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!

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.

MS and the Ability to Surprise – Others

It’s coming up to 7 years since that first, nasty surprise of diagnosis with MS. Looking back at what else was on the list, it could have been far worse. As it is, I am in pretty good shape. Not perfect, but not bad. These days it is often to the turn of others to express surprise upon hearing that I have MS. That surprise is usually increased when they hear how I live my life. Sometimes there is the dread ‘But you look so good!” An off-the-cuff comment that is well meant but which also reflects the lack of comprehension of what can be an invisible disease.

Frankly, I don’t always understand it myself and get it that others will not. This is is certainly not a ‘complaining about everyone else in the world’ post. Currently it is not easy to spot, the only outward signs being occasional bouts of trembling, a slight limp and being excessively careful when walking down the stairs. That will change over time but for now, in all honesty, I’d rather it stays invisible. That means it is often comes as a surprise when people are told and leads to questions Good questions. Answering them helps me to understand what I have and helps me realise that the world is, for someone like me, not a bad place.

“You Still Work Full-Time?”

A big surprise for meany. But let’s be clear, working (and contributing) full-time comes with compromises. In the modern world these actually come easy. I read a lot of complaints about the on-line world and when,I see idiocy mistaken for debate on Twitter, I agree with it! But the fact is that, had I been diagnosed 20 years ago, it would have been impossible to work full-time. Even with the best will in the world. A train full of people is still, sometimes, a terrifying thing. But it’s not something that I need to do very often.

Thanks to the on-line world, I can get out of bed, walk slowly downstairs, log on and start working. An early call with an Australian colleague does not mean getting out of bed at 5 AM to get to the office. I can record the call and play it back so, if my memory plays tricks on me, the record is there. I can have a sleep when I am tired or go for a walk or start late and finish late so I can get a ride in. Subject to the day’s agenda, of course. So important to keep that exercise going. It also means that, for two days a week, it is not an effort to go to the office. In fact, the company is so welcome.

“You Still Ride a Bike so Often?”

A big surprise and perhaps more difficult to explain than working full time. Let’s face it, the amount of time I spend in the saddle would be shocking for a ‘healthy’ person. I’ll give a little leeway on that one!

It’s not just about cycling, though, and I know of many people with MS who are very active. Something I have picked up from the on-line community. This is a surprise to many. It would have surprised uneducated me a few years ago.

It’s good to know the opposite. Important too!

It’s still one of my favourite stories that the top two riders in terms of distance covered in one of my Strava groups (Facebook for people in Lycra) both had MS, me being one of them. Now I have a new favourite ‘active with MS’ story that came from a meeting with friends at a pub around Christmas time. One of my chums also has MS. We were talking about our latest challenges. Hers is to run a marathon, mine is the Amstel Gold Race. Two friends with MS; different versions, different impacts but still the same two letters. Both planning insane physical adventures for the coming year. Deranged. We’re not the only ones, either. Plenty of stories out there.

“Shouldn’t You Rest More?”

This is the most difficult question and comes naturally when I take about how active I am. Because perhaps I should. Just to be clear, most days I have a doze, maybe two. I also make sure I arrange a ‘do nothing’ day once a week. Just read, watch films, listen to music. Write this blog. And still sleep. Nothing too active.

Some days there isn’t a choice. I have to do nothing. Not too often but often enough.

These days will happen. And they make me even more determined to make the most of the good days. Not just with a bike. I love concerts although I am quite careful when I go to these. Never at the front in a mosh pit and near an escape. When the noise gets too much or, more likely, the light show floods my senses, I can step out. Take a break. I love a glass of wine as well. I enjoy cooking. Travelling is great, with precautions. There is enough to keep me busy.

And, whilst I still can, I will enjoy being busy. Alongside that, I know I need to rest, switch off a little. It can be hard but if it means that I can keep the active element of life going, so be it.

Knowing I am Not Alone

The internet has come up a couple of times in this post and makes a good point to close the piece. It is much maligned, after all, but there are benefits as well. There is a raft of material on MS out there. Sift through it and you get sensible, informed information. Sometimes it makes a difference. Increasing Vitamin D, for example. Taking supplements has made a difference to my concentration and memory. Or maybe I just think it does. There is also validation of how I do things. The importance of exercise mentioned above, for example.

