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.
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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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.
But improving every day in tiny increments.
I don’t believe in new year resolutions. Picking some arbitrary, external marker as the starting point for a new beginning is just setting yourself up to fail. But it does seem like a good time to take stock of my ongoing attempts to be less crappy and more not crappy.
In April of last year I decided to start blogging 3 times a week and for the most part I’ve succeeded. There seem to be more people reading the blog but I can’t tell if that’s down to the regular posts or to the content of the posts themselves.
Since September I’ve been trying to manage my lipoedema. I’ve been seeking treatment via compression but although I the nurse ordered compression garments they haven’t arrived. When this blog post goes live I shall be on my way to an appointment with the nurse to find out what’s up with that. I’ve been following a diet to reduce the amount of non lipoedema fat. I’ve been trying to exercise because exercise is, on the whole, a good thing. I’ve lost 12.8 kg so far (just over 28 pounds or 2 stone).
I decided to get back into weight training and to that end I’ve been assembling the right equipment. I got a squat rack for Christmas from my mother-in-law and used the money from my father-in-law’s gift to buy a bench, a 5 ft barbell and two dumbells. Putting the squat stand and the bench together took much longer than I had hoped. It was exhausting and that doesn’t bode well for my exercise plans. However it’s all sorted now and I have started training. So far I’m just using the empty bar and working on my form. Squatting with a heavy bar and poor form is a great way to injure yourself.
In early December I decided to try trimming my undercut at home. My other half very quickly decided that using his beard trimmer to do that was unacceptable and bought me a hair clipper for Christmas. That seems to be working. It means that I don’t have to phone the hairdresser unless I want the top trimmed so it’s easier to look neat. In the long run we might even save money.
I read somewhere, I don’t remember where, that some writers swear by a daily practice of handwriting three pages of whatever you feel like first thing in the morning. The morning bit is potentially a problem but I’ve started trying to keep to a better daily schedule. Since I started the daily journaling practice I’ve written 10 out of 11 days. It’s too early to tell if it’s doing any good. So far it has mainly resulted in me begin forced to confront how bad my handwriting and spelling have got over the last few years.
I am continuing to try to get better organised in every respect but it’s so very hard. My ADHD seems to make sticking to a schedule far more difficult than it should be but also really important. It’s very hard to pick a solid marker of success or track improvement. So it’s a constant fight that never brings any reward but the moment you give up everything will probably go to hell.
So that’s where things are at the moment. I’m trying to be better in a lot of ways. Some of them seem to be working. Some of them might work but I don’t know yet. Some of the things that I’m doing are just so that I can feel like I’m doing something. But hey, you’ve got to do something with your time.
This week I lost 2kg. Of course some of that was the half kilo I put on last week so it’s only a net loss of 1.5kg (about 3 pounds). This is for a total weight loss of 11.5kg (25 pounds).
Still not much of a visible change though. In fact there’s so little change in my forearms that I’m starting to worry that I might have lipoedema there as well. At least I now have an appointment for the next stage of assessment for the lipoedema and it’s less than a month away.
With the end of NaNoWriMo approaching I think it’s time to think about a proper exercise plan. Going to a gym just isn’t practical but I do have a rowing machine. Now I just have to work out how to use it. I’ve got a bunch of weights for weight training but no bars to put them on, no bench and no squat rack. I suppose it’s a start.
Yes. But not the way you think.
I’m aware that I’m taking a risk starting like this but so be it. If I want to speak to the people who need to hear this I have to start this way. Some of my readers are going to feel attacked but please bear with me.
Depression is one option on a multiple choice test. For some of us this test is an occasional annoyance. For others it gets delivered every goddam day. The test looks like this:
Pick one option only
- Substance Abuse
Everyone starts out ticking the Denial box. Nobody wants to be depressed. Depression sucks. So you tick that Denial box. And then you tick it the next day and you keep on ticking it. But it gets harder. The box goes grey and then black and eventually no matter how hard you press down on the paper your mark won’t show up.
For some people that’s enough to go straight to the Depression box but some people think that’s for quitters. So some people go to option two.
Choose your poison. There are so many ways to pretend you’re not depressed. Alcohol will cover it up and the next day when you feel like shit you’re not depressed you’re just hungover. Hair of the dog will sort you out. If you don’t like booze there are so many drugs out there. Some will take high enough so you can’t feel the depression. Some will take you down so low that you won’t care. And if you don’t trust drugs there’s always food. Suffocate those damn feelings under handfuls of sweet, sweet food.
But over time the Substance Abuse box keeps getting bigger. It gets easier to tick. Eventually it gets it’s own denial sub heading so that you can deny that the substance abuse is a problem. And then comes the day when you realise that the words ‘Substance Abuse’ are written on a label. They’re covering something up. And when you scrape or peel the label off you find that underneath it is the word Suicide. Because substance abuse is just suicide the long way round.
That Suicide box is always tempting. It’s practically talking to you. Telling you that if you tick it right just once you’ll never have to worry about the damn test ever again. Some days that box is huge.
But if you care about the people around you that option is out of the question. So you move to the bottom of the test and you tick the Depression box. The hardest one. The one that means admitting there’s a problem. The one where you seek help and take pills and talk about your damn feeling. The one where you have to practice self care instead of pretending that you don’t exist. The one where you have to cut the toxic people out of your life. You’ll know the toxic people because they’re the ones telling you that you’re selfish or weak for ‘choosing’ to be depressed.
This week I weighed myself for the second time and my weight was down by 3.5 kg (just under 8lbs for Americans and just over half a stone for Brits). That’s not bad. You always lose more in the first week of any diet and the effect is particularly strong with low carb diets. I probably haven’t lost 3.5 kg of fat. I estimate that 3 kg of that is fluid.
The eating has been fine. I’ve been sticking to my plan and my calorie intake has been under the target every single day, well under on most days. More importantly I think I’ve been fine on the carb targets too. The only thing that’s worrying me about the food side of it is money. If I mess up on the shopping and planning side I’ll be in trouble. There really aren’t many cheap sources of protein. If I run out of food and mostly run out of money I’ll have to fall back on things that are high in carbohydrates and just not satisfying.
Now before anyone starts congratulating me please remember that this weight-loss is still meaningless. You might hear people, even doctors, say “Any weight-loss is good,” but this simply isn’t true. When I weighed myself the first time I was 23 kg lighter than I was at my heaviest (that’s 50lbs for Americans and three and a half stone for Brits). That weight-loss was real and I’ve sustained it for years but it doesn’t count because I’m still fat.
For me dieting is and always has been a hole with no bottom. It’s never going to be enough. It’s never going to fix the problem I have with the mirror. It’s never going to fix the things that are wrong with my body. Dieting is a means without an end.
Links to the previous updates: Update 1. Update 2
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
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.
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.