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.


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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.

Art and work and money

I am very bad at turning work into money. It’s a terrible flaw for anyone but it’s particularly bad for someone who has as much trouble getting any work done as I do. I’d say it was a problem with turning art into money but it really does apply to all the work I’ve ever done. It’s just that it’s even harder with art.

It feels impossible but I know that it’s not. There are people who make money from art. A few of them make a lot, some of them make a living and there’s a lot of people who make something.

I’ve been writing novels for more than a decade and writing has been my main focus for two years and I have made precisely fuck all. I don’t even feel any closer to making money. At least it’s not costing me very much. I spent about six years making jewellery and while I did sell some of it I’m pretty sure that I never actually turned a profit. I probably made a loss. I spent more than 10 years painting and I never sold anything to anyone I wasn’t related to.

I have to admit that I was never much of a painter. I tried hard but I wasn’t very good. I was much better at making jewellery but my physical limitations didn’t help and I was too poor to afford the best quality materials.

I am good at writing. There are no financial or physical limitations keeping me from success. But somehow I still can’t seem to make any money. I’m not saying there’s no money to be made. I’m saying that I don’t have an entrepreneurial bone in my body.

I’ve said in the past that I didn’t want to self publish and I’ll reiterate that it’s not because I think there’s something wrong with self publishing. It’s because I don’t want to spend time that I could be writing on all the other stuff that goes with self publishing. I want to be a writer I don’t want to run a business. Traditional publishing is an effective way to subcontract all the work involved with turning a manuscript into a book without having to pay people up front. Self publishing means either doing it all yourself, or paying people, or guilting people into doing it for ‘exposure’ but fuck that noise.

I’ve looked into a Patreon to support this blog and thought about setting up a Kickstarter so I can publish my first novel but I don’t think I have enough followers to make either work. And I am shitty at self promotion.

So here’s to another year of writing for free in the hope that I’ll learn the alchemy of popularity that turns art into gold.

What to do, what to do?

I have one halfway valuable talent and it’s writing. It’s not the only thing I can do but my other talents are either valued even less or require even more investment or are just too exhausting for a Spoonie like me.

In theory it’s never been easier to get your writing in front of people. Getting paid for your writing is another matter entirely. I’ve been lucky so far, if by lucky you mean basically cursed, because I’m disabled enough that the government gives me money. That means that I’ve been able to write without needing to get paid immediately. I could look on my writing as an investment that would pay off eventually.

I’m now getting to the point where eventually needs to be soon. But I’m starting to feel like eventually is going to end up being never. With each passing day I have less and less hope that I’ll be able to get published via the traditional route. My only other option is self publishing badly and sending my precious story out to die with all the other half assed self pub books. I don’t have the skills or the money to do it properly.

Every time I think I’ve found a way to turn my skill into income it just evaporates as soon as I get close. Self publishing in’t the cake walk that some people would have you believe. Patreon have just said they don’t want people like me, if you don’t already have a huge following they’re not interested, Kickstarter is for people with plans, I’ve yet to find an even slightly ethical way to make money from any blog that I’d be able to write.

I spent more than half my life desperately wishing that I knew what to aim for. And now I know. And I’ve been working towards it steadily for 12 years and it feels like I’m no closer than I was at the start.

So I don’t know what to do. I’ll keep writing as long as I have a device to write on and I’ll keep blogging as long as I have a device and internet access. Maybe the problem is just that I’m not good enough yet. Maybe I’ll stumble into something interesting enough to say and everything will change. Probably not though.

It might be time to stop editing what I write. I write because I have to. I edit because I want to get paid. If I’m not getting paid now and there’s no hope of getting paid eventually then why am I editing?

Be careful what you wish for

I realised a strange thing this week. Through the power of the internet I saw a Nazi go from blustering about his power to weeping in fear that police might shoot him. The comment section was full of people holding him up as an example of the fundamental weakness of Nazis as a group. Something about it seemed familiar. A also saw a young man who marched with Nazis and thinks that multiculturalism is cancer but swears he isn’t a Nazi complaining about getting death threats over the internet. Something about that seemed familiar too.

I realised that they were experiencing what it’s like to belong to a minority. They’ve been saying for years that white men are the ones who are really oppressed and now they get to find out what that’s actually like. You see when a woman fails she fails on behalf of all women. When a person of colour breaks the law the reaction is disproportionately harsh. When any member of a minority sticks their head above the metaphorical parapet someone will try to shoot it off. One needs privilege to survive mediocrity and incompetence.

I have no illusions that it will last. Either things are going to get very dark or the Natzis will climb back into their holes for a while and people will forget that there are still Natzis in the world. Very soon it will again be possible for white people to espouse the beliefs that sent millions to the gas chambers and plunged the world into war and other white people will pretend that they don’t really mean it.

But for a while perhaps thost of us who really do face discrimination and oppression are allowed a little schadenfreude at the idea of Natzis finding out what it’s like. They really don’t seem to have the constitution for it.

Well suck it up, buttercup. This is what life is like for everyone who isn’t an able-bodied, cis-gendered, heterosexual white man. This is what the rest of us put up with while you’re whining on the internet about how women oppress you by refusing your advances or sleeping with men you don’t approve of. While you’re blaming immigrants for depressed wages and affirmative action for keeping you out of your ‘rightful’ job the rest of us have been working twice as hard for half as much and being told that we should be grateful for it.

I can deal with the pain it’s the frustration that really hurts.

So the CBD oil that I’ve been talking about in previous posts here and here is definitely working.

My background levels of pain have greatly reduced and it’s now easier to deal with breakthrough pain. However my right knee has clearly decided to be a horrible bitch about things. It’s swollen and it’s grinding and it won’t reliably bend and it hurts whenever I do foolish things like stand up or sit down or roll over in bed.

And something else has decided to flare up. Something really painful. Something that I really need to see a doctor about but I was too late this morning to get an appointment and I have stuff to do tomorrow that can’t be moved and if I leave it till Friday to see the doctor then I will have reached my own personal defcon 10 of pain.

That’s not 10 out of 10 on the pain scale. That level of pain is just screaming until it stops. Defcon 10 is out of my mind with pain, distraction and frustration. It’s a result of having to just put up with a level and type and location of pain that no-one should have to put up with. Defcon 10 is dangerous because it makes me want to knife 40 people at random. Hopefully the CBD oil will help with this kind of pain.

If anyone is interested I will post links to the kind of vape pen, cartridges and oil I’m using.