physiotherapy sessions to try to maintain or improve the muscle tone and strength and not let them atrophy. For any recovery keeping a positive outlook and attitude are essential. So we will to find how to keep my positivity going. Positives - yes it has taken 4 years but I was a total paralysis from head to toe; now my paralysis is from shoulders down - this is an improvement. I woke up unable to speak, people had to do lip reading for like 10 month; now I have my voice. I can be my own advocate, advocate for others, I can heard the sound of my own laughter. The realization I am not alone, facing this alone. A new passion and purpose in writing, be it in advocate letters or to post on this blog. 

This is a difficult pill to swallow and reality to face, but like it has does done in the past, having my 3Fs of Family, Friends and Faith - I will come out the other end with more knowledge of myself.