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.
Today I got a report from a beta reader about the opening of the novel that I’ve been querying and it’s making me wonder if I really am deluded about being a writer.
There’s a grammar problem right at the beginning that’s bad enough to drive off an agent and I can’t see it even now that it’s been pointed out. Also it’s apparently unclear who kills who. Which is a huge problem. If I can’t make that sort of thing obvious then what hope do I have for the more complicated and nuanced stuff.
I don’t know how to fix any of this. I don’t know how to build the skills necessary to fix it. I don’t even know if I should fix it.
I have so few spoons on any given day. Maybe I should stop wasting them on something that I have so little aptitude for. My house is a mess. My body is a wreck. Maybe I should be concentrating on those instead. But what’s the point of a tidier house and a slightly less fucked body if I’m not making or doing anything?
Maybe I’m overreacting. Maybe I’ll look at the comments tomorrow and I’ll know how to fix it. Maybe the beta reader is wrong about some of it.
Maybe. But it seems much more likely that I just suck at writing. I suck at most things so it shouldn’t be a surprise that I suck at this too.
And so we close out the year with another email from an agent who isn’t passionate enough about my novel to represent it. More than a year of querying and I haven’t even got a detailed rejection yet.
I know that there are famous writers who got rejected a lot before they got their first agent/publisher. I also know that there are a lot of deluded people sending terrible novels to every agent and publisher on the planet and wondering why no-one is backing a dump truck full of money up to their house to publish it. It’s getting harder to believe that I’m in group one and not group two.
From here I think there are three options. Keep querying this novel in the hope that further down the list there might be an agent who’d be interested. Give up on this novel for now, finish something else and query that. Give up on traditional publishing and self publish it.
There are problems with each of these options. I’ve already queried most, maybe all, of the agents who’d actually be interested in such a weird novel. It’s the first in a series and most of my other novels are in the same story universe. If I can’t interest people in the first one they’re unlikely to care about the rest. I really don’t want to self publish and once I’ve self published the first in a series I’m unlikely to find representation for the rest unless the first one is a huge success. I don’t have the resources to ensure that success.
Am I nuts? Could it be that I’m just not very good at writing? Are my novels bad? Have I been deceiving myself? How do you know if your novel is bad?
When you’re a Spoonie ( person with a chronic life limiting illness but see the link for more details) people tend to assume that your problems all come directly from your illness without ever seeing how the secondary problems proliferate.
You’re in pain and the pain means you can’t sleep and the lack of sleep causes its own problems. The constant mental work of managing your very limited mental resources end up costing more of those resources. Your coping mechanisms have coping mechanisms.
At least once a year I burn or scald myself because my brain is on automatic pilot and I’m trying to do something that’s necessary for me to function.This time I stuck my whole right hand into my coffee filter cup while it was full of near boiling water. Then tipped the whole thing, grounds and all, all over the kitchen. Then I forgot I was wearing rings and had to strip them off after my fingers had started swelling.
I got lucky. Most of the swelling went down with a combination of cold running water as long as I could stand it and then sitting with an ice pack on the remaining swelling. But it’s annoying. And I never got my coffee. And I have a enough swelling on my right ring finger that it’s put a serious dent in my typing speed.
Now there’s no obvious line between Fibromyalgia and a burn. But I’m pretty sure that this burn happened because one of the consequences of Fibromyalgia is having to go about my day with a considerable portion of my brain either distracted by pain or working to manage my symptoms or my spoons.
Most of the Spoonies I know pick up multiple injuries a year as a result of their primary condition. Falls because their balance is wrecked, scrapes because they’re not fully aware of their surroundings, self inflicted cuts caused by trying to prep food while half asleep. And the worse bit usually isn’t the physical injury. It’s feeling like an idiot. Here I am, a full grown adult, and I stuck my hand in scalding hot water out of my own incompetance.
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?
This week I put the half kilo I lost last week back on. I know why it happened. I had a cheat day at the weekend and I made one very bad choice and that resulted in eating a whole large pepperoni pizza.
If anyone thin is wondering why there are so many fat people in the world and why so many diets fail and why we make such a fuss about weight loss and act like it’s hard when it’s just eat less and move more let me explain. I made one bad decision and it cost me two weeks of progress. Now it was a very bad decision and I should have known better but it was still one decision. One pizza. Two weeks.
This is why you’ll sometimes see someone break a diet in an apparently small way and then act like it’s all over and there’s no point and I’m just going to go and inhale this entire cake. That’s not sensible or entirely rational but when a single decision made in a moment of weakness and tiredness can ruin two weeks of effort I think it’s at least understandable.
I think it’s particularly understandable given how little return we can get for our effort. Until this reversal I’d lost 10kg (22 pounds) and my reward for that success was that my rings keep falling off and my face looks a bit thinner. That’s it.
Don’t worry about me though. I’m back on the diet. I’m developing a better handle on how far I can push it on a cheat day without reversing my progress. I now know that the sweet spot is somewhere between a panini and a whole pizza.
The Fucking Diet page.
I’ve been on the diet for several days now and it’s been interesting. I’ve been using Myfitnesspal to track my food intake. Since I’m on a low carb diet I’ve mainly been paying attention to carbs but the app also tracks my calorie intake (although it’s actually tracking Kilojoules because I set it up wrong) and I’ve been well under every day.
The problem with the induction phase of a low carb diet is that it does tend to make you grumpy. And by grumpy I mean likely to fly into a murderous rage with very little warning. It also takes a while to get into the habit of it. You spend a lot of time staring into the fridge wondering what you can eat and then end up just nibbling on cheese.
