A Life of Constant Change

It has been difficult to write recently. There are actually some pretty nice reasons for that although one is not that nice. Dealing with the constant change through Multiple Sclerosis. Changes in my mind, my body, my nervous system. Well, I have talked enough about accepting this. Now I finally am. And with acceptance comes openness to old, much loved pastimes as well as new hobbies and new ways with familiar pastimes. A lot of change.

I just need to find the words to write about all of this!

Where I Am Now

Some perspective first. MS is here to stay. There is no cure although there is research ongoing. It is just not something to count on. The best hope is stability and that is never going to be 100% perfect. The lesions have already done a lot of damage and, even if their growth has hopefully slowed through Ocrevus, that damage means progression of symptoms will continue. It will never be reversed.

That is old news, though. Time to get excited again.

Getting Active

The excitement comes with hopefully building on the stability of lesion growth through Ocrevus. That means work, exercise. I have mentioned my new physio who emphasises the importance of staying active with MS. As active as I can. The nervous system may be shot but the muscles are still strong and have, in a sense, a memory for movement. That’s how my physio puts it. Staying moving and active, walking and cycling, are as important as ever. This is not going to be ultra long hikes or the huge cycling adventures of the recent past. These are the small walks locally that I do or cycling in search of different adventures.

Alongside this I am being encouraged to stay mentally active. I have already mentioned reading. This blog as well. And there are new adventures. New activities that I am just starting to discover. Keeping the mind active, even in its slightly wrecked state, is of huge importance. And I will write about them! Just finding the right words!

Back on the Road

So what about former pastimes? I have mentioned cycling and walking already. Travelling is also something I enjoy and still need to do, indulging my wanderlust and keeping a semblance of independence. My first city trip of the year has been to Lille. In many ways, perfect for me. A small city with good public transport and great connectivity with Uber. The challenge came in those beautiful, cobbled streets. I have been walking up to two kilometres unaided recently but even with my trusty walking aids, a walk from the station to the hotel was a challenge.

The key is to take help, accept that I need to compromise. I was in Lille to see a close friend. His arm gave the stability that my walking stick could not. Managed ten thousand steps in one day! But with lots of breaks and solid rests at the hotel before an amazing evening meal. I must admit I felt very content on the train journey home.

Learning

There was a kickback. Fatigue hit very hard the weekend after my return. That Saturday was spent lying around and sleeping. A classic old brick wall day. The fact is that I don’t have the energy to live how I used to. A day on my feet will take enough out of me. Add to that a gourmet meal and copious amounts of wine and I hit that brick wall.

That doesn’t mean stop, though. It means learning. Perhaps I made a mistake and did too much? Truth be told, though, making that mistake was so much fun!

Enjoying What I Have

Going forward, compromise is the key. Making the most of less and making it different. Trying to get a little stability into all this change. I overdid it in Lille but still loved the experience and learned from it. Indeed, I am writing this from Maastricht. Another gourmet weekend, just a little less of everything. Lessons learnt.

And learnt well. Using all the conveniences of modern life to the maximum. Public transport, E-Bikes, Uber and walking aids are a part of that. The arms of trusty friends are also an important aid. All this means concerts are very much back on the agenda and trips to cities like Rotterdam, Amsterdam, Haarlem and Leiden are enjoyable again. There are also so many things to do. New things that excite or old habits that I forgot how much I loved! Change is not that bad.

Embracing Change

The tough part in all this is managing my resources. Having enough energy. And finding the words to describe these new adventures and rediscovered treasures. The problem is I am simply not sure what to write! It is personally easy to write about the adrenalin of cycling up a mountain. I need to find the words about new experiences and also the compromised joy of activity like riding a bike. Perhaps I have also been just too busy enjoying them to write about them! Hence, this small gap, not some sort of writer’s block. Just more to talk about and not sure how to talk about it! It can also be quite difficult to type sometimes when my right hand goes into spasm. One fingered typing like a small child.

So time to try voice dictation applications? That’s what my physio advises and so far the advice has been good. Just another change, another possibility from modern life. I am lucky to have so many ways around the limits of my condition that keep access to so many exciting adventures. Now I just need to find the words to describe them! And have fun doing it!