Sunday Update 14/04

This week I am still recovering from my visit to Falkland Palace last week. I’ve had several days where it’s been hard to get up, I’ve been tired all day and I have accomplished fuck all.

It probably didn’t help that I had an epic (for me, at least) journey to Dunfermline first thing on Monday morning to get my boobs checked out. As I mentioned in my post about breasts and breast health I had a bit of a scare so I wanted to be sure that there was nothing wrong. It turns out that they’re absolutely fine and I probably don’t have to worry about a breast cancer gene in the family.

The journey was an enormous pain in the arse. I had to get up at the sort of time I’d normally be going to bed and then get two buses. Changing buses involved standing around at a freezing crossroads for an unreasonable amount of time. After a couple of hours of poking and scanning I had to go home, which should have been easier in theory because I didn’t have to worry about an appointment time. Somehow it still involved standing around waiting for a bus and wondering if it was ever going to show.

The other annoying thing this week is that my spouse has been ill and I’ve had to drag myself to the pharmacy and the shops to get supplies. I don’t want to go into precisely what’s wrong with my spouse because I respect their privacy but it’s not serious or life threatening as long as it gets treated. It does mean that I’m feeling particularly useless because I can’t take care of them the way I feel like I should.

Procrastination Watch

The week wasn’t a complete bust. I read 4 chapters of Death Will Find Me by Vanessa Roberson, listened to the first half of Lies Sleeping by Ben Aaronovitch with my spouse, and a chunk of Fear and Loathing In Las Vegas by Hunter S Thompson solo. I also wrote about a thousand words of my current work in progress and worked out how to fix a scene with a difficult overlapping conversation. I’ve also been working on a large triangle shawl for my Mother but that might count as procrastination.


Sunday Update 17/02

This week I do not have writer’s block. Because writer’s block is not a thing. Also because writing isn’t the problem. Editing is the problem. Is there a word for that thing where you open Scrivener and jump back and forth between various scenes not changing them in any way and then minimise the window and play Minecraft instead?

I’ve reached the stage of editing where my current draft is like a tangle of yarn. When you’re untangling yarn you have to do it in the right order or you just end up making things worse for yourself. I’ve you pull on the wrong loop you just turn the rest of the tangle into a snarl. Maybe you end up with knots. Maybe some of the knots have to be cut out.

Writing earlier drafts has not prepared me for this. When you hit a problem with a first draft the solution is nearly always to just jump in and write your way out of it. When you hit a problem with a second draft the solution is usually to either change the order of scenes or write an additional scene. The worst thing that can happen is that you have a bunch of words that you can’t use in the current project or you spend five minutes fixing continuity.

I’ve already made editing errors on my current work in progress that have cost almost as much work to fix as an entire first draft. I had to rewrite a couple of scenes that I’d already rewritten once. Then I had to move one of them. Moving a scene this late in the project is not a five minute job. It causes a cascade of changes to other scenes and I have no idea if moving the scene was right.

At the same time as I’m working out how to move these scenes around and what needs to be changed to fit I still have major problems with the last part of the novel. Do I finish the rewrites of the earlier scenes first or do I fix the the last part? If I pick the wrong bit to work on then I could be creating more work for the future.

Or maybe I need to take a long hard look at my process. Maybe the real problem is that I don’t have a robust enough back up system so it’s hard to just revert to an earlier version?

The other thing I’ve been thinking about this week is sleep and how maybe I should stop trying to resist it and just go to bed every time I get sleepy.

When I first became ill, or at least no noticeably ill that I couldn’t continue to pretend that I wasn’t ill, I was diagnosed with Chronic Fatigue Syndrome (CFS). When I was later diagnosed with Fibromyalgia I just sort of assumed that I the CFS was a misdiagnosis. Now I’m not so sure. The waves of tiredness that have been overcoming me recently do sound a lot like CFS. Maybe I have both. Which means I have to do some research into the current thinking about CFS and how to manage/treat it.

It would be great if the next thing that goes wrong with my body could be something simple, treatable, and uncontroversial. I am so over chronic, untreatable disorders that a significant minority of the medical profession prefer to pretend don’t exist.

When Executive Dysfunction Attacks.

On one of my Sunday Updates I wrote about how bad my executive dysfunction has been recently and it continues to be pretty difficult to deal with but I’ve noticed something weird. It feels like I’m trapped in a mire of dysfunction in which I’m unable to get anything done. It feels like I’m just lying here, immobile, unable to function, in an extreme state of procrastination, but I just crossed three things off my to do list. All three things done today.

You might be wondering if the list was some kind of bullshit productivity hack – make a list of all the things you’ve done today so you won’t feel useless – but that’s not what it was. That is a thing I do sometimes. Creating a ‘done’ list can make you feel better about how you’ve used your time. Often the problem isn’t that you’re doing nothing it’s that you’re doing stuff other than the stuff you think that you should be doing. Again, that’s not what’s happening today.

