Diary Of An Author With Multiple Sclerosis (Including A Monty Python Sketch!) – November 2020

Longer than I imagined today (Jaunt reference). Jump in where you like:
Introduction | Writing | Monty Python | Learning Point #1 | Writing Pace | Learning Point #2 | Health

This is the first diary post I’ve done for real in quite some time. My last Diary post was technically in September, but that was more a post for myself to get back into the swing of things and to hint at some of the difficulties I’d been struggling with, not all of which were MS related.

Does this post find me in a better place? Undoubtedly, as I’ve felt able to continue posting to this blog ad have interacted with some of the many other excellent blogs that are suggested to me by ‘Reader’.

One of the main contributors (aside from my wife and family) to this journey back towards some semblance of ‘normality’ (whatever that is these days), has been CREATIVITY. To that end I wrote several posts on this topic which you may find of interest:

Creativity – How to be more creative
Creativity – The health benefits of creativity
Creativity – Why stepping outside of your comfort zone is a good thing

There is still another post rattling around my noggin (does anyone still use that word?), but I’m sure it will make it’s way out eventually, for now, on to this first ‘real’ ‘Diary’ post for 2020, as usual, writing first…


Getting sat back down to restart this process has been over 12 months in the making, and what I’ve learned is to temper my expectations. I refer you back to an earlier post on setting realistic targets for yourself.

One day into the resumption of my writing I found that very quickly I wanted to write a novel, publish another collection of short stories, write a blog post every day, etc., but just as quickly I discovered that wasn’t realistic and led only to frustration at my inability to do the things I wanted to do.

Take it from me, a seasoned veteran, that if necessity is the mother of invention, then frustration is the mother of not getting things done.

I didn’t want that to happen, so I had to be a bit (lot) more realistic with my plans, and even these plans will need to be revised at some future point.

I set my goal at getting my next collection of short stories ready for publication. I had already written several stories over a year ago, so I at least had a starting point, but when I looked at these stories, I noticed one thing:

  • The stories lacked depth. The characters were only just realised and needed fleshing out.
  • The settings needed to be made more real and by that I mean they only had the briefest of mentions and would need fleshing out.

Okay, two things.

  • The language was that of someone that hadn’t read enough. I’d read, obviously, but during the intervening year, I read a lot and read as an author, taking notes about how scenes played out, how characters were introduced and developed, etc.

Okay, three things.

So I pulled out these stories again and started rewriting, armed with this new information. I have rewritten one, which now comes in at almost 20k words, so hardly a ‘short’ story. Editing is next on my to do list, and I expect that total will drop as I cut out a lot of the unnecessary prose, but that’s okay. It doesn’t feel like wasted time, wasted words. It feels good to get the words onto paper and now have something that I can work with.

Learning Point

Worry about the finer points at the end. I felt that getting the idea out of my head and onto the paper was more important in the early stage.

So what’s next? I have several other stories needing a rewrite, so they’ll be next. For a moment I was tempted to go back over some of my much earlier, published work, but rejected that idea, as tat work needs to stand alone as an example of where I was in my writing at that point.

Writing Pace

This is something that has troubled me for some considerable time, but it still boils down to setting realistic targets for myself. I know some authors who write all day, early morning, late night, but I’ve never been able to do that. When I was working, much of my daily energy was taken up with my 9-5 job. MS provides me with a limited pool of energy that meant although my mind was willing, my body was not always willing to comply. I was unable to match the pace of some of the more prolific amongst you. More frustration.

Now, I have much more time on my hands, but much less ability in my body (see below) so I still have about the sae capacity for writing, even though the available time has increased, which is actually MORE frustrating.

The answer was those SMART goals. I set myself a ridiculously low target of 250 words a day. That way, I spend more time being satisfied because I hit my target, rather than frustrated because I didn’t. The reality has been that I have been able to write more like 1000 words a day, sometimes as many as 2k or 3k. I know that won’t sound like much to some of you, but for me, this is a considerable achievement.

Learning Point #2

Set yourself SMART goals, targets that push you, but are also realistic and measurable.

My MS has taken a considerable hit since I lost my job 16 months ago. I pondered long and hard about going into the details of this, but I think I’ll just say that I was fired, unfairly in my opinion (but I would say that, wouldn’t I?), which lead to six months of applying for other jobs, attending countless interviews, only to be told that ‘it was a good interview, and you were appoint able, but I’m afraid on this occasion you were unsuccessful.’

I started applying for jobs at my level – I’d been a locality manager for Play Services in Nottingham – to jobs that I’d done in the past at a lower level – volunteer coordinator, family support worker – until I eventually sucked it up and decided to apply for anything, even jobs far below my ability level.

When I stopped even getting interviews for these lower-level jobs, that was when I had to tell myself that it didn’t matter how much experience or what skills I had, I also have a wheelchair and a degenerative neurological condition.

Of course, no one came out and said that, but the end result is the same – I am no longer working and my prospects of getting back into employment are getting smaller by the day. To be honest, I’ve given up looking now, and the biggest challenge I face now is trying to work out how I fit into society; do I fit into society anymore?

  • When you meet new people, one of the topics that invariably comes up is What do you do for a living? which is something new I have to contend with now.
  • I am no longer able to provide for my family in the way that I did. We had to cancel a holiday following this period. People want to know Where did you go on holiday this year? Nowhere. We stayed at home.
  • I feel like a net drain on society – I now claim benefits for the first time in over thirty years of work, including 20 years as a disabled person, but now I take and don’t give back, financially anyway.
  • What did you get for Christmas? What did you get your kids? Well, I don’t feel like I should have anything nice or new and my ability to treat my family has disappeared overnight.

The impact this has had on me and my family has been significant. My MS symptoms have worsened, creating more difficulty for my wife that cares for me. My left hand now is almost useless in terms of typing and my right hand is heading in that direction as well!

So I’ve got all this extra time, but a combination of an inability to type and fatigue makes writing hard! I’ not talking about tiredness, need to get an early night – type fatigue. This is MS fatigue, the kind that makes you fall asleep at 2pm; the kind that makes your brain shut down, making thinking challenging to say the least.

But again, SMART goals: I write while I have the ability to do so, and rest when I can’t. Some days are better than others, so on those days I write more, and don’t worry when I can’t.

I can just about cope with the financial loss, it’s just he psychological loss I’m struggling with now…

2 thoughts on “Diary Of An Author With Multiple Sclerosis (Including A Monty Python Sketch!) – November 2020

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