Normison
Your Replies
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August 21, 2016 at 11:59 am
Mission accomplished, Jazz. Your post says it all… there’s realism in your voice, not minimizing the challenges you face in recovery, yet at the same time, hope. It’s a missing ingredient that drives so many GBS folks into ambivalence. It’s funny how even the least micro-improvement can be hopeful, which is exactly what we all need to hear, and it does encourage. You’re a brave heart, Jazz, hold fast to your moments of grace and savor them. Our prayers are with you toward a future of significance and increasing joy.
July 22, 2016 at 12:31 pmHi, Nursenoel,
You are in a place of waiting which only a select few can identify. I admire your honesty, accenting just how difficult the day to day is. There is no euphoric high with this kind of discomfort, just dealing with an ordinary day is a challenge in itself. A GBS friend of mine here in CA took down unnecessary pounds with stationary equipment at home, once he got back minimal tone and a degree of strength. I hope the same for you when that day comes.
The fatigue is still with me today. It’s altered my lifestyle somewhat, but thankfully I was able to get back into surfing and swimming after a prolonged season of recovery.
Again, thanks for sharing.
July 12, 2016 at 1:25 pmHello, Jazz,
We all appreciate your gutsy honesty as you articulate your GBS symptoms. You’re not out of sync at all with your issues. Picture us all in a circle trading stories, I trust what we share back will be encouraging to you.
The 9 months or so post GBS were by far the hardest for me, and much of the struggle was mental. The hardest was grieving (if that’s the word) the loss of my “former body.” Mine was a Miller Fisher variant, so I suffered double vision, loss of balance, and no vestibular nerves on the right inner ear. This resulted in chronic motion sickness and having to wear a patch over one eye to function. SUPER weird and debilitating. I had been teaching elementary school for 27 years, and had to take the rest of the school year off. My entire identity was broken, for it’s all I had done throughout my entire adult life.
That was in 2000, and here I am 16 years later, alive and still telling the story! My life has taken a different path, career-wise, but it’s OK.
Please hold on to this thought… By the grace of God, your brain will, yes, will come to accept the changes that have come about in your body. And these nagging residuals will, believe it or not, become “normal” and doable. For some these symptoms clear up entirely over time. But even if they don’t, you’ll be fine.
It seems simplistic, but just as citlaw mentioned above, finding the things you can do and expressing gratefulness is the key to your own personal peace and well being. You will feel a peculiar love and grace coming near to you, helping and strengthening you from one day to the next.
Keep posting, this is a place you can vent and know we’re all listening.
