My father had kindly set my bike up on the turbo trainer to help aid my return to cycling. Can’t wait to be back on my bike, rolling up and down the woodland hills as our dogs run along side!
3pm, Wednesday 1st August
Before I can travel to my girlfriend, Alex’s house by myself, I need to be able to take the trains from Haslemere to Andover independently. So, in preparation for a journey I hope to make, yesterday I took the train with my siblings from Petersfield to Portsmouth. In Portsmouth we had dinner, watched The Incredibles II and took the train home.
When the train pulled into Petersfield station, the step up into the train was much higher than I’d hoped and expected. First, I attempted to step up using different combinations of the crutches and handles but realised the step was beyond my ability. So, I crawled into the train on hands and knees, pulled myself up onto a seat and had Isla and Max (my siblings) carry in my crutches. On arrival at Portsmouth Harbour, getting off the train was much easier. But the walk from the platform to dinner and the cinema nearly killed me. When unstable on feet, a bustling environment can be quite stressful.
Incredibles II gets the thumbs up. Walking back to the train didn’t feel as long, for we weren’t in the same rush as before. On my first attempt of trying to board the train, I nearly fell backwards but managed to catch myself with my crutch. A kind guard offered to help me up but I declined. Usually when someone tries to help me by holding, lifting or pushing me, it does more harm than good for I can’t predict their movements and I lose balance. On my second attempt, to my relief, I made it up on two feet.
We got home late at 10:30pm, thus exhausting me for the today. I was too tired to participate in todays family activity (a boat trip), instead using the day for rest.
5:30pm, Thursday 2nd August
I’m relieved to have stayed at home yesterday. Instead of going on the boat, I was able to catch up on much needed rest. I was told last night by my returning family I would have found it difficult to board the boat anyway, let alone climb out of it. In truth, each time I leave the house there are challenges, some have solutions, some do not. Boarding the boat would have most likely been the latter.
7:30, Wednesday 8th August
Finally, my girlfriend Alex has returned from her family holiday in Europe. She was only gone for two weeks but it felt much longer. I struggle to comprehend how I will feel when she’s travelling for the two months in Australia until I fly out to join her.
She came over to mine on Tuesday and on Wednesday, we went up to my bedroom for the first time in over a year. My bedroom is situated on the top floor of our house with a challenging staircase leading up to it. With my mum in front and girlfriend behind, I was able to scale the stairs.
For the first time in a year and two months, I entered my bedroom. It was tidier than I had left it. Old artwork, sporting achievements and other souvenirs were neatly tucked in the corners. Looking through bags and cupboards, I discovered bountiful amounts of sports kit from my past life, pre GBS. Brightly coloured ski jackets, worn out cycling kits and scores of rowing lycra littered the dark edges of the room. A gentle reminder of how great my life used to be.
Alex lifted out my old sketch books from AS art and we browsed through. Pages were filled by images of dilapidated buildings and distressed portraits. Images from a different time. A time where standing out was a challenge and my body was capable of anything.
7pm, Thursday 9th August
Alex left early this morning for work and I lay in bed snoozing until I had to get up.
At 10am, a gentleman named Xavier came to work on the research stage of a GBS documentary he plans to make. Xavier’s most recent documentary series, Drugsland, received a BAFTA nomination for the second episode. Drugsland is on the BBC iPlayer and I would recommend watching it. Xavier himself has a form of Guillian Barre’ and is looking to raise awareness for the associated conditions.
Inspired by his plans to make the documentary as truthful as possible, I made it clear that I wanted to be involved in its making.
Xavier left at midday, I had lunch and a much-needed nap for a busy afternoon ahead.
In the afternoon, my friend Felix and his girlfriend, Issy came. After lunch, I challenged Felix to a swimming race where he had to do ten lengths whilst I did just four. Annoyingly, he still won.
11:30pm, Wednesday 15th August
Today in physio, I had a crack at dancing. The Idea was that we would attempt salsa, so we kicked it off with ‘basic step’. Trying to up my game a little, I went for the spin. All focus on the correct step went out the window and I ended up attempting whatever dance move would help me stay on my feet.
Having learnt to dance pre GBS, I found dancing easier than many of the less complex exercises I often attempt in physio. But maybe, just maybe, it’s because dancing is fun…