4pm, Monday 16th July
Each morning I wake, my body is tired yet my mind seeks stimulation. I push myself out of bed, stretch my calves and waddle to the bathroom. By the time I’ve had a shower, I’m exhausted. Morning after morning I am frustrated by my lack of energy. This is not me, or at least how I’m supposed to be!
8pm, Wednesday 18th July
Today was a productive day. In physio, Michelle brought out the giant inflatable peanut to assist with some exercises on the floor. After doing a little work on my core and legs, Michelle instructed me to come forward into a plank-like position so I could work my arms. As she kept nudging me forwards, my arms passed the point of no return and I collapsed onto them, face planting in the same motion. Completely stuck, I got Michelle to take a photo.
At the end of the session, Max (my brother) filmed as I walked out of the gym, passed reception and stepped outside for the first time without crutches. I tried the car door and to Michelle’s delight it was locked. Michelle told max not to unlock the car until I had walked a circle around the car park. I’m complaining but if I’m being honest, it was worth it.
In the afternoon, my father, mother and I made the two-hour journey to Kent to see the GBS specialist in the UK, Dr Robert Hadden. Dr Hadden gave us plenty of time to ask him questions about my case and what I could do to improve my recovery. Because GBS is a rare condition, little is known about any golden bullets per se, however I was advised to eat healthily, manage fatigue and to try cycling. I have longed to get back on a bike so his cycling recommendation was very welcome. He emphasised the importance to look after myself mentally and said that it’s as equally important to the physio that I’m undergoing. It is common that GBS contributes to mental illness in young adults thus there is reason for concern. Despite all the positivity surrounding my progress, he did say that the strength in my ankles may never come back and it would likely take another two years before I make my maximum recovery. A slow and potentially incomplete recovery is not new news so it did not hurt to hear it, yet it is a reminder that there is some way to go.
4pm, Saturday 21st July
My life has slowed down considerably since suffering my diagnosis of Guillain Barre’ Syndrome in November. I am sleeping about three hours more each night compared with before, and whist I’m awake, I am careful not to over exert myself. My fatigue shackles me from much of what I would like to do. It’s as if a debt of rest must be repaid at sky high interest rates.
6:30pm, Sunday 22nd July
Slowly it is dawning on me that I may never again be able to play many of the sports I once enjoyed again. That is, if the strength does not return in my legs and ankles. It’s something I try not to think about.