Dispatch from planet pain

It’s been a while since I wrote anything about living with a chronic pain condition so it’s time for another update. What fun!

The thing about a variable condition like mine is that while the pain never truly goes away it can sometimes lull you into a false sense of security by being less horrible for a while. And then it comes back full force and you remember why your life sucks.

I’ve been having shoulder trouble for a few weeks because I had dared to enjoy myself by playing video games. I cut right back on that and stretched more and just put up with the pain which is how pain management actually works. It doesn’t solve the problem it just helps you to live with it. Which usually means living less.

That’s not the pain I’m writing about now. Though now I think about them my shoulders do feel like I’m wearing lead epaulettes and I wish they’d stop.

Today I woke up and rolled over in bed and I really wished I hadn’t because it feels like some psychopath filled my pelvis and lower spine with broken glass. Holy crap it hurt. It’s still hurting. It’s hurting a bit less because I’ve taken paracetamol (acetaminophen for American readers) and vaped some CBD (cannabidiol, and yes it is legal in the uk).

What I want to say is that if you know someone with chronic pain and you see them smiling and moving around and apparently fine that doesn’t mean that they’re not actively in pain right now. It just means that compared to how much pain they have been in it’s no biggie for them.

If you also have chronic pain and you’re wondering about the CBD here’s the details. It’s legal in the UK. In the US it’s more complicated. In theory it’s legal at the federal level as long as there’s no THC in it but local laws vary.

I get mine from CBD Life, which is a UK based company though they do ship to other countries. I can recommend their vape liquid and their customer service but I have no first hand experience of their other products. That is an affiliate link. If you buy stuff from them I’ll get money off my next order, because I do buy and use their stuff and I want to buy more.

 

And if you want to buy me a coffee, because coffee does help with pain management, you can do it through Ko-fi.

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It’s never just one thing.

So in my last post my laptop had died and I discovered that I’d wasted 3 months preparing for a nonexistent competition. How can things get worse?

The good news is that my laptop is fixable and for a reasonable fee. The bad news is that after paying for that and buying Scrivener for the iPad my spouse and I went to the optician to get our eyes tested. I need new glasses and my other half needs two pairs (distance and reading glasses) and my eyesight is so bad that my one pair costs more than both of theirs.

I have a doctor’s appointment tomorrow. I dread to think what that’s going to reveal.

In addition to being impossibly broke yet again I also have to work out what my writing plan is. Until the debacle with the nonexistent pitch competition my plan was to prepare my current work in progress for the competition then when it failed to garner any interest I was going to query it while trying to fix whatever is wrong with the first one then pitch a third novel at Bloody Scotland in September.

I suppose I could still do the parts that don’t involve the nonexistent pitch but it’s feeling pointless. I can’t work out if it’s my usual terrible self esteem talking or if there’s something wrong with this plan that I’m not letting myself see. There’s this voice in the back of my head that keeps telling me that this can’t possibly work because that’s not how my life works. And it’s not wrong about my life so far. It is kind of insane to expect anyone to value anything I do enough to pay me for it. They never have so far.

I hope I’ll be back with a new blog post about Infinity War soon but it probably wont be until I get my repaired computer back. In the meantime if you want to donate to the fix the computer fund or the actually be able to see fund then you can do it via Ko-Fi. Yes it says that you’re buying me a coffee but I’m allowed to spend the money on something other than coffee. Also coffee is a vital part of the creative process.

There’s also the Shop Of Doom. It’s still closing on May 8th because nobody is buying anything. Which is a pity, I have a couple of the t-shirts and they’re lovely, but I get that they’re pretty expensive and not to everyone’s taste. At least I tried. Having tried is not as much consolation as you’d think. It really doesn’t ease the sting of failure much at all.

Cursed

Let me tell you how my weekend went. On Saturday I took my son to see Infinity War. I was traumatised, I tell you. I’ll talk more about it in another post.

Then I got home to work on my pitch submission and found that my Laptop would no longer charge, probably because the internal socket for the power cable is damaged. So I tried to use the remaining battery life to put in a hurried submission. I did my best and I got something that wasn’t as good as what I would have had if I’d had more time but might have been good enough and I tried to send it in. I filled in the form on the website and it sent me an email with a link to a service to upload my files to XPONorth’s dropbox account.

And that link led to a discontinued service. A service which, according to the copyright date on the page, was discontinued last year. So I emailed XPONorth. And posted on their Facebook page and sent them a message using Facebook Messenger and tweeted about it and mentioned them in the tweet. I’ve heard nothing from them. But I know they’ve seen at least one of the tweets because the official Twitter account liked it.

It would seem that the Writers Pitch to Publishers and Agents event at this year’s XPONorth has been cancelled. But they didn’t do anything sensible like taking down the webpage, disabling the online form or changing the automated email. I have wasted three fucking months preparing for a non existent competition.

