Diary of an author with Multiple Sclerosis: April (Late!)

stormtrooper in wheelchairAnother month in the bag (well a month and a few days). I’ve been a bit hard on myself this month, as I feel like I’ve been dragging my feet a bit (not that I drag my feet when I’m in my wheelchair, but you get the idea). I feel like I’ve had a lot of downtime where I haven’t been writing. I guess I’ll find out exactly what I did when this post is written!

I started the month by writing a short story called Tooth Fairy. It’s a reworking of a classic tale that we tell our children. It’s FREE and short and you can read it HERE. It was a super-short story, of just 1500 words, which I sent out to my email list followers. There was a huge uptake in downloading this short story, followed by people contacting me about where they could leave a review, as it wasn’t anywhere on the internet! Quickly spurred into action, I uploaded the FREE story to Smashwords, making it available everywhere except Amazon, with a hastily created cover. In the last month, and with no promotion, Tooth Fairy has so far received over 350 downloads, which I’m really pleased with! If you want to read Tooth Fairy, you can do so by hopping over to Smashwords where you can download it in your preferred file format. Let me know what you think in the comments.

I started looking for beta-readers for my next collection. I made this opportunity available ONLY to my subscribers (if you’re interested, GO HERE ). I have a small but growing team of readers helping with this, so come and join us, and get access to my next collection for FREE. Numbers are limited, so act fast! Get in touch via my CONTACT page, to let me know if you’re interested.

I also introduced the blogging world to my fictional town of SPENNYRIVER, a small town in the heart of the Midlands, UK. It’s like a regular town with regular people. Just weirder. You can read the first entries of the Spennyriver Dispatch, the local newspaper, HERE and HERE

I received some more 5 star reviews for A Sinister Six, which is amazing! I have kept the price of that collection as low as I can, for as long as I can, but that time will be coming to an end. At the end of this month (May) I will be putting the price up to its original price of £2.99, so if you are interested in getting hold of Sinister for just 99p, you’ve only got a couple of weeks to do so!

I also found time to write a guest post for author Nicholas Rossis,  it’s a look into the best times to Tweet. I think it’s a really useful article that has informed my Tweeting habits. Have a look at the post HERE.

I completed work on my FREE OFFER for email subscribers. I wanted to offer much more than a story, which I think I’ve managed to do, but you be the judge. You can read about that book in this POST, along with details of how you can get it!

As a result of some my health issues, I will be scaling back my blog posts. I have been posting pretty much daily for the last nine months, and it has been great. I’ve met and communicated with many fantastic readers and authors, but I’m not finding time to actually write fiction! I’m not finished, and I will try to post content whenever I can, but for the time being, it will be less often as usual. I’m really sorry, and I feel bad about it, but what I want to do is write fiction, so that’s what I’m going to do. I read THIS POST , and it told me that the way I was feeling at the time, was not just limited to myself, so thanks Hugh!

MS bit

tired catThese last few weeks have been particularly difficult for my health. Anyone that knows about MS will know that one of the most common, but most debilitating symptoms, is fatigue, and boy have I been tired! I was trying to explain to someone what it was like, and was it different from the regular tiredness we all feel when we get into work on a Monday morning. I have no wish to decry anyone’s experiences of tiredness or fatigue, so I will talk about MY tiredness and fatigue, and mine alone. I explained it to my friend thusly:

Imagine running a marathon, then another. That’s what I feel like when I get out of bed in the morning. Then I go to work, run another marathon, and then come home, which is when I try to write.

If you’ve ever been to a gym and tried lifting weights, you may be able to relate to this example: imagine that you have done a full set of presses and your arm / leg muscles have given as much as they can, but you really want to feel that burn, so you go for another six reps, bringing you almost to failing point. That is the feeling my legs have when I try to climb the stairs, or move around during the day (without my wheelchair).

My brain gets tired when I feel like this and trying to be creative is hard, to say the least. I also find that I struggle to find a word every now and again and spend several minutes trying to explain what I want to say to my wife and children, who generally come up with the word if it hasn’t yet come to my mind.

My fingers get tired, and I start to make a lot more mistakes when I’m typing. Some are not just ‘fat fingers’- typos. Some are much stranger. For example, I could want to type ‘school’, but it could come out as ‘scchhl’. The word is in there, sort it out for yourself! Worse than this, is that sometimes, when I am writing (which I do on my Mac), my little finger on my right hand often sinks down, catching my trackpad which sits alongside my keyboard, resulting in the cursor moving all over the screen, and if I’m not careful, I can type over work I’ve already done, drag a picture across the screen, or just plain delete a section of text! It’s funny now, as I write it, but I promise you I don’t laugh when it’s happening.

The last thing that has been vexing me this month is the delivery of my medication. In my experience, it has been problematic at best. Each month I take delivery of two different meds that are crucial to keeping me functioning. Each month I receive a courtesy call from the company that delivers, and most of those times I have to restate my delivery instructions; I thought they were clear: deliver to my house, but if I’m not in, they go to my Chemist (50 metres from my front door), but often, I will have to restate these instructions. Also, I will often get calls from the driver, explaining that he/she is outside my house and I’m not in. I then have to explain how to get the meds to my chemist.

Another problem that has continued to happen over the last sixteen years, is the lack of communication been hospital and GP. When I go to the hospital to see my consultant, often he will increase the dosage of one of my tablets or other, which means that I run through my prescription faster than normal, but when I got to pick up my prescription, the GP will not write the prescription, as they believe I should still have some left. What follows is many phone calls to the hospital to get them to confirm the new dosage. This has happened EVERY time there has been a change. This last week, however, I had a new problem. One of my meds on a repeat prescription was not delivered with my other meds. I asked the driver and they said they only deliver what they are given (fair enough). They gave me a (wrong) number to ring, and when I finally got to speak to the right person, they explained that my prescription had expired and the hospital hadn’t reissued a new one. The hospital say they have sent it, and offer me emails as proof. The Delivery agent doesn’t have it, so what follows is a lot of me chasing up, trying to get someone to agree that I need these meds in the next two days. Phew.

 

Tough couple of months, these last two.

 

Don’t write me off…

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7 thoughts on “Diary of an author with Multiple Sclerosis: April (Late!)

  1. It is fine to step back, Steve. I cut back my posts this past year. I try and keep up with all the blogs I subscribe to through the week but sometimes I can’t. I just do what I can and move on. Absolutely, writing should be your priority! You are a writer! I had to cut back for this reason. Hugs and be blessed!

    Liked by 1 person

    • Thanks Traci. You’ve been a big supporter for a long time for which I’m grateful. This is a new chapter and is going to take some getting used to! Like you, I’ll stay involved with the blogging and writing community 😀

      Liked by 1 person

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