Diary of an Author with Multiple Sclerosis – May 2018

Author with Multiple SclerosisAnother month in the bag. Strange month, April. Not the month itself; that’s pretty standard – a bunch of days, some nights (about the same amount as the days), but what has occurred this last 6 weeks. On with the updates, as usual, writing first

Writing

It has been a difficult few weeks for me in terms of my writing, a lot of which has been wrapped up in my health, more of which you can read below.

I have found it difficult to start anything new this month, and have barely been able to continue existing projects. Writing has been hard this month – the ideas were slow coming, and I got bogged down in worrying (probably unduly) about the impact that GDPR was going to have on my writing. I continued to follow along with the progress of other authors I follow, and keep in touch with the people in the Facebook group that I am involved with, and they all seem to be getting along swimmingly. I want to be motivated by their apparent success, but this month, I can’t lie, it’s been hard to take that stance.

But do I really know what’s going on with these people?

Somewhat. I know what they choose to share on their blogs or Facebook posts, but what I don’t know, is what goes on away from these posts. For all I know, they have been finding the progress as difficult as I have. They may have lost their day jobs, their children may have been taken ill, their house could have been carried away in a hurricane. Who knows? If my house had been carried away in a hurricane, I would post that, trust me, but the difference is, that they have pushed on through this, as the drive to get their work out there is strong. I have heard and read many times that writing is hard; sometimes the words don’t come and sometimes when they do come, they’re all in the wrong places.

Why am I telling you this?

If I am feeling like this, I am sure there are others that have felt it, are feeling it, and reading that it happens to others is something I would want to read. Knowing that it’s not just me, would be enough to give me that sliver of hope for the future: there is a way back.

Learning point?

There is no easy way to tackle this, no magic wand to give you the words. I need to sit at my keyboard and start typing. I said last time that I had an idea for a novel. Well that’s still what I have: an idea. I’ve done some work filling it out, but it’s still just a rough idea, no more. But I didn’t want to do nothing, so I decided to focus on other areas of my writing:

Free Writing – I’ve not done any for a while, but I decided that I would start writing something. It wouldn’t turn into a story, it would just be a scene, perhaps, a situation, no more. If something came of it, that would be great, if it didn’t, that would also be fine. I mentioned last time that I had some zombies to write about, so that’s what I did. I’ve never written anything with zombies, so I thought Why not? I have recently purchased the board game Zombicide.

Zombicide
Image copyright CMON Games

If you’ve never come across it, it is a survival game where your small team of survivors must survive an onslaught from an endless zombie horde. My son and I have been playing our way through the missions, which can turn into some quite lengthy sessions (4hrs is our record!), but it made me think I could write the tale of these survivors. So that’s what I began to do. I made some notes as we played to help me remember some of the key points in the game, then I sat down and turned my notes into the survivor’s story. I took some liberties with the details, but it was a fun exercise, imagining what the survivors would say to each other, and how they would react. If nothing else, it would be a descriptive writing exercise. But it was more – it got me sitting back down at my Mac. I hope to serialise some of these tales here. They won’t be stories in the truest sense of the word, but hopefully they will be of interest to someone. They were to me. If you’re struggling with what to write, give it a go! Free writing for the win!

Zombie minatures
Image via agisn.de

Blog posting – I’ve managed to write two loooooong blog posts over the last few weeks. 2.5k words per post was longer than I had intended, but the topic, GDPR, seemed to warrant it. I don’t want to recount it all again here, but I will say that this legislation becomes enforceable as of the 25th May and I wanted to make sure I covered all of the bases. I did a lot of reading and asked a lot of questions, so I wanted to share what I had learned. If you want to learn how it could impact you, have a read of the post on Privacy and the one on Consent. It kept the fingers tapping. If you have a blog, write a post or two. What about? It doesn’t matter.

compact-cassette-157537_640.pngAudiobook – One day I’d like to have someone with a quality voice read some of my work, but until that day, I’ll cope with my own dulcet tones! I’ve already recorded one that is available on YouTube now, Reproductive Cycle, and I’ve just recorded a second and third, one is from my first book. Called A Snap of the Fingers, it is a horror about a boy faced with an impossible choice, the other is a completely new one, Acceptance, another horror, but in the style of the late nineteenth / early twentieth century authors. It’s a different way of getting my work in front of people, and that’s what I’m here for. I’ve not got the best voice, but it sure is fun!