And of course my laptop is dead. I hope to get it repaired but that means spending money I shouldn’t be spending. I’m typing this on my iPad which means I’ve had to delete a bunch of apps I was using so I could fit the WordPress app and the Scrivener app onto it. Oh and I had to buy the Scrivener app so I could try to continue work on my novel only the app version doesn’t have the split screen feature that I use to re-write with.

On Sunday I went to Dundee to meet my mother for lunch and chat and a bit of shopping. Well, she shopped. I watched her shop because I need my money for repairing my laptop and buying expensive writing apps.

For some reason my Mother had her laptop with her. I don’t know why she had it. She never mentioned to me that she had it even when I told her about my laptop having died. I only know she had it because that evening, when I was at home, she called me to ask if I remembered at what point she lost it. Well obviously not. If I’d have known that I would have told her at the time.

I’m cursed I tell you, cursed.

If you’re feeling like donating to the ‘repair the computer assuming it can be repaired’ fund then you should use the Ko-fi link. I can’t add it while I’m using the iPad but there should be one on the sidebar or below this post or you could go back a couple of posts to get it. You could also find the link to the Shop o’ Doom in an earlier post. It’s still closing on the 8th of May. Assuming I can close it using the Shopify app.

Exactly how hard do I have to Art?*

*The title of this post was brought to you by this wonderful Chuck Wendig post, ARTING HARD LIKE AN ARTFUL MOTHERFUCKER

There is a myth in the creative industries that I always think of as,

“If you build it they will come.”

Which is just a fancy way of saying,

“If you art hard enough eventually people will notice and the transformative powers of capitalism will turn the attention into money.”

This is not a lie but it’s also not true in any useful sense. Let’s look at the problems with it.

  1. Building it isn’t free.
  2. People have to know about it in order to come.
  3. Even when they know about it most of them won’t come.
  4. Some of the ones that do come will be dicks about it.
  5. You can’t pay your landlord in exposure.

1. Building it isn’t free: Some of you might be ready to jump in and point out that I’m a writer and writing is free. No it’s not. It is one of the cheapest ways to art but it’s not free. I need food, and a device to write on and electricity to power it and internet access to get whatever I write into the world. Even if I wrote with pen and paper, and stole the pen from Argos, and scavenged the paper from recycling bins, and photographed it on a borrowed phone, and posted it using free wifi; I’d still need food and a roof over my head. Also there’s a limit to how many times you can borrow a phone.

2. People have to know about it in order to come: The internet is full of people trying to get other people to look at stuff. Any budding artist is just one more voice in the cacophony. Maybe you get lucky and a tweet goes viral? Perhaps someone famous happens on your work and boosts it? Or neither of those things happens and the same ten friends see everything you do and nobody else ever knows about it.

3. Even when they know about it most of them won’t come: You’d be amazed at how hard it is to get people to look at your stuff. Even when your stuff is finished. Even when they know and like you. Even if it’s the kind of stuff they like. Even if they’ve said they’ll look at it. Most of them just don’t. Maybe they’re worried that it will suck and then they’ll have to tell you that it sucks or lie to you and watch as you make a fool of yourself. Maybe they’re just busy. Maybe it’s just that tendency to underestimate the people you know because how special can they be if they know you?

4. Some of the ones that do come will be dicks about it: Everyone knows that you should never look at the comments. That’s because people are dicks in the comments. If you do attract the attention of someone other than that same ten friends who look at everything you make then eventually someone is going to be a dick about it. They will complain that you’ve made it badly, or that it’s the wrong sort of thing, or that you’re the wrong person to be making it. And if it’s visual art there’s a good chance someone will steal it. And if it gets stolen and you object they’ll be dicks about that too.

5. You can’t pay your landlord in exposure: I have no idea how to monetise art. Every attempt I’ve made has failed. Some people seem to do it effortlessly. Maybe you should ask one of them. Or better yet ask one of those people that you can see working at it because they have skills rather than privilege. Maybe they’ll have some useful advice. I can’t help. I’m stuck here trying to write better because it’s all I know how to do.

If you have enjoyed this bitter rant on the subject of creativity why not prove me wrong by buying me a coffee with Ko-Fi. Or pop over to the Shop of Doom (only open till May 8th) and buy yourself something nice.

Things are not going my way

Gentle readers I beg your patience while I rant for a bit. The last few days have not gone well and the next few aren’t looking great either.

I’m having a major Fibromyalgia flare up. For the last three days I’ve had a muscle spasm in my back so bad that the pain has gone through excruciating and into exquisite. I’m taking Tramadol, Paracetamol and vaping CBD and I still can’t bend without screaming. There is no comfortable way for me to sit, stand or lie. Part of the spasm is over my left kidney and if I started pissing blood it would be a relief because a kidney infection can be treated, kidney stones pass, even kidney failure can be managed.

