This week I lost the same 200g that I gained last week and lost the week before. I’m not complaining because I’ve had to step back from the diet plan I was following due to the ‘Beast from the East’ disrupting food deliveries.*
That’s not what I’m going to focus on today. I’m feeling a lot more thoughtful about how being a Spoonie ( a person with a chronic health problem, see here for an explanation of Spoon Theory) affects attempts to eat healthily.
You’d think that having a chronic health problem would make it more important that I stick to some kind of healthy eating plan and you’d be right. But you’d also be wrong because for us Spoonies everything has to be balanced. Any spoons I spend on meal planning are spoons I won’t have later should I need to pay some bills. Any spoons I spend on preparing a nutritious meal are spoons I can’t spend on cleaning up afterwards.
Often the Spoonie life means half assing a bunch of things because if you spend the spoons to do any of them properly it’ll be the only thing you do that day. All those partially solved problems become a cascade of further problems. So instead of doing the laundry OR cleaning the kitchen OR working on my novel I end up putting some stuff in the tumble dryer, wiping down one kitchen surface and fixing exactly one scene. So the next day I have laundry that’s not put away, a hob and a sink that still need cleaned and one slightly less shitty scene that mainly succeeds in making the rest of the novel looking bad.
Not that any of this means I’m giving up on my diet. I’ve got a doctor to prove wrong.
*For people outside the UK the ‘Beast from the East’ was a polar vortex weather system that plunged the whole country into arctic temperatures for a week. It wasn’t just that the temperatures were very low it’s that the temperatures were that low pretty much everywhere so the road clearing services were stretched very thin. It also didn’t help that so much snow fell that our usual tactic of gritting the roads so that the snow melts faster and vehicles can maintain grip was rendered useless.
Notebooks, and journals, and organisers.
There’s something so hopeful about ordering a new planner or diary. Particularly if it comes with some sort of promise to sort out your life and help you to ‘get things done’. When the thing arrives there’s all that lovely busy work involved in filling in details and making plans and committing to goals. It all feels so very productive.
And none of it fucking works.
At least none of it works reliably for me personally. Your mileage may vary. Possibly you, dear reader, are not disorganised trash like me.
Putting all my appointments in a Google calendar that is synced to my phone calendar mostly works. It’s at least 90% successful as long as I remember to put the thing on the calendar and set an alarm for a couple of days before. But it only works for appointments.
As a person with ADHD, depression and fibromyalgia I need to be organised. I need to plan ahead. As a person with terrible executive function problems I am shitty at planning ahead. It’s not unusual for me to get up at the crack of 2pm and spend half an hour setting goals and making lists of the stuff I need to work on to achieve those goals and then immediately go and do something else instead.
I am so bad at following through that I could make a todo list that includes reading a book that I’m supposed to be reviewing, catching up with the Unbeatable Squirrel Girl comic and eating some chocolate and it would lead to me scrubbing the kitchen sink.
It’s starting to feel like I only ever achieve things by accident. I’m pretty sure that my 9+ first drafts and my one completed novel only exist because I was supposed to be tidying the house. I’m wrapped in a crochet shawl that only exists because I was supposed to be editing. I’m blogging because I just decided to crochet a hat. Earlier today I cleaned the hob rather than blog.
And it wouldn’t be so bad if I was doing any of these things properly. But i’m not. My books aren’t published, my blog is kind of bland, my kitchen is still a mess and my crochet mainly results in me spending too much money on yarn. But I recently backed a kickstarter for a really nice planner and this one has a SYSTEM. Surely this is the one that will finally work.
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I have gained 200g. That’s the same less than statistically insignificant 200g that I lost last week. This week I’m menstruating so it could easily be that.
I am thoroughly pissed off with this diet. It’s partly because I’m not happy with my attitude to food right now and partly because the “Beast from the East” is making it impossible to properly plan my shopping.
I’m disabled so I rely on food deliveries to get the bulk of my groceries. I get a few things locally but my condition is variable so I can’t rely on being able to get out to the shops. So I can get a bit intense when Sainsbury decide to cancel deliveries with no notice or warning. Not even an email to say “No food for you. Soz,” with a handy ‘reschedule for a day when the weather isn’t trying to kill us all’ link to click on.