I still don’t have functioning scales but my Mother-in-law has offered to give me a new set for my birthday. That means I’ll be able to tell how much weight I’m not losing. I jest. I probably will lose some weight. It’s just depressing to know that it will never be enough.
And that’s the real reason that I’m so pissed off about going on this diet. No matter how hard I try, no matter how much weight I lose I already know that it’s not going to be enough. The Lipoedema means that while I might get thinner I’ll never be thin enough for society. The hangover from my youthful dalliance with anorexia means that I’ll never be satisfied with what I see in the mirror. The additional weight from the Lipoedema fat cells and all the fluid they trap means that there’s no point even asking about knee replacement surgery. It’s highly unlikely that my weight loss will do anything to fix any of my underlying problems.
This diet is just me torturing myself in the hope that if I can stand the torture long enough my doctor might take me seriously.
link to Diet Update 1
I got the form rejection email today from the last agent I queried.
Once again I find myself asking if I’m mad to even try to find an agent. Even if the novel is as good as I think it is that doesn’t make it sellable. If no-one knows how to market it no-one is going to want to publish it. If no-one is going to want to publish it why would an agent want to represent it?
I am so bad at dealing with rejection and I’m not going to get better at it. As I said previously this is just the way I’m made. I’d give up on the dream of publishing if I could think of anything else to do but I just don’t have any other saleable skills. Writing is starting to look like just another one of my non-saleable skills.
It doesn’t matter how good you are at something. If no-one wants to pay you to do it then it’s not a sustainable life choice. I can’t afford for writing to be just another one of my hobbies and I can’t stand putting all that work into something that no-one will see. I don’t want to die knowing that all I did with my life was to occupy the time between cradle and grave.
The best evidence I’ve seen for the simulation hypothesis is that my life only makes sense if I exist for the amusement of some cruel and distant intelligence.
I had a doctor’s appointment this week in an effort to get something done about my lipoedema. This is a disorder that affects 11% of women and post pubescent girls. It means that my body lays down dysfunctional fat cells in my legs and upper arms (and possibly bum, hips and lower abdomen). These fat cells are unaffected by diet. They can’t be shifted by anything short of surgery. The fat cells also trap fluid leading to secondary lymphoedema which makes my legs even more swollen. There’s no cure but the progression can be slowed by compression garments and partially reversed by liposuction.
It’s usually triggered by hormonal changes. In my case it started at puberty and got much worse after childbirth. That means that it’s been undiagnosed and untreated for more than 30 years. For all that time I’ve been blaming myself for a weight problem that was in large part outside my control. According to the NHS website calorie restriction is not a treatment for lipoedema (according to most experts it’s not even a good treatment for obesity).
You’d think it would be simple. Get a diagnosis, get referred to a specialist, get fitted for compression garments and get on the waiting list for surgery?
Ha. You must be new here. I can’t get an official diagnosis because there are no specialists in Fife or Lothian. There may be no experts in Scotland. I can’t get fitted for compression garments because the off the peg ones don’t come in large enough sizes and the nurse says the doctor needs to measure me for the made to measure ones and the doctor says she doesn’t do that and I probably shouldn’t get them without first getting a Doppler test to prove my circulation is good enough but the Doppler sleeves won’t fit over my legs.
Did you get all that? I can’t get treatment for the condition that causes hugely distended limbs because my limbs are too distended.
And I can’t get surgery because it’s not available on the NHS because liposuction is a cosmetic procedure.
So my only option is going back to calorie restriction and hoping that there’s enough healthy fat in my legs that removing it will somehow make a difference. So I’m going back to a treatment that has a 95% failure rate for the thing it’s actually supposed to treat and doesn’t work at all on the problem I want treated. And it’s only taken 4 doctor appointments and 2 nurse appointments to find this out.
I suppose if I lose enough weight that my face, hands and feet become noticeably emaciated then maybe I’ll be able to get a doctor to take the problem seriously. Maybe I’ll be able to starve myself into organ failure while still being clinically obese. I might even get mentioned in the medical literature. Fame at last.
I don’t have a problem with the Body Positivity movement as long as it’s your body we’re talking about. You look fabulous, by the way.
I just can’t be positive about my body because there’s nothing positive about it. My problem is not that I’m fat. Fat is not a problem. My problem is that my body is a worthless piece of toxic trash that has been torturing me almost from birth.
I hate my body. Everything I’ve achieved I have achieved in spite of it. All it does is slow me down. I can’t rely on it. It turns the food I eat into dysfunctional fat cells that lock the energy away. I can’t access that energy and the cells just build up on my legs looking fucking hideous, hurting and stopping my joints from working.
I’m trapped in this fucking cage. It doesn’t work. I can’t fix it. It’s made my life a living hell. There’s nothing I could ever have done to fix it. I’ve been struggling my whole life, blaming myself, thinking that I was a failure and the whole time it’s been beyond my control. I was doomed from the start.
If there was any justice in the world I’d be offered a do-over of some kind. But there isn’t so I’m just stuck here until this body stops working completely. I feel like my entire life has been wasted. Not just because this body sucks but because I’ve wasted so much time blaming myself for something that was outside my control and trying to fix something that was never going to work.
No more. Fuck this body. I’m done putting up with its bullshit.
Well I say that… but even as I type this it’s making a spirited attempt to get me to stop. My back is cramping up. The pain is all I can think about. My body is demanding that I stop typing and go back to bed or something. Realistically there isn’t much I can do about it.