Diary of an Author with Multiple Sclerosis

Author with Multiple Sclerosis

March is here already. I truly cannot believe the pace at which this year is moving. I think it could just be a sign that I’m getting old…

On to this month’s happenings, as usual, writing first…


In the first part of the month, I continued on with my novel, which now has a working title of Parklife. It’s a horror story about a group of people trapped in an Elizabethan period Stately home by the creatures that live in the forest. Chis Moore, a volunteer teaching assistant, must protect his son and the other children in his class from the dangers both without and within the hall. When I started writing this, I mocked up a cover, which I did in five minutes, so it’s not high quality before you start laughing! But I have found that looking at this image keeps my mind in the right place for the story. I really like the idea, I think because it is vaguely similar to the cover for the film Jaws, a favourite of mine. Here it is:

I’ve got that first draft up to 65K words so far and I think it’s going to go up a bit more before it comes down in editing.

For the second half of the month, I decided to take a break from Parklife, and switched back to writing a couple of short stories that I’ve been working on from time to time. The first is a story called Nancy, Please. It’s a story that I wrote last year, but it’s been sitting on my hard drive, untouched since that first draft, which I think is a good idea – well, it certainly works for me. Writing something and going straight into the edits has always seemed a bit rushed to me. I like to come back at it in weeks / months when the idea has had a chance to roll around in my head for a while. The first draft comes out as fast as I can get it down, but then I can really give some time to thinking about the best way to make the story work.

Next is a story called Road to Nowhere, again one that I drafted about five years ago, back when I thought my writing was good enough to stand on its own after the first draft. Yeah, looking back now, that’s not the case!

With both of these stories, they needed a complete rewrite. I like the stories, but there was something missing in both, and I’ve tried something that I’ve only ever done once before: I decided to change the viewpoint from third to first person in both cases. In the case of Nancy, Please, I’m going for first person present tense. Road to NowhereI have just started, and it is turning out to be told in both past and present tense, which is a bit scary, as it’s not really something I’ve tried much of.

I really like how it sounds (at least in my head), as I’m able to do a lot more internal dialogue of my protagonist, which is something I really enjoy, my only concern, is getting all the tenses correct, and I still find myself rereading sentences and changing them more than once! I’m going to need a lot of help from my critical friend on this one!

Last time, I wrote about becoming bogged down in the long 2ndact of my novel. I talked about breaking it up into pieces (and I don’t mean tearing your manuscript up). The question I left unanswered, was ‘what do you fill each of these parts with, without making the book drag? In earlier attempts at novels, I always got bogged down here, thinking ‘what the hell are my characters going to do now?’ Writing Act 1 was fun and relatively easy, as was act 3, simply because I knew what I wanted to happen. Now what? I explored several options:

  • My characters trek across the country, getting into trouble.
  • They sit around in a café and talk about what has happened in act 1
  • They sit around in a café and plan about what to do in act 3
  • Will a ghost appear and artificially rush them towards the climax?

None of those are particularly effective, and while I am still no expert, I have learned a few tricks to fill out that act 2 space effectively:

  • New characters – explore the stories of other characters. How do they fit into the overall plot? Do they have an arc all of their own?
  • New problems – think about several ways in which your protagonist could be thwarted in their overall goal.
  • Internal struggles – investigate what might be going on in your protagonist’s head

For a more in depth look, head over to well-storied.com for more advice if your second act is dragging.

Disability Multiple Sclerosis

This month has presented me with another new problem, to go along with the existing ones: pressure sores. What a fun subject to talk about, but as someone that spends nearly all of his time sitting down, it is something I need to address. I’m combatting this by shifting my weight as often as I can, not to mention standing as best as I can.

Even so, it’s uncomfortable! The other uncomfortable thing I am dealing with is neuropathic skin pain. Is that something anyone else with MS experiences? For the uninitiated, I would describe it like having really bad sunburn. For me, it’s mostly (thankfully) confined to my legs, and I feel it where my clothes touch my skin, and I’ve become used to wearing clothes during the day, which make it hard to escape. As well as clothes, it is the bed covers, the bed, a chair, or basically anywhere that I comein contact with, and as I’ve not yet fully developed levitation, I’m in contact with something fairly regularly (although, even flying, I assume I would be wearing clothes). That leads me to wonder if some of the pain I am feeling is not pressure pain, but neuropathic pain. I would be interested to hear if anyone else ever feels similar discomfort. How the hell are you dealing with it?

I’m taking pain meds, but they only take the edge off it. The best one I’ve tried so far is Amitriptyline, and on 70mg per day, I was able to mask almost all of this pain, unfortunately the negatives outweighed the positives for me in this case. Tiredness, inability to stand / transfer are things that I didn’t want. I guess that’s the price to pay. Plus, good quality pressure cushions are bloody expensive!

Other than that, it’s been a relatively stable month again. Still waiting for the work on my downstairs bedroom to start, but we are fully moved in to the new living room, complete with wheelchair ramp. On my days off, I still get a lot of enjoyment from going out the house, down the ramp and back up again. Why? Just because I can!

My question this month: I struggle with getting to the door if I’m in the house by myself, in that by the time I have got off the settee, into the wheelchair and moved to the door, the caller has already left, and if it’s a delivery, a note has been pushed through the letterbox, saying my parcel is at the sorting office. I am thinking about getting one of these smart doorbells, the kind that will let me answer the door from my phone, giving me time to get to the door, maybe with a camera. Have you ever used one? Is there anything particularly I should look out for? Do you have a recommendation? Don’t forget I’m in the UK, and I don’t want to spend £200!

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