2021: Get that Door Open!

Normally I write a post reflecting on the past year around this time. Reflection on what is good and bad. Did one for 2019, 2018 etcetera, etcetera, etcetera. But I don’t think that I really want to do that for 2020. It was a difficult year. For the world, COVID-19 made it that way. The worst I had from COVID has been through lockdown and generally not doing as much as I would like; others had it much worse and I can’t complain. MS had more impact personally but there has been enough reflection on that. This time I want to look forward. On to 2021.

A Slow Start

But, let’s face it, 2021 is going to start much as 2020 has been. COVID 19 is still very much here and vaccination will take time, although hopefully the rate of infection will be reduced as more get vaccinated. So looking forward perhaps has a realistic start point of March or April 2021. At the earliest.

Looking forward is just not as easy as it usually is. Always a note of caution. Insert ‘hopefully’ before everything written below.

Mountains and Sh*t!

Screw it, though. I am just going to to look forward no matter what the delay.. Of course, for me the act of looking forward involves the bike. And mountains!

It’s not like I stopped cycling in 2020. Luckily the Dutch version of lockdown encourages exercise. Sensibly, solo and no risks that may lead to a visit to an overstretched emergency ward. But the challenges of 2020 did not happen, for obvious reasons. No mass events, very difficult to travel. I have been lucky enough to keep cycling. But I need the challenges. I need that feeling of achievement I get from them.

A flick back through the entries in this blog shows how important they have been. A statement about how MS does not stop me from doing something physically difficult. It is not about fighting MS, that’s an uneven battle and against a foe that…. is invisible and unpredictable. It is about what I can do in spite of what I have. That feeling……

I need the mountains and all the sh*t that comes with it. Training, pain, doubt. Achievement. Col du Tourmalet is back on the agenda for this year. Looking forward to it.

Broadening the Horizon

As said above, though, the issue in the last year has been actually getting to where the mountains are. Travel has changed with COVID-19. Everywhere is further away. When something is gone you realise how much you miss it and how lucky you are to be able to do it during ‘normal’ times. Many, including me, forgot that getting away is a luxury. COVID-19 is reminder of the fact that it should be special.

It will take awhile for travel to reach it’s previous level. There is also the positive side of this in the reduction of environmental impact. We are all going to be travelling less and that holiday far away will be a little more difficult to arrange. It will also be more special, for me at least. The chance to broaden the horizons. It is a luxury and I have been to spoilt for too long.

The Freedom to Do Something….. Or Not

The horizons closer to home have also been more closed off in the last year. I walked past a closed cafe the other day and suddenly found myself thinking that I felt like a coffee and cake.

Not something that I normally want to do. Nothing mysterious but just something that, when it is there, you think you can do it anytime. Suddenly it’s impossible. Then you notice it. The freedom to do something or not is gone. And I would like the freedom to buy a coffee. Let’s face it, they will need all of our support.

Concerts! Please?

Elbow, Nick Cave and the Bad Seeds, Suede, Thundercat, Thurston Moore. Among others. Postponed. I need a good concert. No hidden deep reasoning here. I just need a concert, simple as that.

People

Concerts mean being around people. The friends you meet and catch up with beforehand, all of the fellow concert-goers crammed in to the venue….. Now, everyone seems so far away.

In normal times I am a primarily a homeworker with a pair of days per week for the office. On those two days I have a lot of contact with others, of course. A lot of social alongside the professional. A quick break by the coffee machine to keep the mind fresh. Life is not only work, I miss meeting friends at a concert or a bar or restaurant or at their homes or just bumping in to them on the street.

And then, in the course of one day in March, all that was gone. Even the visit to a friend’s house become a little fraught, a little nervous, even before restrictions came in about the number of people that you could have as visitors at one time. On-line meetings help but it is not the same.

In the end, everything I am looking forward to needs people. Cycling up a mountain, going to a concert, ordering a coffee from someone. I’ll look forward to seeing people again,

Back to Normal?

