Facing my reality

It will be 3 years this September that I was dx with GBS. Has it been that long? Learning how to use a mouth stick during the winter of 2018 with my iPad Pro, took some time as my neck was not the strong then. To keep me entertained in the evenings in the hospital, I said I was doing my neck exercises as my bought me the biggest iPad Pro - 12.9”, so you had to move your head side to side. Must tell you that it was awesome to be able to reconnect with family and friends on my own (email/Facebook) after not being able to for the first year and a half I the hospital.

You read it on the internet and hearing from your doctors, the nerves’ myelin sheath regenerates 1mm per day. So figuring being a “worst case”, it will probably take more time than the average GBS survivor to recover (6 months-3 years). Therefore my new friend is Patience, it is just going take time for recovery. And yes recovery has been extremely slow and it can get quite frustrating waiting for something to move again. You look at your hand/fingers and you try to will it to move but it doesn’t.  :(

July 2019 - I have been living at a nursing home almost a year trying to find a routine and remain positive and not giving up hope that I can continue to recover and have a “new normal” life again. My reality - after almost 3 years, yes I have begun regaining movement in my limbs, but I am still paralyzed from the shoulders down, confined to a wheelchair with a Foley catheter as I have no control of my bodily functions. Of course being totally reliant on someone to do my daily needs, even not being able to scratch my nose (That is the worst). My reality - I have lost what I call my “independence” (house, car, job), this disease has stripped me from all of it.  :(

In my near future, with the help of my professional and personal support systems, I will need to begin finding new ways and making goals to become independent in my dependent world. People say to me, “I don’t know how you are dealing with all of this so well. I know I couldn’t.” Or “You are the strongest person I know - you got this.”  Comes down to your perspectives of yourself in a situation. I don’t always see myself as a strong person, maybe being hard on yourself might make you think a different way. As for getting through it, all I can reply is, shrugging my shoulders and say “I just do”. Probably having to overcome previous challenges where I had to pick myself up and sweep away the dust and move forward, has come in handy now. As things start moving again, my reality will continue to evolve too. 








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