Diary of an Author with Multiple Sclerosis

Diary of an Author with Multiple SclerosisIt’s been a while since I’ve done one of these, but if you read my post ‘Back from the brink of despair,’ you’ll know that I’ve had a few challenges over the last few months, but now I feel like I’m clawing my way back, and I want to get back to my diary posts.

If you do a quick search on this blog, you will find the other entries of the past year or so, should you be so inclined to do so. They take – and will continue to take – the same format: I will open up about what’s been going on with my writing – what I’m working on, but also anything that I’ve learned, useful links etc. I’ll never open up with the Multiple Sclerosis / health update, because when MS decides it wants to take centre stage in my life, it will; I do not wish to give it that prominence in my writing. But is is a part of my life, one which, try as I might, I can’t ignore.

I am happy to talk about my disability, if you have any questions or opinions you wish to share. Just drop them into the comments below. I like to joke about my disability (not disability in general), so please feel free to have at it!

Writing

First of all, I’ll refer you back to the post I mention at the start of this post. Some of the last few months are discussed there, so I don’t want to duplicate.

NaNo was exciting again last November. It was my first attempt at working towards the novel, so that was a challenge, but worse than that, was that it coincided with a change in my meds (see below) that made typing difficult, and typing is kinda important for getting words down! But, at work, I have a laptop with Dragon Naturally Speaking installed. If you don’t know what Dragon is, click the link above, but in a nutshell, it allows you to dictate all your work, which is transcribed to your PC / Mac in frighteningly accurate detail. The link claims it allows you to get 3 times as much done, but for me, that number is much higher!

You can teach Dragon to recognise your accent (even Nottingham!), even teach it to put sentences down or a string of words, when you speak a particular phrase. If you’re a fantasy author, I can hear you saying ‘but my two main characters are called T’Plethic and Kraknaa. How will it recognise that?’ You teach it. Simple as that. Speak the name and teach Dragon what it sounds like, and it will appear on the screen. Magic.

That was great for some of November, but I couldn’t get the laptop every day, so I needed an alternative, which I found in my pocket – my iPhone 5S. It has a dictation mode that is good – not nearly as good as Dragon – but certainly passable, even with just 30 seconds dictation available at a time. When I’m sat waiting to collect my daughter from her job, I can dictate a few hundred words easily enough, and when I get home, the magic of iCloud has all my notes waiting for me on my Mac! Magic.

Cheating?

My question is this: Is that cheating for NaNo? Doing it that way, I took twenty minutes waiting to be let into my office in the morning, twenty minutes on my dinner break, fifteen minutes when I stopped on my way home, fifteen minutes waiting to collect daughter / son / wife. When I got home, I already had 1200 or more of my daily word total down. Doing it that way, I hit my total with relative ease. My only complaint is the number of spelling errors, but that could just be my accent 😉 One possible solution for that is Dragon Anywhere. Literally, Dragon on your phone or tablet, as long as you have a data connection.

But is it cheating?

Health

Well, what a fun time it’s been (sarcasm). Back in October, I talked to my MS nurse about changing my pain medication. My biggest problem has been that for as many years as I can remember, my feet have felt like they are sitting in a bucket of ice water. If you wonder how painful that is, just try filling your sink with ice cold water or putting your hand under the cold tap, and leaving it there, and getting someone to keep filling the sink with ice, so it never warms up. Painful. But what’s worse, is that this is neuropathic pain. That means it’s pain that’s not really there. It’s all in my head. So it’s not like a cut that I can apply cream to, or bandage up. Boo.

So I was taking Amitriptyline for the pain. It is an anti-depressant that has a side effect of pain relief for neuropathic pain. Go figure. But the Amitriptyline was not really touching the foot pain, so I asked for the change.

The first thing I had to do was to be weaned off my 70mg per day, at 10mg per week, which meant 8 weeks with diminishing relief! This was a very interesting experience, and had the following results: it made me realise that although the Amitriptyline was not helping my feet, what it was doing, was taking away all the other pain. When it started getting out of my system, I started to realise that whilst my feet were still freezing, the rest of my legs and parts of my torso were burning. The best way I can describe it, is like having a really bad sunburn; every time my clothes move over my skin, when my feet rest on the floor, when my hips, knees, ankles, face, arms touch the bed, it hurts.

BUT, suddenly I could walk up my stairs (with difficulty) whereas before I had spent the previous 6 months going up one step at a time on my backside. I could stand for longer. I could walk the ten yards to my car that I hadn’t done for months.

So I switched to Duloxetine. Suffice to say, I had a bad reaction: sickness, which was probably the least of the side effects; I lost the ability to sleep; I need to get up in the night to urinate like 3 or 4 times (at 46 I don’t expect to do that,  nor have ever done that). My walking has regressed. My standing is back to almost nothing. Oh, and there is no pain relief.

So, the next step is to change again. I am currently coming off the Duloxetine, and will be moving in a couple of weeks onto Nortiptyline. It’s another anti-depressant with favourable side effects, but it’s also used in the treatment of childhood bedwetting. Which is nice.

 

Let me know what challenges you are facing, and how you’re tackling them…

9 thoughts on “Diary of an Author with Multiple Sclerosis

  1. I have been drug free for two months now, caused in part by all the side effects. In many ways, my life is so much better. I still have the neurological pain in my feet, but nothing took that away any way. I would be interested in hearing the results of the new medication?

    Liked by 1 person

      1. I have several ‘conditions’ and several medications to take for them. Most of which you shouldn’t take if you are asthmatic, so I just decided to stop, and I have never felt better!

        Liked by 2 people

  2. I agree whole-heartedly with you Jenanita. There were all manner of obviously harmful ro the situation, meds prescribed in the early months after my diagnosis. Was amazing, wasn’t depressed but the 1st nine suggestions were antidressants because I must be depressed. Lol… specialist wasn’t aware of ocrevus being available in a few days. Actually made a note of it… this was initial meeting, consultation. ..

    Liked by 1 person

  3. Hi Steve! I am also a writer with MS. First i would like to say that using Dragon is definatly not cheating. You still have to edit what you have put down, which is where the real hard work begins. What are you writing about atm? I hope your next med choice allows you to be side effect free. You sound like you at least have the very best attitude to conquer MS with, and that is almost harder to achive than finding the right drug. Cheers 👋🏼

    Liked by 1 person

    1. Thanks for the comment Elizabeth! Writing has been hard in the last month, but I will get another diary update out soon to catch people up. What do you write and how does your MS affect that process?

      Liked by 1 person

      1. I am attempting a first draft of a story that looks like it will be young adult, but I haven’t got the story fully formed in my head yet. My symptoms are cognitive in nature, so writing can be a challenge. I am interested in the use of Dragon to get a first draft down. I wonder if the story comes out differently because of the different way it is being put down on the page? I think it might make the story more organic, as you aren’t tempted to edit and correct as you go. Something for me to ponder as i go to sleep for the evening! 😉

        Liked by 1 person

      2. That’s something I hadn’t considered. A lot of the stuff I dictated also went on my phone when I had a spare 10 minuets, so there was NO editing that went on whilst I was writing ‘

        Liked by 1 person

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