Health

Last time, I mentioned I was considering giving up the pain medication altogether. I have been finding that any small amount of pain relief I was getting was having the undesirable side-effect of taking away what remaining strength I had in my legs. It has been the same with each type of pain meds I’ve tried over the last 6 months, and I’ve been left unable to get up the stairs and even transferring from my wheelchair to an office chair had become difficult. My standing time had been reduced to seconds – perhaps 3 or 4 seconds, and all strength seemed to leave me!

MS pain medicationSo I thought ‘enough is enough. I’ve coped with pain for this many years, I can cope for more’. So I stopped taking the pain meds. For a week I enjoyed walking up my stairs (of a fashion). I also enjoyed some of the worst pain I can remember. I stuck it out for a week. Who needs sleep? Eventually I caved in and went back to taking one tablet per day, which is where I am today. It has been enough to dial the pain back from a 10/10 to a more manageable 7/10, which I can tolerate. Joy.

But quickly I returned to a very dark place in my mind, which I think has played a part in my writing (or lack thereof). It has not hit me as hard as previously mentioned, but I can still feel it lurking in the back of my mind…

I feel like I have finally been able to put my finger on exactly what has been bothering me: The MS has robbed me not just of my ability to walk, my ability to sleep, my ability to live a pain-free life.

It has robbed me of my self-identity.

Dad – if you’re reading this, please skip this section, and please don’t ring me about it. Seriously.

Growing into a man, all I ever wanted to be in life, was my dad. I’d already proved that my skills were not a match for his in regards to fixing and making things, but that was okay – I could grow up to be the dad to my children that he was to me: Active, sporty, hands on. MS came and took away my ability to play football with my daughter, to go running with my son. Before you say ‘Steve, you are just a different man’, I know that. It’s just not the man I grew up believing I was going to be. That takes some getting used to.

Now, I have friends / family who I associate with certain things: (names changed) John is a coach for a University sports team, so is Alan; Jane is an academic genius, working on her MSc; Giles is the most intelligent person I know; Mr D is the manager of a successful sports team; and so on. For many years, I was Steve who played American Football. It was different. Not many of my friends did it. I was good at it. I played at International level. MS put a stop to that. Then I became Tai Chi Steve. I was good at that too. Then I went in a wheelchair, and that stopped. Sure I could do seated Tai Chi, but it wasn’t the same. I tried other things: For a while I was wheelchair Basketball Steve. That was too tiring. So I became writer Steve. Over the last few weeks, the tiredness has been building, my brain feels like it’s slowing down (has been for a while according to my daughter). Writer Steve is in danger of just becoming Steve again. That’s what it feels like, rightly or wrongly. It sucks.

To more positive things:

zipper-2923487_640.jpg

My downstairs extension is even closer to beginning! The grant to pay part of this work is secured, the contractor has been selected, now we are just waiting for them to begin the work. Hopefully within the next 6 weeks we can see shovels in the ground! I can’t tell you how excited I am at the prospect of being able to go to bed at night, without having to fight with my own limbs to get me there! Plus, my Mac will be in my bedroom, so I can finish up late, and just roll into bed! The only downside is having to clear out my garage, which is proving a hard task, as somehow, we’ve managed to acquire a lot of stuff. After spending a day at the weekend removing / sorting / rearranging, I just want to sit down in front of the TV and do nothing, which I realise is not productive in terms of writing, but sometimes I get so tired that I can’t think. Does that sound ridiculous? It kind of does as I write it, but it’s the best way I can describe it. Nothing. Happens. I’ve come to accept the fact that I’m never going to be prolific as a result. But, hey.

As usual, let me know how you feel about anything I’ve said. Have you ever felt anything similar? How did you deal with it?

6 thoughts on “Diary of an Author with Multiple Sclerosis – May 2018

  1. I can totally relate to where you’re at, Steve. I don’t have MS, at least they say I don’t, just peripheral neuropathy, which I swear is just another version. I have been forced to admit that I am slowing down and several parts of me refuse to behave nicely, something that depressed the hell out of me. I am coming to terms with it all now, after all at 74 years, I can’t expect to move about much, I just wish the brain would stay on my side!
    So, be like a fridge and chill, I’m trying to!

    Liked by 1 person

    1. Wise words! To be honest, the most difficult part to manage is the constant flux of my body. Just when I get used to one set of conditions, it changes again. I think I am always going to be ‘coming to terms’ with MS. Now though, battling my mind as well is just unfair!!😀

      Liked by 1 person

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