GBS Update: Thursday 2nd December

With snow days around the country, I thought people may find themselves with more time than usual to read an update.

Today is my first in eight months without any of the drug, Fentanyl, in my system. I feel pretty apprehensive about how the next few days will go, but also excited to be reclaiming my brain again. As I have weaned down the dosage, it has felt as if a cloud I had unwittingly been living under has been lifting. Fentanyl works by numbing the brain to pain, whereas the drugs I’m now left with focus on the nerves themselves, which are the cause of most of my pain.

I have had the opportunity to get back into a school environment once or twice recently, which has really helped me to start thinking about normality again, as well as giving me an impression as to what needs to improve before I get back to normal.

Last weekend I celebrated my 26th birthday, and in so doing marked 8 months of GBS. It was quite a poignant time, recognising that the original prognosis was up to 18 months in ICU, and that without the technology of the 21st century, without a world class health system, without armies of health professionals, armies of pray-ers and one great big God, there would have been no birthday to celebrate. I am truly thankful for everyone and everything which have come together to help me to this point. Thank you!

In addition to weaning, my main challenge is my feet: movement and sensation, both of which are improving, but both of which have a way to go! I also need to continue to see improvements in fatigue levels and stamina. Your prayers would be so appreciated – the journey is far from over!

I keep being reminded at each stage of the recovery that He that is in me is greater than he that is in the world – it is as true today as it was in those dangerous moments in April when it helped me so much.

With love and thanks,

Luke x

– Posted using BlogPress from my iPhone

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