MS: The Eleven Year Itch

‘The Seven Year Itch’ is not one of my favourite movies. Billy Wilder made so many others that I love. ‘Some Like It Hot’, ‘The Lost Weekend’ and ‘Double Indemnity’ among others. I just did not have same connection with ‘The Seven Year Itch’. That title, though… I heard it the other day and it struck me. A long-lasting itch, something around dysfunctional relationships in the context of the film. Reflecting my dysfunctional relationship with Multiple Sclerosis? An eleven year itch that is just getting more and more difficult to scratch.

Anniversary

Some context. Eleven years. August 23rd, 2012 was the date of my preliminary diagnosis for MS. There followed a year of medical messing around before the final diagnosis of Primary Progressive was made. Not my favourite year.

I have written a fair amount on Primary Progressive over the years. A lot of it does not make for a cheerful read. Writing about my body attacking itself and the effects of that is not that uplifting, to be honest. But I have been dealing with it, taking on the mountains of the world and long-distance rides with my bike, working, getting out and about. The itch was not that bad. It could be relieved with a little scratch.

Increased Progression

In the last couple of years, though, the impact of progression has increased. Walking further than a kilometre unaided has become quite a challenge. Cycling still goes better than walking and I get good distances but don’t really have the power for sustained climbing anymore. Col du Galabier, the target for this year’s cycling adventure, was just not possible. I could not even get up a steep hill at the start of the route.

Ocrevus has given some hope of stemming lesion growth. An MRI in August suggested that this happening with the online report stating Status Quo Ante, or things are as they were. Good! Something to build on. At least, that iswhat I thought. My neurologist then explained that the lesions had already done significant damage and some of it was, in the case of the black hole lesions, beyond repair. Some lesions do repair themselves to an extent but, with black hole lesions, the underlying neurons are effectively gone. With such damage, symptoms will still progress.

Reaction

I found it hard to deal with that update. It is easy to talk about acceptance until you actually have to accept something. Then it can feel… not good. Especially if you raise your expectations too high against your own better judgement. I was guilty of that with the belief that stable lesions meant stable symptoms without considering the impact of damage that was already there. I was a little down. Listening to Tom Waits, especially the early stuff, is good for these moments. Though maybe ‘good’ is the wrong word.

Shedding Some Light

Some facts, some research, shone a bit of light on the situation. The average patient with PPMS needs a wheelchair around twelve years after diagnosis. Eleven years for me and still quite active. I will take that. Ocrevus will hopefully stabilise lesions and through this help arrest some symptom development despite the impact of damage already done. The scorched earth in my brain is sometimes how I think of it.

I also have a new physio. She specialises in neurological conditions like MS and emphasises that exercise and activity are key in responding to such conditions. It seems all that cycling was not so crazy. But walking and exercises to strengthen my weaker right side also are also important. If I don’t try to walk then the situation will get worse so I need to walk, a little at least. All this needs to be balanced with rest as I simply have less resource to work with. Targeted exercise and appropriate rest. The rest part does need work, to be honest.

Changing the Tune

Positives mean it is time to change the tune, much as I love Tom Waits! ‘I Get Along’ by The Libertines feels just about right. Feels like I am telling MS what it can do with itself. It is not going away but there are ways to reduce the impact. Those mountains are still open with an e-bike and managed one on the Galibier trip. A good feeling! If I cannot walk more than a kilometre unaided? Well, get some aids! Specifically, a collection of rubber bands and hooks in my shoes that pulls my foot up, relieving the dreaded foot drop. Now I can walk further than one kilometre. Maybe with a walking stick and couple of pauses as well but still further. The world no longer feels quite so worryingly small.

Edging Forward

Still, truthfully, I am scared sometimes. Scared of what is coming. Another interesting input from my physio concerns the impact that fear can have. Worrying about things that could happen… Wary is one thing, being scared is another. It increases stress which in turn impacts my physical condition. This brings home that I am not as resilient as it appears sometimes. I fear personal isolation but also fear what is out there in the big world and how I will deal with it. Fear that feeds MS.

But there are still enough things to help me over that fear and I am not alone in this. My wife. Family. Many generous friends. It is nice to still go out for dinner or a beer or glass of wine or a concert or the cinema and know that I have friends who don’t care about the rubber bands, the stick and the stumbles. They are just there and I am glad they are. It helps. Forget the fear and enjoy what life offers.

Despite all the good things that itch will continue to get more irritating. I often wish it wasn’t there, I really do. It’s going nowhere, though. So best to keep living with it as best as possible. Keep adopting. Edging forward cautiously is more interesting than just sitting still. I am sure of that.