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.
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!