Even when the vaccine starts to weave its wonders, how long will it be before things return to a semblance of normality? When everything becomes possible again will everyone be ready to go straight back to ‘normal’ themselves? Although some have ignored COVID or dismissed it with some deranged conspiracy theory, the impact it has had on many is fear. The need to keep distance, wear a mask, stay away from crowds. Normal interaction with others has suddenly been a threat, How long will take for that feeling of threat to go away?

Still, after the complexity of 2020, it feels good to simply look forward! 2021, you may have to take your time but get that door open!

MS: Time For A Rest

Sometimes it is necessary to do something that is hard to accept. For me, the follow-on from the issues that I have had is that I should do less. Work less, play less. Time for a rest. It sounds easy enough and the personal benefit is simply enormous. There is some work, though, in accepting it. After all, I have spent the last years pushing through MS, sometimes perhaps pretending that it is not impacting me as much as it is.

Time for that to stop. Time to make real changes, no matter how difficult they are to accept.

Consultation

First thing to say is that I have not suddenly decided to do less on my own and this is the result of a lot of consultation with the medical team at the Rehabilitation Clinic I attend, though I prefer to translate more literally from Dutch and call it a Revalidation Clinic. Otherwise it feels like I am saying that I am in rehab……

It is not just medical opinion, of course. A lot of people close to me also think I have been overdoing it. But medical opinion can be the (friendly) slap around the face that makes you accept reality. Sessions with a physio, occupational therapist and psychologist culminated in a review session led by the coordinating doctor. They had been watching me walk, listening to me talk, analysing my work patterns and reviewing my response to all of the issues that have been faced down the years. And the conclusion was pretty blunt. I am too ill to do so much. I need to do less.

After 7 years with Progressive MS, I knew this day would come. It is still very difficult to accept. I have been trying to carry on regardless, in both work and play. Possibly I have been pretending to accept the progression of my MS. Lying to myself is the emotive way to put it. That is actually quite easy until it progresses in a way that impacts the way I want to live my life.

Acceptance and Reduction

Initially, stubbornness made it difficult for me to accept what I was hearing from those four specialists. I had not accepted from so many people who have said it over the last couple of years so it was never going to be a case of suddenly seeing the light. For work, for example, I said I accepted the day less but why not work 4 days but 9 hours long?

No. That defeats the object. Long days would be exhausting.

It would be 32 hours, either over 4 or 5 days.

Must admit, I got a little upset. It’s a hard thing to hear when you told you should do less.

For all that, though, the arrangements have been easy. My employer has bee 100% supportive of the about the cut of hours. Lots of support and a couple of comments of ‘it’s about time’ as many around me are surprised that I have worked full-time for so long.. After 7 years of support thus response was not a surprise.

The difficult part, though, is actually making the reduction. You see, to me it feels like I am conceding defeat to MS. Letting it win. There have been a couple of comments of ‘I wish I could do that’ when informing people of the reduction in working days. Well meant but it misses the point.

I didn’t choose the reduction.

The impact is not just on my working life either. I need to reduce the amount I cycle, for example, and the amount I walk. Foot drop is impacting both of these actions now. No matter how strong my leg is the nerves don’t always tell it to do what it should. A little scary and something that is forcing change. I have to accept it.

A Change of Lifestyle

Such changes are not easy to accept. In common with the last post it took about 20 drafts before this entry has been ready. To be truthful, the first drafts don’t make for cheerful reading. Because they weren’t. I saw a form that where I am classified as disabled. When it is in black-and-white it hits, so hard. Not something that makes you feel optimistic.

Personally I don’t consider myself disabled. It may be an official classification but how can someone who is disabled complete a 100km ride, as I did yesterday?

Actually, that ride is reflects how I should now live my life and is, perhaps, the route toward optimism. Compared to earlier rides of a similar distance, it was much slower with far more breaks built in. If I felt my leg going I would slow down and stop. Rest. If people overtook without saying hello, something that can really irritate me, don’t try to chase them down but let them go. It doesn’t matter.

