I tend to name my bike rides after songs. No real reason. Sometimes a song I had in my head that helped me keep rhythm peddling, other times a song that just put me in a good mood, more often than not a song I had just heard on the radio. And sometimes its symbolic.
Yesterday, I named my ride ‘Lucky’, ostensibly after the song by Radiohead. That’s what I put on the somewhat eclectic playlist I keep on Spotify at least. But it also came after a period of reflection. For various reasons, I have been doing that a lot lately. On of the reasons the blog has been a little quiet, perhaps, as not everything is there to be written about. It came about due to various reasons; looking back on five years with MS and also an initiative from my revalidation clinic that has led to ‘group sessions’ with other patients. I hasten to add, I am not going to name them or talk about their MS and how it impacts them, suffice to say that it is a roomful of people diagnosed with the same illness (with some differing forms) and, through that, facing different challenges. It is one of the characteristics of MS that it seems to have no consistent characteristics.
All of this led to a short period of selfish reflection. I came to a conclusion from this.
The last five years could have been so different. But I have been lucky.
Lucky that, around four and a half years ago, I was assigned a different Neurologist. He referred me to the revalidation clinic where I underwent Occupational Therapy. My first occupational therapist was very nice and helpful but he was away for a couple of weeks and I was temporarily assigned to different occupational therapist. A German whose name I unfortunately cannot remember. In the first session with him, he gave perhaps the clearest explanation I have received of an issue that impacts me a lot and that I tend to refer to as Sensory Overdrive. Simply put, my senses cannot handle too much input, something like a junction on a busy highway where a couple of lanes have been closed for maintenance. Not all the cars can take the junction and so there are traffic jams. Which is rather like my senses, somewhat compromised by MS. That explanation, accompanied by a simple diagram, was utterly key in explaining what I have to others and how it can impact and also how to counter it. I really believe I am in a better place because of it.
Lucky that I work somewhere where these explanations were listened to and positive measures were taken to ensure I could keep contributing. That means I am still working full-time but very flexibly, with room for rest and a lot of focus on avoiding stress, although stress also comes from doing interesting things. They made the effort and, in return, they get someone motivated and who feels valued. That’s so important.
Lucky to have a Neurologist whose advise is to live life. Carry on riding my bike. A look at the cycling section in this blog will show how important this is to me. The advise was also to stay fit. I haven’t looked back.
Lucky to have a bike shop that had the imagination to listen to someone with a very unique set of requirements and come back with suggestions that work for me. Beautifully light, stable carbon bikes that weigh next to nothing but, strangely, have enormous mountain-bike pedals. Then they go the extra mile by selling my old bike for charity, MS Research no less. They gain a loyal customer but not all can make that effort. The first shop I went to couldn’t. Or wouldn’t. Their loss.
Lucky to have psychologist (or two) who listened to someone who was very confused and helped them find a way to deal with it. And the bizarre guilt that comes with being able to still do things like ride a bike or go to a concert. I still think the psychologist was quietly on to something by letting me come sessions by bike. Accepting what I had whilst still doing something I was starting to love.
Lucky to be referred to a revalidation centre that focuses on keeping a person active in the world around them. Looking at the above, a lot would not have happened if I had not been referred there. My neurologist was key in this. Doubly lucky!
Lucky to have and MS Nurse who I hardly see but how can be reached via e-mail when there is doubt. I am usually in the hospital a couple of days later and the advise is, without fail, reassuring.
Lucky to be surrounded by friends who accept the odd behaviour that can come with my coping ‘mechanisms’. Occasionally earplugs to help filter out background noise which can look a little odd in a restaurant or similar. The habit of popping out for a break during concerts. The occasional sudden cancellations of a planned get-together. Helping when, during a nice drink, my right leg has one of it’s ‘f*ck you’ moments and I end up literally face down in the dirt. Which is, well, humiliating.
Lucky to have a partner who takes so much weight. Like going to the supermarket because I find it too busy at peak time on a Saturday. A small example of so many things.
Something of a run of happy accidents. All combine to ensure that, despite the inevitable background of occasional fear, anger and confusion, life is rich. Many doors were closed with that diagnosis five years ago. But others opened. Pure chance that a set of people from different backgrounds came in to my life, one way or another, to open those doors.
So I consider myself lucky. Hence the name I gave to the ride yesterday. A happy (or lucky) coincidence that it is a good song on my rides playlist. It must be said that the song is perhaps not the happiest, though. It is Radiohead, after all.