It’s very hard for me to get anything done. With depression, ADHD and chronic pain all pulling me back it takes a tremendous effort to achieve anything. Anything I want to do seems to involve far more steps than it should and each one of those steps requires a run up and that run up requires overcoming my executive dysfunction. Something that should take a week ends up taking six months.
I’ve been assuming that this inertia was the big problem with my life. I thought that if I could just do the things I wanted to do that I would experience success of some kind. I thought that it would be possible to get something back out of life if only I could work out how to put enough in.
I’m starting to suspect that I was wrong and that the inertia was really protecting me from the inevitable disappointment. I look back at my life and I see a lot of me working hard on something, fighting to overcome the inertia, doing the thing I wanted to do, and then nothing. It never goes anywhere.
Presumably I’m doing something wrong. It’s tempting to blame the inertia. It’s tempting to say that the inertia leaves me too tired to make the thing into a success. But maybe it’s not that. Maybe it’s that I’m just not very good at anything and the inertia knows. Maybe the inertia is trying to save me from the pain of being deeply mediocre.
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.
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.
If you have enjoyed this post then why not buy me a coffee with Ko-Fi?
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.
This week I put on a kilogram. I stuck to the diet all week long. I was well under my limit most days. I still gained a kilo. FUCK MY LIFE.
I suspect that it might be down to fluid. My right leg is really swollen at the moment. Like having difficulty getting into leggings that fit just fine 10kg ago swollen. It feels like a fucking balloon and my right knee is being a whiny bitch about it. I’m used to it complaining when I stand or sit but now it’s complaining while I’m in bed. Bitch, I am literally horizontal what more do you want?
It’s so frustrating to spend so much time and effort on this damn diet and get so little back. I don’t know what to do. I don’t have a plan except to keep going. The only other thing I could do would be to cut back on the carbohydrates even more but I really don’t want to do that because it’s just so miserable.
Hopefully it won’t be too long before I get referred to someone who can do something about the fluid.
This week I lost half a kilo (about a pound) and I am already underwhelmed with weight loss after only 4 weigh-ins.
I find the entire process of dieting deeply unsatisfying. It’s expensive, it takes ages, it requires constant vigilance, and it leads to me obsessing about my appearance.
I’d really rather not think about my appearance. I’ve tried very hard to either like how I look or not care that I don’t like how I look. Dieting invariably seems to involve more thinking about how I can’t fix the problems with how I look and I’ve so far failed to fix how I feel about that.
Dieting also means not using food as a painkiller or an antidepressant. It means having to deal with pain, both physical and psychological, that I could avoid if I wasn’t on a fucking diet. And I have to expand precious mental resources working out what to eat rather than say, just having some toast. I find myself just having a cup of coffee to suppress my appetite because then I don’t have to think.
Context is everything. I’m a fat middle aged woman so me deciding to drink coffee rather than eat seems like a neat diet hack. But it’s just as dysfunctional as a skinny teenaged girl doing the same thing. It’s neither healthy nor moderate and it may not be sustainable but who cares because the number on the scale is headed in the right direction.
For more information see Update 4 or the Diet Page.
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.
Keeping you all up to date on the things that I’m doing.
I’m continuing to experiment with vaping CBD oil for pain management. I’ve had two problems. The disposable vape pen I was using started to leak and I’ve had a major pain flare up.
Fortunately CBDlife* dealt with my complaint in a speedy fashion. I was going to buy a reusable vape pen anyway and they offered me a free oil cartridge as a replacement for the leaking pen and delivered the order the next day.
The pain flare up is a semi-regular thing where I get a muscle spasm in my upper back or neck that spreads to my arm (usually the left one). It’s horrifically painful and requires several days of painkillers, exercise and not using my arm for anything other than the special exercises. The CBD oil does seem to be helping with the pain so that’s something.
I’ve been working on one of the sequels to the novel I’ve been querying. I’ve now finished draft 1.5 and I’m going back and writing the extra scenes that I’ve realised I need. I reckon I have maybe 20,000 words of extra scenes plus one entirely new character that needs to be added.
My friend,Vanessa Robertson, has persuaded me to enter the pitch perfect competition at Bloody Scotland. I’ve been working on a 100 word pitch for the ‘finished’** novel. There’s a part of me that thinks it’s a bad idea because I can’t stick to a single genre and Bloody Scotland is for crime writing. She pointed out that I have nothing to lose and that my novel does have crime in it.
Querying has stalled because most agents are on holiday. However I do have my sights on two agents that I intend to query in the autumn. Both are as a result of personal recommendations.
I also recently got some idea of how steep the mountain ahead of me is. Vanessa was recently offered representation by an agent and she told me what the numbers are like. In a single year her agent will receive thousands but take on only a handful of new clients.
Can someone remind me why I ever thought writing was a good idea?
*If you use that link to buy stuff I will get a percentage back as store credit.
**I’ve decided to start calling the novel ‘finished’ because it can’t really be finished until it’s ready to be published. It’s currently as finished as I can get it without help from someone who knows more about editing than me.
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.