Fighting through frustration

I know in a previous post, I said that the one word to describe my journey with Guillian Barre Syndrome was BLESSINGS. That statement is still true. Of course in any journey we walk we will have many others words to express our experiences. One of those words for me would have to be Frustration. 

How could it not be in my situation? A rare disorder (1-2 per 100,000 people) with no real reason and no cure either. To top it off, “Sorry to say this is the worst case I have ever seen.” - needing to be on life support for 10-11 months because I couldn’t breath on my own, but devastatingly I am unable to move from the shoulders down. I am a quadriplegic. Frustration, anger, feeling sorry for myself that I could no longer move my body. I have lost control, I have lost my independence with a snap of my fingers. 

Almost 3 years now (September 9, 2019) - I would categorize myself as an incomplete quadriplegic as I have begun recovering some movements in my body but still paralyzed from the shoulders down. Still living a totally dependent lifestyle in a nursing home with people who are 15+ years older than I am. I have no control of bodily functions so totally reliant on nursing staff to change and clean me as well as transport me to my wheelchair. I have those frustrating days when things aren’t going my way. You want to scream, cry when the frustrations get too much bottling up inside! 

It has been quite the process but I am learning to deal with my frustrations better. For me it is changing my mindset (easier said then done). If I stay in my frustrations too long, this when my “unknown reality” begins to feel overwhelming as you think of different scenarios I could be facing, each with a different outcome, not always positive. 

Recently, my doctor and I realize that I have gone as far as I can without mental health support; but with my upcoming nerve conduction test (July 31, 2019) I will be facing some reality information on how which nerves are regenerating and which ones are not. Information that will assist in preparing for my future, whatever it maybe. We know to have a professional mental health person to help me process through this information will be vital towards not falling into depression. As it has worked before, using the tools I was shown 10 years ago in counselling now, I am sure if I have tools to deal with emotions of this life-changing ordeal I will find that space where I can say “I will be okay.”






Comments

Post a Comment

Popular posts from this blog

Happy 50th Birthday to me

On September 17, 2020 - I turn the big 5-0!! Imagine I will be a half century old - 5 decades. How it has been a learning journey as I look back. Thought I would be reflective as I move into a new decade. Seeing how I evolved into the person I am to, you can see your strengths and weaknesses to your personality. Also you can see how events you have in life can change the direction you would have been going down. Of course, these same events can “forever change your life”, and one needs to learn how to pick up those pieces to continue on with your life. Some people don’t like to look back and only forward. If you lost someone, you don’t feel comfortable talking about this person, maybe as it hurts too much to remember the pain of losing that someone. I am of the mind - looking back helps me see how far I have come or what I have overcome.  In November 2009, I hit a low, probably a form of depression. I didn’t realize at the time, I was heading into a pool of darkness and negativity, not
Read more

Meeting Dr. Chris White - Neuromuscular Physician

On September 22, 2018, my friend Marilyn and I had the opportunity of attending an education session at Mount Royal University hosted by the GBS/CIDP Organization. The topic was GBS and IVIG treatment (intravenous immunoglobulin). The last speaker was Dr. Chris White, a neuromuscular physician from Calgary’s South Health Campus Hospital. In his presentation he described how IVIG treatment works depending on the type of GBS variant you have. In the presentations earlier left me a bit disheartening as I keep hearing people’s questions asking, “ I have been taking IVIG treatments for the past 2 years.. ”. I thinking, “ Are you kidding me? I only got in the beginning, September 2016 and now it’s 2 years later. Has my recovery been slow because I haven’t received additional IVIG treatments while in hospital?” But Dr. Chris White’s presentation helped me turn my feelings around. There are various variants of GBS and how you use IVIG treatments depends on your variant. Okay, feeling better
Read more
 Received great news yesterday (Oct 13, 2021) - AADL (Alberta Aids to Daily Living) has officially approved my application in purchasing a powered wheelchair 🦼. They will be purchasing the wheelchair itself, the cost of the tilting mechanism (~$3500.00) plus granted me another $4000.00 towards the cost of the Vigo technology to run the wheelchair. Maximum Healthcare is the name of the vendor providing me with the wheelchair as well as other accessories to help with my daily living such as a lifting of the wheelchair seat so that I can speak to someone at eye level for a change. The total cost for me will be $8003.00 for upgrades and accessories. So just like buying a new car or a house even, that is what has gone into purchasing my powered wheelchair. There is the basic powered chair (~$20,000) + all the upgrades (~$12,000) Excited to see what doors will open, literally. The major accomplishment for me, is going through the door of the sunroom area. My manual chair’s width prevented m
Read more