2019: Closing the Door

2019 is coming to an end and many people will reflect on the past year. I will do the same. Nothing scientific. Just my personal high and lowlights. Very personal.

Highlight: Passo di Gavia

2019 has, physically, been one of my strongest years for a long time. And Passo di Gavia just embodies that. One of the most exhilarating days I have had on a bike. Not because of speed. Climbing is naturally slow and my descent? Frankly, laughable! That’s not the point, though. Constant effort, exertion. Some protest from my legs, pain on the left and emptiness on the right.

But to climb up so high that you can lean you bike on a snow drift? What. A. Feeling!

Breathing that cold, clear air. Looking a long way down and realising that it was only under the power of your own legs that you got there. Sorry if I am little proud. Ventoux, Stelvio and the Mendel Pass were all climbed this year. But Gavia stands out for me.

And a selfish highlight. I kept seeing an Italian tour guide with a group of British cyclists, some of whom I had overtaken (!) on the way up. A lot of waiting around for him although, to be fair, maybe his group had done treble the distance I had. I should not get cocky. We started to greet each other during our frequent encounters. Friendly. He was at the top of Gavia when I arrived and saw saw me get off my bike. Then he saw my pedals….

‘YOU DID THAT ON FLAT PEDALS?’

He was pretty incredulous, told me I was mad. I smiled, perhaps enjoying the moment a little. Anyway, my pedals aren’t really flat. Small pins that give me good grip. I wasn’t going go tell him that, though.

And I think his group were just climbing Gavia. I was much faster than them. Sod it, time to be cocky!

Lowlight: Holes in My Brain

Physical strength is one thing. Mental strength or, to put it better, cognitive abilities are another. These were hit hard in 2019. The side effects of the lesions, what I call the holes in my brain. These were a little more noticeable in the last year. Things that were quite easy are becoming more difficult. Not impossible, but more difficult. It takes more of a mental run up to do something and sometimes I need to be left alone completely. Otherwise I find it difficult to concentrate.

A small example. I am reading a newspaper article and someone asks me something. Cue a train wreck in my mind. A locomotive hurtling in to a solid brick wall. It takes a couple of moments for the mind to get back on track, though it feels like an eternity. After all of that those tracks may be been damaged. Eventually I get my thoughts in order but it can be challenging.

Especially if I need to say something after all of this.

Highlight: People Management

I don’t really mention my work in this blog. There’s enough to talk about and work is something that belongs somewhere else. LinkedIn, for example. I mean, I do like my work but it is possibly not the most exciting thing to read about. Fully loaded FTE cost anyone?

But I will make one exception. 2019 saw me become a people manager after taking over the regional Graduate Programme at Juniper Networks. A small team reporting to me, partially at least. I am their line manager but not their assignment manager so I don’t decide what they do on a daily basis. My role is more focused on their development, skills and career wise, and supervising their rotation within Juniper. I am also the first port of call for issues and am responsible for their general happiness.. Already saying more about work in a blog than I ever thought I would.

So I am now responsible for seven bright young people, two of whom I have recruited. Well, mid-20’s. Not that young, really. It’s exciting. Energising. It led to some compromises in my work, also related to MS. More on that below. But to be honest I never really wanted to be a people manager. A surprise to me just how much I am starting to enjoy it.

Lowlight: Progression

Forgetting what I am talking about. Unable to get the words out of my mouth, When they do come out, they come out in the wrong order. Forgetting what I am doing. Hell, my memory is generally horrendous. Getting overwhelmed by the terrifying experience of going to a busy shop or taking a train during rush hour. Walking around a room with a lot of furniture and tripping over them. It’s all part of life with MS and none of this is particularly new. I have certainly written about them in the past.

In the course of 2019, though, some things have gotten slightly but noticeably worse. The cognitive issues are an element of that alongside that small list of problems above. General clumsiness, slightly more trembling and a slight increase in my limp can also be added. All signs of a small progression in my MS. It is Primary Progressive after all. The plan is to keep that progression as slow as possible.

Highlight: ‘Man’s Got to Know His Limitations’

Strange to start a section on the highlights of the year with a quote from a Clint Eastwood film. Not even a very good one. Unforgiven, that’s a good Clint Eastwood film….. but a quote from that one would not be very positive…. There is a context, though.

In the light of the progression of my MS I needed to learn my limitations. I found it difficult. It meant admitting that I am ill and that this illness means I cannot do as much as I would like. Professionally and personally. Limits needed to come in. My cognitive issues mean a lot of tasks are more work for me even though I have less resources to do them. I need use my resources carefully.

So I had to admit my issues and limitations. All manner of people are willing to help but they have to be told, they cannot guess. And I have to tell them, admit that I cannot do as much as I would like. That’s not easy and it took a couple of appointments with my Revalidation Doctor (still not sure what the good English is, in Dutch the title is Revalidatiearts) and a lot of advice from those around me to finally be honest and make that admission. Difficult because there is a feeling that the battle is being lost. Which it isn’t. Just a small tactical withdrawal to regroup and come back.

Highlight: Keep Rolling

Let’s close on a high. Again, physically 2019 has been brilliant. Cycling is behind that. I know it. It’s been the driving force behind keeping my MS under control. This year was possibly one of the strongest in the saddle yet. 10,000 kilometres and, within that, 5 big climbs. After every ride my mind is fresh, clear. Better able to cope with the issues I have mentioned above. The ideal day for me is an early ride, then take on whatever the day has, work or play, and then a short sleep in the afternoon. Not possible every day, of course, but as often as possible.

Of course, I still can’t quite figure out how I can be ill and yet still fairly strong on the bike. But, sometimes, it’s better to just accept the good things. And, anyway, I know I am not the only one.

Closing Out

In reflection 2019 has been a difficult year where I had to make compromises with my MS. That’s the main drive of the lowlights. But then I look at the highlights. My biggest fear of MS is that my world will get smaller and, to an extent, it has. That’s inevitable. I can’t do everything without consideration.

The highlights, though, reflect that I am learning. Making some compromises has kept my world growing, enriching me with new experiences. I just need to plan carefully. That’s a small price to pay to keep doing so many things, staying active. It helps me marshal my resources and use them wisely. Closing out, 2019 has been a year of lessons. Looking forward, 2020 will be the year that I benefit from what I have learnt, That’s my plan in any case.

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