I have done things that I intended to do, even against my own resistance to doing them. I’ve done research, communication and household chore tasks today. I even did a bit of work on my current novel (Project Kindness). But it feels like I’ve done nothing.

Am I feeling like this because I haven’t done enough? Is there something more important that I’ve forgotten to do? Am I beating myself up about this in order to not think about something else? Or could it be that part of my Executive Dysfunction problem isn’t Executive Dysfunction at all but a kind of irrational guilt about being disabled? I still can’t accept how little I can do.

Additional note.

I wrote the first part of this several days ago but didn’t post it because I wanted to space out my posts and I’d written a lot. Today I sat down to edit it and finally post it on a day where I procrastinated leaving the house for so long that I didn’t actually get out and thus didn’t pick up my medication from the local pharmacy. Today I am not ticking things off the to do list. Today I am having trouble staying awake.

Maybe this is just the normal variations in life, amplified by my chronic ill health? All I know is that today it feels like every thought is wading through treacle to get to the front of my mind and maybe I shouldn’t expect too much of myself under the circumstances.

Sunday Update 27/01

This week my main challenge has been trying to get back into the habit of writing. It feels like I’ve forgotten how to write regularly if I don’t have a deadline of some kind hanging over me. Did I ever know how to do that? Have I always relied on an external pressure to keep me writing?

It’s not that i’ve been avoiding writing. I’ve written a couple of blog posts, done a short writing course on skillshare, discovered the Story Grid system for editing, started a skillshare course on essay writing run by the glorious Roxane Gay and spent a lot of time looking at my writing planner. But that’s all writing adjacent activity and not the writing I actually want to be working on.

I’ve also been ill. I’m fighting off an infection, taking antibiotics, and dealing with a rash on my left hand that’s affecting my ability to type. I can’t tell if the rash is contact dermatitis, or an allergic reaction, or something else. I hope it’s not shingles. At least I know it’s not caused by the antibiotics because it predates the first dose. I’ve also been struggling with spasms in my arms that not only affect my typing but also my ability to crochet. It’s as if my own body is trying to keep me from doing anything useful.

I have written a bit this week. I have continued to make things in the face of my own body’s attempt to stop me. I’m just dissatisfied by how little I’ve done. I want more. I want to be productive. Why am I stuck with this recalcitrant body and semi-functional brain? It feels like I’m wasting my life because I get so little done. I know I could make great things if I could just do stuff. It’s so frustrating sitting around waiting to be able to do… just… anything.

It’s hard to communicate how angry I am that my life is like this. My creativity is constantly hamstrung by my frailties and every attempt to overcome these frailties backfires and makes things worse. The more I push myself the sicker I get.

I have a duty to all these characters that I have swimming round in my head. When I die I’ll take them with me unless I can get them out of my head and onto a page. But I also owe it to them to do a good job so I have to keep going back and making what I’ve already written better. It all takes so much time.

Real breasts

Today I come amongst you* to talk about boobs. All you boys sniggering at the back may want to leave now because I’m not here to talk about real versus surgically enhanced.** I’m talking about the reality of having breasts rather the fantasy where we sit round all day feeling them in front of a mirror. This may not be a fun chat for those of you who want to hold onto your mammary fantasies.

For the last three days I’ve had a painful, lumpy swollen boob. I finally got an appointment to see someone about it today and now I have antibiotics. That’s because I apparently have an infection and not, for example, cancer. This means my boob probably isn’t going to kill me (in the near future at least).

People who don’t have boobs might think that worrying about mine killing me is an over reaction to a lump. No.

My Grandmother survived a radical mastectomy back when the treatment options for breast cancer were losing your entire boob, plus the lymph nodes from your armpit, plus some of the muscle from the top of your arm or a slow and painful death. Her left hand shook for the rest of her life but she lived into her 80s with no recurrence.

My aunt had an operation that was a little more surgery and a little less butchery. For a while it looked like she’d beaten it too but the cancer got her in the end.

My Mother and my other maternal aunt are fine. There’s a good chance that if there is a breast cancer gene in the family neither of them inherited it. If that’s the case then they can’t have passed it on to my cousin or I. So our chances of developing breast cancer drop all the way to 1 in 8.

I have somewhat ambivalent feelings about boobs. On the one hand they are great, on the other they might kill you. They look fantastic but they’re also kind of a pain in the neck, literally if they’re on the larger side. Mine are fun to hold and look ok and have breastfed two kids but they are costing me a fortune in bras (see this post for part of the reason why).

