The turning of the year. A natural boundary, a time where many people will take the chance to reflect on what has been and also look forward to what is coming. Well, I do at least. Thats what this post will focus on. A big change that has been planned in 2022 and will come in to place in 2023 and how I responded to it. Which has not always been perfect or sensible. I am only human, after all.

Two Years

The big change started because I have been ill for two years. I know, I was diagnosed in 2013 already. But I officially reported sick in 2020, necessary for my working week to be reduced to four days in response to a medical recommendation. The significance of the two year mark here is that it heralds an official assessment of my ability to work led by a Dutch Government agency responsible for employee insurance, the UWV. Quite often a dry process of characterless assessments and bureaucracy that ends with someone being told that they should continue with a four day week or go back to five days.

So that made the recommendation in my case somewhat….. surprising.

From January 1st, 2023 my working hours will hours reduce further. Twenty-four hours a week. Certainly not what I was expecting. Or what I wanted to hear.

Decisions

I have written enough about the feeling that my MS is progressing. Well, the assessment process was not based on feelings. It is based on hard, cold facts. I have nine years of hard facts. MRI’s, Spinal Taps, consultations with Neurologists and other medical specialists.

The surprise in my case came through the presence of a bit of humanity amongst all of this cold, remote process. One coordinator who took all of that information, recommendations and assessments. And looked beyond it, to the impact on the person who was the subject of the review. In view of continuing progression, his conclusion was that a thirty-two hour working week is not sustainable, let alone forty hours. Twenty-four hours would be best. More rest, more time for exercise, for life.

Sounds great! But when I was told, I was stunned. A meeting with HR and my manager, not normally a combination that is positive. There was nothing negative, though. Perhaps a little apologetic because they knew what my reaction would be. If I had the choice, I would still probably be working forty hours a week. Not because it is healthy or good for me but because I am stubborn, not wanting to give any ground to MS.

To hear the recommendation felt like a defeat. MS was starting to win our personal war. No way that I would make such a decision. No way! There is no room for concession. None!

That is why it is better that other people made the decision.

Giving Ground

I did not like it. Did not want it. Wanted to reject it but could not. Otherwise, if I got worse again, the whole two year process would start again. Maybe this time there would not be the human element of that coordinator. And all the administration. Not to mention some appointments explaining MS to…… someone else. Someone who did not read the medical records.

It is time to accept the recommendations, not matter how reluctantly. I am ill and have to work less. Make the concession. Accept the change.

Accepting that change is still an ongoing activity for me. The fact is it is a strange feeling. I am ill and yet, earlier this week, I went to a restaurant with friends and enjoyed it. Good food, good company. If I am ill, should I not be at home, hiding? Shivering in fear of what is around me?

No, of course not. Such a thought is pathetic. Unbelievable that I can think this way after living so hard to prove the opposite is true. Illnesses like MS don’t got away. Still, I hate saying that I am ill.

So this is where the need to fight does come in. The main fight in this is not with my illness or anyone else. It is with my perception of myself. It is with this stubborn, pig-headed individual who will give no ground. Now he has to. Other people told him that he had to. They look at the near on nine years of records, medical checks, MRI’s. They tell me simply. Make the concession and work less.

Accept this gift of time and make the most of it.

Opportunity

The realisation that this is a gift came though personal reflection and discussion with those whom I trust. What a great chance this is! My work will change to something very people focused, coaching and mentoring. Important to feel valued and I actually do. Important to still engage with people. To go to an office and chat. I will do it less but less really is more. I was worried I would become more isolated through working less. How pointless was that? Indeed a lot of worry about giving ground has been fruitless, a waste of effort.

Just learn to accept that gift of more time. The opportunity to use that time.

And accept that, once again I have been so….. lucky. That coordinator was right person was in the right place at the right time again. Pure chance. It can be so different.

This is a wonderful chance to spread my wings. More time and I am still pretty fit. Time that can be used! Time to learn to bake bread, time to take a train somewhere different and take a (short) walk, more time for music, which I will write about this year! Not that it matters….. More time to rest, good rest, watching birds feed in garden while dozing. More time for something new that I haven’t done before. Nothing crazy or dangerous. Just new. Not sure what. Not a bull run or anything mad like that. Would be a bull stumble in my case anyway. A man’s got to know his limitations.

I have the feeling sometimes that MS is making my world smaller but there is still so much to do in that world. I am looking forward to taking the opportunities that time will give me.

Of course, I will ride a bike as well. Some things won’t change.


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