Of course, the danger with the web is that you can find too much. Contradictory theories. It can be confusing and nothing beats a good neurologist and medical support.

The main assistance is, perhaps, less concrete. It comes with the voices of others who have MS. Blogs, twitter, podcasts. Many are facing the same questions I do and have similar fears and confusions to mine. I don’t have many friends with this condition and so these other, remote voices are a help. I may not speak to these fellow travellers and will never meet most of them but they are there and their experiences enrich mine, helping deal with my own confusion and the surprise of others.

It’s good to know that others are out there, talking about what they go through. They make it easier for me to do the same.

MS: Should I Tell?

World MS Day was on 30th May. One of the main discussions was around #MyInvisibleMS. Some compelling stories out. I wrote this on the day but delayed posting… so publishing now….

There are many frustrating things about MS. It’s invisibility is an element of that although, whilst at times confusing, perhaps it is also something to be celebrated. Would I rather it were highly visible?

This invisibility, which I have covered before, does however lead to a question.

Should I actually tell people that I have MS?

This is a simple question but the answer is, of course, mesmerizingly complex. So many variables.

At the moment, I am physically in great shape with limited visible symptoms. My trembling is not bad, my right arm and hand are not as strong as they should be but they have also been worse. As this blog mostly focuses on cycling up mountains at the moment it is clear that I am fit.

That said, I can stumble and have had a couple of small stumbles. My coordination issues mean I am noticeably slower going down the stairs than up, perspective a little up the spout. In isolation, though, not noteworthy. Weirdly, I am stable on a bike but walking, especially in small spaces, can be a little unstable.

The main issues for me at the moment are cognitive. Memory and concentration are struggles. There is also the fatigue element. Tiredness which leads to sleep. Invisible but certainly impacting.

Fine if I am at home! But what about in the office or during a busy meeting?Not the best look to fall asleep.

Or I have a sudden twitch and drop something or have a slight fall in a busy place? With people all around me.

What happens when I am talking and suddenly cannot get the words out of my mouth and stutter or sound drunk? In the morning at breakfast when generally I am not drunk….

The way to respond is normally common sense and a bit of proportion. If you are in a shop and you stumble or drop something no-one will notice, just mumble excuses and carry on. An small moment in life that does not need explanation.

Colleagues and friends who you often see? That’s different.

Colleagues you work closely with need to know, in my experience. They need to understand just why I was listening attentively one minute and then falling asleep the next.

Similar with those with whom I will be working over several days. There are bound to be moments of fatigue in such circumstances, it’s better that key individuals, for example a trainer, are aware. No need to always be specific, just take a moment over coffee to say that I have a medical condition that can lead to fatigue and would they mind if I step out for the occasional break? Invariably it’s not a problem, adults are adults.

It is best to use common sense.

There are also times when it just happens. Moments when I suddenly say what is wrong with me. For example, something that happened at Gatwick Airport recently. A blast of the trembles just when taking out the PC and bag of fluids out of my rucksack.

“Sorry, I’ve got MS.”

Despite all I said above, it just came out. Perhaps slight nerves as this was the security desk? Certainly that probably led to a feeling that I should explain what was happening.

Not important, the response was friendly, helpful and….. Adult.

A small example that reveals just how difficult it is to make a set of personal rules about this. I was honest about my condition to a complete set of strangers because of one small set of problems.. On an impulse, contradicting much of this post. And the response was just perfect.

There are strangers who are open, friendly, helpful when they are told what is wrong….

Then there are friends who are not friends anymore.

The point is that there can be rules and preferences for everything. They don’t always work. If I could, I would be honest with everyone who is around me when I have a problem. But this would be too much effort for something that can only be moment and I cannot predict the reaction such a confession will receive from someone who I will probably never see again.

You can spend too much time thinking and worrying.

So, to answer the question of this post, should I tell? I just go with my gut. My preference is to be open but it cannot always be so. I get it wrong and I get it right. More often the former but that is pure luck.

Such is life, with MS and without.