Fortunately that’s distracting me from the sudden appearance of a hole in one of my back teeth. I think a filling might have fallen out. Or maybe a bit of the tooth has cracked off. I already had a dental appointment this week so that’s lucky. I’m trying really hard to believe that it’s lucky but it’s hard to think straight over the screaming pain from my back.

I’m still not back on my usual eating plan because of difficulty getting the shopping sorted. Between trouble with deliveries and the problem with my back and my spouse’s anxiety being too bad to do the shopping for me I’m having difficulty sorting out a coherent meal plan.

I’m having trouble getting anything done. I started this weekend with a book I’m wanted to read, a film I wanted to watch on Netflix, a film I’m trying to see in the cinema before it leaves a podcast I’m trying to catch up with and a novel that I’m trying to finish writing. In all I managed 15 pages of the book, neither of the films, 3 episodes of the podcast and about 2,000 re-written words of my novel. That’s pathetic.

And the worst of it is this feeling that my life is slipping away from me. Time is passing and I’m not doing anything with it. Precious seconds of my life are ticking by and I am variously paralyzed by pain, or depression, or indecision, or just lack of basic organisational skills.

2018 Diet Update 4

Before I begin my update I have a message for the various diet and weight loss blogs that keep liking these posts and following this blog. Please stop. This blog is not for you. I regard the entire weight loss industry as predatory. Fat people are not necessarily unhealthy. A person’s size has nothing to do with their value as a human being. 95% of all diets fail and the 5% that succeed only do so by the most meagre definition of success.

I’m not dieting out of any hope that my life will improve or that I will look better or feel better. I’m dieting to prove my doctor wrong. I’m dieting because that’s a thing I have to do if I eventually want to get surgery for my lipoedema. And I don’t have to like it. In fact I hate it. It makes my life so much harder than it needs to be and my life was already pretty fucking hard.

And now we continue with our regularly scheduled update. This week I lost 0.2kg (200g or less than half a pound). That doesn’t seem statistically significant to me. On the other hand it’s not weight gain so I’m not complaining. I had to take a break from my push to 100 squats because my knee objected.

I also had an appointment with the Lymphoedema Nurse to check on my compression tights. She’s suggested replacement compression garments with lower level compression and in a different design. The hope is that they’ll be easier to get on and that I’ll be able to wear them all day.

It’s not the pain that’s the worst it’s the rage

Every day the first thing that I do is to fight with my compression tights. And also my self image and my failing body. I say it’s the first thing but really the first thing I do is to wake up and curse the fact that I am awake and alive and that my life is still like this. Then I muster my limited mental resources for the act of will necessary to get out of bed. Then I fight.

It makes me so fucking angry. Getting up every day to fight a losing battle against the Lipoedema that will eventually turn me into a blob in a wheelchair. Being faced with the reality that I’m not strong enough to get my fucking tights on properly. Knowing that if I can’t master compression garments I won’t even get on the waiting list for the surgery that is the only lasting treatment.

Spending the next hour with weak arms and shaking hands because I’m not getting any better at this. Unable to go anywhere because I can’t get the tights to stay up while I’m walking. Fighting the urge to stab myself. To hack at the useless, lumpy flesh that’s destroying my joints.

And then I spend the rest of the day surrounded by the evidence of the chores that I can’t do because I’m too exhausted from my battle.

I’m trying to get better. I diet even though I hate it and I know it won’t fix the lipoedema. I try to exercise even though that hurts and so far actually seems to be making things worse. I’ve been trying the 100 squat challenge. It took me 3 days to get up to 100 squats but I haven’t managed it since because my right knee hurts too much. The knee pain woke me up this morning.

And the absolute worst is the feeling that it’s all worthless. What’s the point of all this fighting? All it does it makes me angry and tired. I’m giving up the ability to get stuff done now for the chance to be able to do more in the future. But that’s just not going to happen. I don’t get that lucky. This fight is doomed to failure and by fighting I’m making everything worse right now.

 

If you have enjoyed this post then why not buy me a coffee with Ko-Fi?

Review – Plague

 

Plague by Lawrence Clayton Miller

Schtop, schtop… this biblically themed international thriller isn’t ready yet. It needs at least one more editor.*

Depending on how quickly you read this book it’s either flawed but interesting or hurl-it-across-the-room every second page frustrating.

Most people don’t read every single word in a sentence, one at a time, in order. We tend to scan the whole line and we skim over many common words like ‘the’ without consciously reading them at all. The faster you read the more of the page you’re reading in one go. Therefore the faster you read the more the layout of what you’re reading matters.