Breasts are these visible signifiers of gender that women are stuck with. They hang out in front of us like a massive sign that says “This person is female. Feel free to talk over her, ignore her expertise and pay her less.” They’re simultaneously public and private. Everybody gets to have an opinion about them but we’re supposed to care a lot about who gets to see them even when we’re busy trying to stick bits of them in a baby’s mouth.

And they do, occasionally, try to kill you. Even if they’re not very big. Even if you’re not a woman. Even if you’re a woman now but you were assigned male at birth.

Everyone is born with mammary glands. It’s female hormones that make them grow into breasts. Anyone who still has mammary tissue is at risk from breast cancer. Yes that does include men. Even the flattest chested, most masculine, cis dude can be stricken.

Check your chesticles for lumps, people. If you find one get it looked at. Breast cancer should never be fatal because none of us needs tits to live. If caught early enough it should be possible to remove all the cancerous tissue. But that means actually doing something about the symptoms. Also keep an eye out for dents, changes to your nipples, discharge or anything else weird.

And try to remember as you go about your day that breasts are just mammary glands, fat and optional artificial enhancements. They don’t contain any morals, or mystical femininity, or inferiority, or l33t domestic skills. A person’s value is in no way linked to the size, shape, or construction of their tidies.


*Pun absolutely intended.

**Actually, don’t go, I have a message for you at the end.

Sunday Update 20/01

This week I have spent a lot of time with planners and diaries, trying to organise myself.

I do not organise well. It does not come naturally to me. Partly because I find it hard to keep my mind pointed in any one direction for any length of time and partly because planning is pointless if you don’t have the resources to follow it through. But then everything I do is pointless so I might as well add planning to the list.

I’ve also spent a lot of time this week on Project Kindness, the spies vs gods novel that I’ve been working on. I realised that I had to go back and rewrite a couple of earlier scenes to make the point of view more consistent. When I’ve fixed those scenes I’ll be able to get back to finishing part six of the third draft.

I’ve been playing a lot of Destiny 2 on the PS4 and I think I have some thoughts about it that I want to blog about. Hopefully I’ll manage to do that this week.

Health-wise this week has sucked. I keep getting hit with incredible tiredness that seems to come out of nowhere and requires me to lie down and maybe go to sleep. When it hits I can’t keep my eyes open. I can’t tell if this is just the latest Fibromyalgia bullshit or if it means I’ve picked up some new health problem.

In fact I had to stop typing after that paragraph and go and lie down because I couldn’t keep my eyes open. Then I had to call my spouse to help me get my bra off because my triceps just weren’t working. I’ve noticed problems with my upper arms recently and I’ve been trying to stave it off with exercise. But there’s a limit to what I can do. I don’t have the energy to exercise much and if I push myself too much my arms will be useless for the rest of the day.

I wasn’t even trapped in a regular bra. I’ve mostly given up on those because I can’t reliably fasten them without help. The bra that tried to strangle me was a pull over the head sports bra. I’ve spent a lot of money on those as replacements for the already expensive bras that I couldn’t get on.

I now have a drawer full of expensive bras that I either can’t get fastened or can’t get off. I do not want to give up on bras, and nobody wants to see me out in public without one, but I’m not sure I can afford any more. If any of my spoonie sistren are out there and you have any tips on bras that are easy to get into and out of and will fit my mighty 44H chest please let me know.

The other thing I’ve been doing this week is research into self publishing, I’ve taken a few tiny steps in that direction. I still don’t know if it’s a path I want to follow but at least I now have a slightly better idea about what that path looks like.

So once again I have spent a week doing… stuff but I don’t actually have much to show for it.

Sunday update 23/09

It’s still Sunday so this is not late.

This week I have mainly been consuming media. Which makes it about the same as every other week, come to think of it. I finished listening to the audiobook of High Rise by JG Ballard which will definitely be getting a blog post. I finally got round to watching the first Kingsman movie, which might also be getting a blog post. I have been playing a lot of Destiny 2 which will, again, be getting its own blog post.

I also got out of the house. I went all the way to Edinburgh for a milkshake. Which might seem an odd choice given that I’m lactose intolerant but in my defense it had rum in it and I was consuming it in the presence of a friend. That friend gave me a birthday gift, a copy of Art Matters by Neil Gaiman, illustrated by Chris Riddell. And a reminder that at least three people care if I finish my current novel.

Yes it was my birthday this week. I am a year older and supposedly a year wiser. Not that I’ve ever claimed to be wise. I’d settle for being slightly less foolish but I am doubtful that it applies.

My mother continues to recover from her injuries. Regular readers will remember that my mother fell over her front steps and broke both arms. She broke her left forearm and wrist and her right shoulder. She already had an operation to pin her left arm back together. She’s recovering well from the first surgery.