What does matter is that I can still ride and enjoy it. Do just as much as could before. Just differently. Initially slower and more careful. Maybe the next bike will be an e-bike? No problem, though I will wait for that decision. And working 4 days does not mean that I make less contribution. In the first discussions with management it was made clear that they want me to continue my role as Graduate Programme Manager. That is such a vote of confidence that the thought of defeat feels wrong.

Do less but do it well. That could be my new motto. Let the optimism flow.

Learning to Rest

Doing less means more time to rest and rest can be many things. It is not always sitting around and not doing much, although there will have to be days like that occasionally. Sometimes rest can be a nice walk with my hiking stick as foot drop seems to happen on 4 to 5 kilometres. There will be room for bike rides, either short and hard tempo or longer and low tempo. Need to get the balance right andI have no choice but to listen to my body. It tends to make itself heard now!

There is a lot to learn. Rest from work is actually quite difficult so far. My first free Fridays have been interrupted by nervous inspections of my phone even though there is ample cover. I don’t need to look at my mail and things go fine without me but….. it is hard to let go. There is also an odd feeling of guilty laziness. I am working on that.

The rest will give me more space in my life, though, and I will learn to embrace that. Books, music, cooking, catching up on old films. Not quite doing nothing but relaxing, recharging. MS means I have less energy than most and I need to use it carefully.

And when I do have energy? Use it! Celebrate it! Just more carefully.

I am still getting used to this new life rhythm and realise just how much I have used being active as an act of resistance toward MS, in work and play. Perhaps I had convinced myself a little that all of this activity would keep MS at bay? I worry about the consequences as well.. What will be the impact on wider activities I enjoy? Holidays, eating out, concerts. What does it mean for my career?

But I realise that these changes need to be made and, after many sleepless nights, it is time to look forward. Giving ground to MS is hard to accept but necessary. It is time to look forward to the benefits, even though they can sometimes feel far away.

The next post will be about cycling. Honestly!

MS: Is This Progression?

It’s taken some time to put pen to paper recently. Or finger to keyboard, to be pedantic. There are two issues behind this. One is that Covid has made life a little quieter. The grand targets for this year are gone, hopefully back next year. That means less to talk about. Who needs another blog about Covid and what it is like to interact with everyone remotely? Seen it, done it. The other issue is progression. Of Multiple Sclerosis. Is my MS progressing, or isn’t it?

Progressive MS is meant to progress, after all. Progression here means things get worse, not better.

But this is MS. Nothing is simple. I have leant that!

Symptoms, Symptoms, Symptoms

Forgive me but, for something so important, I can sound a little wearied when talking about symptoms. But, it can’t be helped. When you analyse everything you do for signs of MS it can get like that.

‘Oh, more symptoms. Joy! Which hand is trembling n0w?’

It’s a very fine balance between controlled analysis, paranoia and complete indifference. What to ignore and what not to ignore? What is new and what is same old same old?

It is always new symptoms that focus the attention. Especially unusual ones. And scary. My left hand was under a hot tap and…. the water didn’t feel hot. All that I had was an annoying tingling feeling. Something new. Alongside this came an alarming worsening in walking and – horror of horrors – the right leg started to weaken when cycling.

F*ck everything else. Weakness when cycling? That is bloody terrifying!

Let’s not be too nonchalant, though, this is alarming stuff. Combined with cognitive issues increasing and there are clear signs of progression. Fearful. Worrying enough that my regular MS Nurse and Neurologist were contacted. An MRI resulted followed by a week’s wait for the results.

Which are, after all of this build up…… (cue drum roll)…

Inconclusive.

I won’t get in to detail but the neurologist and radiologist don’t agree about a new lesion that has been found. A second MRI with Contrast Agent introduced suggested to the radiologist that here we had a potentially different type of lesion. So possibly not Primary Progressive but another form. This could be good.

But nothing is certain at this stage.