I’m no speed reader but I am pretty fast. My record for a whole novel is about two hours and if I don’t consciously slow myself down then I tend to consume even pretty big books in a single sitting. So when I read a book like this that changes location, focal character and point in time with just a paragraph break I tend to get confused.

I’m sure the author is going for a seamless transition from scene to scene. But if you read quickly it’s more like getting whiplash of the imagination. One minute I’m in Dominica and the next I’m in London. In one sequence we go from a woman contemplating a phone call when she gets to America, to in America making the actual phone call, to the reaction to that phone call from the point of view of the guy she’s phoning. This all happens with less break in the text than there is between the paragraphs of this post.

Perhaps the author intends the narrative to feel like it’s whipping around the world at breakneck speed but it doesn’t compensate for the other problem. The massive front loading of backstory. Maybe I’m over sensitive to this because as an aspiring writer I’ve read a lot of how to manuals that tell me that the opening chapter is no place to explore the tragic past of your central character. You’re supposed to show the reader why a character matters before you try to tell them anything about that character’s backstory.

The third problem is one of research and if you’re American this probably won’t affect you at all so you can stop reading. There is a character in this book who works for the SIS. That’s Britain’s intelligence agency the Secret Intelligence Service. The author gets almost everything wrong about the SIS. Probably because he assumes that the SIS runs like US intelligence agencies.

Just to give you a few examples: The people who work for the SIS are officers not agents. The SIS doesn’t get sent to foreign countries to investigate weird deaths unless there’s some suggestion that it’s linked to a direct threat to Britain or British intelligence interests. That’s true regardless of whether the country in question is part of the Commonwealth or not. SIS officers don’t go flashing their credentials to everyone on the ground. They don’t introduce themselves to all and sundry as SIS officers. Remember that the first S stands for SECRET.

This is not a bad book. But it’s not as good as it could have been were the promising narrative not drowning in poor formatting, premature backstory and flawed research.

*Imagine you read that in a terrible fake Dutch accent.

If I’m so clever why am I also such an idiot?

Once again I feel like human garbage. This happens often. Today it has happened because I can’t keep all our finances in my head.

That is how it’s done, right? You know how much money comes in. You know what all the bills are. You keep a running total. You pay the bills when you have money and you know how much you have left over. It’s not rocket science. My parents did it. My Mum still does it and she’s on the other side of 70.

But I just can’t make it work. I’ve never been able to keep it all straight in my head and it’s not because I can’t count. I’ve tried to externalise since the other way wasn’t working. I make notes in my diary. I have reminders on my phone calendar. I have a banking app that means that I can check how much money there is at any given moment and move it between the current account and the savings account.

It all seems very organised it but I keep running into the same problem. I want to buy something, or we need to buy something, or my spouse wants to buy something and I keep making the decision based on how much money we have right now. Not on how much money we’re going to have tomorrow, or next week, or on whatever mystery date the next bill needs to be paid.

Yes I do absolutely understand that I am poor and therefore I should never spend any money on anything that gives me joy. But there’s a limit on how many times you can say no in a day There’s also a limit on how long you can live with no joy.

Also I am weak and stupid. I must be stupid. Managing money is so easy. Everybody says so.

Adventures in medicinal hosiery

On Saturday my compression tights finally arrived so I can finally begin to manage my lipoedema. I read the instructions carefully but I didn’t put them on because I was already dressed and frankly, the instructions scared me.

On Sunday I tried them on. It was torture. The fabric is so rough and requires so much force to pull into position that I developed a blister on one knuckle and tore the skin red raw on all the others.

My arms were shaking. The tights weren’t pulled on properly. My legs were on fire and I was filled with an irrational rage caused by a combination of exertion and body dysmorphia. I felt useless and weak. I decided that maybe I was doing something wrong, even though I had read the instructions and done my best to follow them. I was only able to wear the tights for an hour and a half because I couldn’t get them back on after using the toilet.

I asked for advice in one of the Facebook support groups for lipoedema. It turns out you’re supposed to use gloves. There are even special donning gloves made for the job (though most of the members use either disposable latex gloves, rubber washing up gloves, or gardening gloves). How is it that I didn’t know that? If it’s well known that this kind of compression garment will tear your skin off and there are gloves made for the job why didn’t anyone tell me that?

Today I tried to put them on again with mixed success. I used some disposable vinyl gloves that we had in the house and I tried lying down to get them above the knees. As I result I’m typing this while wearing the tights (though they’re still not on properly) but I’m also wearing a lot of plasters because I tore the blister right off and added four new blisters and that was with the gloves on. I think I might have blisters coming up on two of my fingertips. I’ve ordered better gloves and finger tape.

You know how I often complain that my life is unreasonably difficult, that there are always more steps between me and where I want to be than there should be? This is that. This is just another example of the endless multiplication of obstacles between me and any goal.