The doctors took much longer to decide what to do about the other arm because she’d broken the top of the humerus bone, she has osteoporosis and they thought she might need a shoulder replacement. She had the shoulder replacement op this week and the break turned out to be worse than they thought. The top of the bone was shattered and she needed a different kind of replacement than they’d been expecting. She is recovering well from this new operation but it’s going to be a while before she’s back to full health and she’s going to need additional support.

It’s frustrating that there’s very little I can do to help. She can’t move back into her own home until her shoulder has healed. She can’t stay with me because my house is no more suitable than her own. It’s the same problem with the rest of the family but at least they can help to adapt her house or clear it for sale so she can move somewhere more suitable. I’m just stuck here too far away to help and too broke and disabled to travel there regularly. All I can do is maybe crochet her some ponchos and that doesn’t seem like enough.

A delayed update

Two weeks I managed, two weeks before I missed one. Pathetic.

This update is late because my Mother fell down last week and broke both arms. We don’t do things by halves in my family. We either survive unscathed or we need to be literally pinned back together. She’s going to be fine but I’ve had to travel back up north to do my bit to help out. She’s doing remarkably well for a woman in her seventies with multiple breaks but it’s still going to be a long road to full recovery.

It’s funny. I’ve done loads of stuff in the last week but I really can’t bring any of it to mind. It’s hard to think about anything else. I keep coming back to the thought that she’s so lucky to live in the era of modern medicine and so am I. It’s possible that she will make a full recovery and go on for years as a cyborg grandmother. Just 20 years ago we wouldn’t have been contemplating a full recovery. 50 years ago she’d have been lucky to survive. 100 years ago she would have had no chance. And if she’d fallen just slightly differently my brothers and I would be arranging a funeral rather than researching shoulder replacement surgery and trying to sort out a handrail for her front steps.

We’re also lucky that we live in a country with socialised healthcare. My mother will not have to pay a penny for her hospital stay no matter how long it is. The aim of her care will be to get her back home in the best of health so she can get back to being a grandmother. No one in the hospital will be looking for excuses to charge for anything.

Stay safe and healthy out there/

The pain difference.

I’ve been thinking this week about pain. For most people pain is an alarm signal from their body. It exists to bring attention to something gone wrong or as a warning to not do that thing again.

For those of us with chronic pain conditions that signal can be a constant background noise. When an alarm sounds constantly it becomes stripped of its meaning. It doesn’t stop being irritating but it does get downgraded from a stab of panic, and the accompanying burst of adrenaline, to a dull, grating, near-constant anxiety.

For the most part it’s not pain that stops me from doing things. Almost everything I do is painful. Some days are more painful than others and some kinds of pain are more tiring or distressing than others but that’s not the problem. It’s the mental strain of dealing with the pain that holds me back.

And for most people with a chronic pain condition there’s also the lying. Or perhaps I should call it acting or maybe pretending. There’s usually no point in telling people how much pain we’re in. They can’t do much to relive it and most of them don’t really care. It’s impossible to prove that we’re in that much pain so it’s easier for them to believe that we’re exaggerating.

There’s an underlying assumption that comes with civilisation that all problems are soluble. That’s why so many people want to believe that ‘Big Pharma’ is covering up a cure for cancer and that most unemployed people could find work if they just had the gumption. It’s so easy to fall into the trap of believing that we are the masters of our fate. People like me are proof that bad stuff can happen at any time and for no reason.

Most of us cover our pain up. We don’t talk about it. We minimise it, downplay it and lie about it if we have to. Sometimes we do that when people could help. Sometimes the pain is less painful than watching someone else feel bad about the pain. And there’s always the fear that if you’re honest about the pain that you’ll drive people away. Either because they don’t want you to be dependant on them or because they can’t bear to watch you suffer.

Well I think I’ve depressed everyone enough for one day. You may now go back to whatever you were doing before I distracted you. But if you feel like buying me a coffee to cheer me up you can visit the Ko-Fi website to do it.

Once again my body betrays me

Yes it’s a very dramatic title. Unfortunately it’s also true.

I am typing this very slowly because there is something horribly wrong with my right thumb. Yes I am right handed. How did you ever guess?

My thumb is swollen, itchy and sore. It won’t bend properly and it looks like the knuckle has somehow slipped round the side of it. It’s incredibly distracting and it means that I can’t do any of the things I normally do to fill the day. No computer games, no crochet, chores are even harder than usual and typing anything takes ages.

Yes I have sought medical attention. The current working hypothesis is that there’s an infection under the skin and pressing on the joint. I’m back on antibiotics. If they don’t work by Friday there will be blood tests. It might turn out to be gout. Because my body never met an embarrassing and poorly understood health problem that it didn’t want to try out.

Which is all very annoying because I should be working on the novel I want to pitch for Blood Scotland. Or the pitch. And I’m not. Because just typing this little bit has fucked my right hand up even more.