Diary of an Author with Multiple Sclerosis – August 2018

Author with Multiple SclerosisThe last few weeks have been incredibly challenging for me, both as a writer, and someone with a degenerative condition. If any of you follow this blog (and I know there are at least one or 2 of you – thanks mum!), you may have noticed a gap of several weeks’ worth of posts. Things are slowly working their way back to a baseline level, but there is still some distance to travel. So on to the update, and as usual, writing first:

Writing

Back towards the end of May you will recall that there was a large change in the way we have to handle people’s personal information – GDPR. If I’m honest, it drove me round the bend a little bit. I’m sure you will have all seen the effects of this new legislation, perhaps by the tightening up of cookie requests when visiting new sites (possibly older ones too), being sent endless requests to reconfirm your desire to remain on mailing lists, or perhaps you have been putting this in place for your own website/mailing list. I wrote two lengthy posts recently about privacy and consent as it applies to GDPR, including my own privacy policy that you are free to use if you haven’t already considered this. I also carried out my own re-confirmation of my mailing list, offering my list of 2000 people a chance to stop hearing from me in my regular newsletter. I was fully ready for a number of these people to choose not to re-subscribe to my mailing list, but I was not ready to lose people in the numbers that I did. Here today (17th August) I now sit with a mailing list of just 200, just 10% of what it was. My original mailing list was garnered through a combination of organically obtained details through people subscribing on my website, referrals, and book giveaways and competitions from sites like authors XP and Instafreebie.

My first thought when I looked at these numbers was ‘holy cow!’ Does that mean my writing is bad, all my newsletters are rubbish? Well, when I look at the interaction figures over the last few months from these newsletters, I can see that I had an open rate well above the industry average, and each newsletter had a click rate approaching 50%, which is not too bad.

What it has left me with (which is no bad thing), is a highly targeted list of people that chose to remain on my mailing list, even when there was no freebie on offer. It feels a bit like having access to a secret club now, and a lot more personal!

I think I just need to go back to the start and begin the process of building my email list again. If you’re an author looking to build a fanbase, authorsxp and Instafreebie are your friends!

I’ve also written first drafts of two new short stories, one of which is available to read in its early form over on Chapterbuzz, and is inviting comments from readers. As it stands, I’m not satisfied with large parts of it, but that’s okay, as for me, it represented my way back into writing after some time away. It was written fully as a ‘pantser’ , meaning that I opened a Word document and started typing. I did no planning or outlining like I would normally do. I didn’t really know where it was going until I got there, which was quite exciting, to be honest. The second story doesn’t even have an ending yet, just a vague notion floating around in my head, which is fine with me. It felt good to be back at the keyboard after a few weeks of struggling (see below), and I would recommend some similar writing if you find yourself blocked or have been away from writing for a while. Just writing without any thought of where it’s going is quite refreshing!

Wheelchair rampHealth

My health took an unpleasant downturn over the last couple of months (hence the lateness of this diary update). My pain levels went back through the roof, which makes it difficult to concentrate, but as far as is possible, I think I have it under control now. The medication I take is keeping the pain at a manageable level. I could take more (Nortiptalyne), but I find that the negative side effects are unpleasant enough to make me not want to take any more than absolutely necessary.

I’m still taking Fampyra (cool name for a horror character) which helps with my limited mobility (it allows me to transfer from wheelchair to regular chair), Zapain, which is for pain relief (I’ll be stopping that soon as it’s not really helping), Baclofen for muscle spasticity, and I still inject Rebiff 3 times a week to help keep my number of relapses under control, which is important as my MS has moved into the secondary progressive stage but with super-imposed relapses, which makes me feel special!

I’ve been offered appointments at the pain management clinic but so far, I’ve not bothered – what would be the point? This is the hand I’ve been dealt in life and I just need to get on with it, right?

This last downswing had affected my ability to think clearly as well as upped my fatigue levels to the point that coming home from a day at work, then writing, was too much to contemplate. Something had to give, and unfortunately, I need the day job to bring in money, so the writing took a back seat for several weeks. I thought that would help, but after a few weeks of no writing, I began to feel worse from doing nothing, so I went back to my keyboard, but with a new goal of writing when I feel able, which, surprisingly, is more than I thought, now that I have started again!

But the big news is that in the last 2 weeks, work has started on an extension to my house, which will give me a downstairs bedroom – have you tried getting up stairs in a wheelchair?? I’m hoping it will take some of my stress away, as the night time routine is currently very stressful, and I rely on my 5’2″ wife to help me up the stairs, which is unpleasant for both of us, but also means I feel that I can’t stay up at night to write, as I can’t get into bed after! When the extension is completed, my bed will be about 2 metres away from my Mac, so that will be an improvement!

Here’s what’s been happening:

The view from the back of my house now…

IMG_0291

New drains went in…now I have a giant hole!

IMG_0294

The view from the back of what’s left of my garden…

IMG_0296

Very exciting, but I’m really sorry to be losing the garden. My wife loves the garden.

More updates to come, but I’m interested to know how people deal with pain – were you straight to the hospital, or did you investigate alternatives, and how effective were they?

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5 thoughts on “Diary of an Author with Multiple Sclerosis – August 2018

  1. Another great post! Im sorry to hear that you have had a rough go but glad you are getting back into the saddle so to speak! I too experience pain with my MS and I have started using medical Cannabis along with all of the other crap I currently take. My goal is to eventually wean myself off all of my other medication, but for now Cannabis, massage therapy and physical therapy are helping me manage! On the gardening side, have you thought about container gardening? I tried a few small containers this year and found it to be manageable and I even got a few edible veggies lol!
    Raegan

    Liked by 1 person

    1. Thanks for your response. Ive not tried cannabis yet, but i am thinking of trying some of the commercially available cannabis oil tablets. i will keep you updated. I’m also in line to participate in a trial for pain relief which involves weekly treatment by electrical stimuli, a bit like a Tens machine. We’ll see what difference that makes! I’m hoping that when the garden gets a bit clearer, i will be able to see what we’ve got to work with, so i’m still hopeful…

      Liked by 1 person

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