How do we get certainty? Another MRI. But lesions take time to grow or not to grow. So we need to wait to give it all time to develop. So the next MRI will be a year from now. With that will come certainty. Or perhaps it won’t.

Uncertainty

I have written about twenty versions of this post. Rejected them all as perhaps too downbeat. After all, this development could be positive. A different form of MS that can be treated. Remitting Regressive? The fact that some of the symptoms, such as not feeling hot water, have gone are indicative of this.

But the weakness on the right side continues to show progression. Walking long distances is becoming more difficult, there is numbness after long or fast bike rides and the right hand can really have a mind of it’s own. I will whisk a salad dressing and finish and the hand….. well…. it carries on whisking!

‘No, leave this to me! I like it! I haven’t had this much exercise in years!’.

Nothing is simple, though. The if’s and buts that started my ‘MS Life were back again. The issues I had may also have been caused by illness in the beginning of March with a fever, something that impacts MS. No, I don’t think it was Covid, before anyone asks. I self isolated just case but… nothing is sure.

A Different Time

There may be a year to wait for certainty and this may be a return to a past time. But it isn’t. When this all started, we were totally alone, my partner and I. Now, it’s very different.

I have a rehabilitation clinic to help me. The physio helps me improve my walking learn how to better balance energy so the right leg doesn’t give up on me. The long distance cycling continues! There is occupational therapy, reminding me that is so important to plan the day. Same for everyone but I just have less resource to play with. And there is a psychologist because….. well, it’s not that easy. And a rehabilitation doctor takes all of these strands and gives them a structure. A lot of support.

The difficulty will come in deciding how to go forward. This could be progression. That is what happens with Primary Progressive MS. Or it could be different symptoms. That may only be known a year from now after this next MRI,

And what is different? In the end, what has changed?

No matter what, and this is where this post has been a real struggle to write, I will need to make choices. Working less, exercising less, or doing both differently. The confrontation comes in that MS forces me to make these choices. All the specialists in the world are helping me and I have all the support I could ever need.

But I still need to make choices. And I don’t want to.

Going Forward

I like the posts in this blog to be optimistic. That is not always a reflection of how I really feel, to be honest, but it is important to focus on the positive. Even with all the support I have, from medical specialists and also from those around me, the fact is that change has been forced on me and will continue to be whether I like it or not.

The trick will be forcing myself back in to the habit of making the best of the good days. Enjoying them. Accepting that all days will not be good is part of that. But I think I would rather write about cycling up a mountain.

I’ll just have to wait awhile.

In the end, what has changed with my last MRI? And what will change with the next? We’ll have to see.

All is Change

I was reading another blog the other day which was about keeping blogs. I was bored, I will say that now as a defence. It was one of those ‘you must do things like this and don’t do this and TARGET READERS and pay attention to your bounce rate’ and a lot of other mouthy instructions. Rather like some blogs I have see about cycling saying how you should wear glasses when riding. Must be over the straps of your helmet, apparently. People were getting very passionate about it. Can’t say I have ever given a sh*t. Like many blogs, probably including mine, it just doesn’t mean much. I am not going to change how I do things. Screw bounce rates, whatever they are.

So, in a spirit of inconsequential defiance, I am going to ignore one of the main instructions from this blog about blogging. Apparently you should never say sorry for not having posted for awhile. Well, screw that, sorry I haven’t posted in a while. I doubt if anyone is on the edge of their seat, fretting about the lack of activity here. But it is nice to keep things going, for me at least..

Frankly, though, writing posts has been a little difficult. Feels a little trivial, perhaps? It is so obviously a tumultuous time for so many, thanks to the Corona Pandemic. Changes are forced. I am lucky in that I work mostly from home in any case. It’s no issue to do that more. I miss seeing colleagues and friends but it is not a hard cross to bear. The fact that family and friends are in a different country does hit home, especially when some are working in the medical profession. Older parents as well. Worry increases, that’s normal.