My options now are to come off the diet and eat all the store cupboard stuff that doesn’t really fit it until I can get a delivery or to go on the ‘I can’t eat anything because Sainsbury is run by bastards’ diet. Or find out how many of the local takeaway delivery drivers are nuts enough to be driving in this weather.
Wish me luck.
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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This week I lost 1.3kg (just over 2 and a half pounds). My total weight loss is now 14.4 kg (31.6 pounds or 2 stone, 3.6 lbs). After experimenting with the positioning of my scales I can be fairly sure this is genuine weight loss but of course much of this week’s total will be down to fluid being forced out of my legs by my compression tights.
Wearing my compression tights continues to be a massive pain in the arse. And everywhere else. Just getting them on uses most of my spoons meaning that I don’t have much left over for chores or writing or working on the thing I’m crocheting for my daughter’s birthday. Or even for reading the book I’m reviewing.
More and more I’m questioning why I’m even on this fucking diet. Let us not forget that calorie restriction is not a treatment for lipoedema, that my value is not inversely proportional to my size, and that no level of weight loss is going to magically render me decorative enough to be societally acceptable. I only got on this damn treadmill because weight loss is a hoop that I have to jump through in order to access the treatments that actually do work.
I am trying to commit to more exercise. Not to lose weight but because I want to be stronger. I’m thinking of taking on a 100 squat 30 day challenge. The idea is to work up to 100 squats a day (any kind of squat counts) and then keep it up for 30 days. I have no idea if this is a good idea but I do think it’s important to have goals.
I’ve noticed that people actually read this blog. Some of you, judging by comments on Twitter and Facebook and from the likes on the posts, read it regularly. Why?
The question is not triggered by false modesty and I’m not exactly fishing for compliments. This is my round-about way of getting you lot to do my job for me. I want to do a review of this blog in 2017 and that means finding the best posts. Since I am a terrible judge of my own writing and you people seem to like at least some of it I’m delegating the job of picking the best.
Are you here because of Spoonie posts, or Zeppelin forecasts, or because I am occasionally funny about writing and politics? If there was a post you particularly liked, or stuck in your mind, or found useful then please let me know what it was. If you’ve got any requests for 2018 then you can tell me those too.
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?
One of the problems with chronic pain is that it’s a lot harder to treat than acute pain. With acute pain you can just knock it back with strong painkillers and then wean yourself off the painkillers. Acute pain also has a limited duration so there’s the option of putting up with it till it goes away.
Chronic pain isn’t going anywhere and over time the painkillers tend to become less effective. My pain is variable so I deal with it by only medicating it when it gets particularly bad and ignoring it the rest of the time. This is not ideal.
For the last week I’ve been experimenting with CBD. That’s cannabidiol which is a non-psychoactive component of marijuana. That means it doesn’t make you high. There’s some evidence that it can be used to treat anxiety, inflammation and pain. Sadly it’s the THC in cannabis that works really well against pain but that’s the stuff that makes you high and you can’t buy that legally in the UK.
I’ve been vaping CBD oil as it’s the fastest way to get it into the system. I’ve been using it to deal with those times when the pain suddenly gets bad. Oral painkillers can take up to 40 minutes to take effect so something quicker would be handy. I’ve also been using it when I’m feeling anxious as anxiety can make Fibromyalgia worse.
It seems to be working. It’s been helpful when joint pain hits while I’m out and about. It’s too early to be sure but I’ll keep you updated.
For now I’m using a disposable vape pen in blackcurrant menthol flavour. I was dubious about that as a flavour combination but it’s surprisingly nice. I will probably move to a refillable one now that I think it’s worth the money. If anyone else wants to try the same supplier I’m using I have a referral link. If you use it and you buy stuff I get a discount. Here’s the link – https://cbdlifeuk.com/?raf=ref1943134.
There have been some proper trials done on CBD that showed a positive effect. However only a couple have been large scale double blind trials. Most of the studies have been of quite poor quality. So I would suggest that if you are going to try it you take it slow, don’t spend loads of money on something that might not work for you.
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.