From the point of view of the blog, though, it was difficult to know what to write about. All those annual challenges that are so important to me? Suddenly they are impossible. What is there there to write about when all is change?

Carrying On

There is no point in feeling sorry for myself around this all, though. Worried? Yes, of course, no problem. That’s normal. But, for me at least, there is a big difference between worrying and feeling sorry for yourself. Worry can be for others as well yourself. Feeling sorry for yourself? That’s selfish.

And I do worry. But, because of MS, I am actually pretty seasoned at Social Distancing already. Shopping when it is quiet is just….. normal. Not going out all the time? Fine. And, I must admit, on-line shops are a new wonder, at least for me. Only interesting, small ones, though. A nice wine shop in Amsterdam. Jeff Bezos doesn’t need my money yet.

And do I miss trains? No, not really. I miss seeing other people at the end of the journey but the journey itself? I am doing fine without it.

It’s all a non-issue for me. How could I dare feel sorry for myself? I am just carrying on as usual albeit a lot more carefully.

Why?

Because to carry on normally would be far too flippant. Too many people are impacted. The virus itself is terrifyingly inconsistent. It can be mild or deadly. I am in a risk group, according to some authorities at least. This is because the Corona Virus often, though not always, leads to fever. This will hit someone with MS hard. So I need to be cautious, as everyone should. At the same time, I need to keep my exercise going, that can’t change. It is too good for my MS, not to mention my general resistance. It’s important to keep cycling going and I am lucky I can do so. I always think I am lucky, in spite of MS. It’s just time for some small changes.

Change of Targets

In many countries, you cannot leave the house unless for essential reasons. Luckily (again, I am lucky), in the Netherlands, this is not the case and we are allowed outside to exercise. For me, that is where the bike comes in. Things cannot be the same, though. I hardly go out at weekends now, purely as it is too busy. I prefer to ride early in the morning during the week, using my flexibility to work later in the evening from home. It’s a natural reflex for me. Not everyone has my flexibility so I will leave the roads to them during the weekend, everyone has to get outside. As long as they wear a helmet and keep their distance and don’t go out in a group, all fine.

Note I have seen all three on my one long weekend ride. Why I decided, no more.

I mentioned above that my challenges have to change. Of course, the Amstel Gold Race has been cancelled and the Pyrenees trip now as well, including the second target of Col du Tourmalet. It will just have to wait another year. I like to have targets, though. Next year’s are easy. Another Classic, perhaps the Amstel Gold Race, and Col du Tourmalet. Sorted. Nothing important in the great scheme of things. Still, I like to have a challenge for myself.. And, in circumstances, this needs a bit of imagination, which is fun.

So far I have come up with one target. When restrictions are a little less I have found a nice route relatively nearby that will compose of 1,000 metres of climbing. In Holland. Not bad. I do like climbing. Add around 130km of riding and this becomes fun, something I need to build toward. There is always an element of risk in new routes so I will wait until restrictions are lifted a little and the medical service is less stretched before taking the challenge. The last thing hospitals need right now is a d*ckhead in lycra who didn’t know the route well and crashed. I can still take long rides of around 100km but on well ridden paths using the odd day off so I can go during the week when it is relatively quiet.

Keeping fit is very important when dealing with MS and I will try to keep the riding going with the new target as a motivation. I just have to keep my distance, that’s all.

Comfort

In the end, this is all trivial. Of course it is. When times are exceptional, frustrating and confusing, there is comfort in the trivial. Like updating this blog or riding the bike. Unimportant but they matter to me. Fussing through my cookbooks also matters. I am not cooking for friends at the moment but I will look forward to when I can. A good time to experiment on my long suffering partner.

Without the trivial I could worry myself to a standstill. That would be wrong, an offence to those who have been more impacted, whose lives are at a standstill whether through illness or economic issues. It is all change at the moment. There may be more change coming for me and it may not be pleasant. It is impossible to know the future. So I will just keep enjoying the present. Something that I have learnt in the last eight years.

Including something as trivial as this blog.