It’s been a while since I wrote anything about living with a chronic pain condition so it’s time for another update. What fun!
The thing about a variable condition like mine is that while the pain never truly goes away it can sometimes lull you into a false sense of security by being less horrible for a while. And then it comes back full force and you remember why your life sucks.
I’ve been having shoulder trouble for a few weeks because I had dared to enjoy myself by playing video games. I cut right back on that and stretched more and just put up with the pain which is how pain management actually works. It doesn’t solve the problem it just helps you to live with it. Which usually means living less.
That’s not the pain I’m writing about now. Though now I think about them my shoulders do feel like I’m wearing lead epaulettes and I wish they’d stop.
Today I woke up and rolled over in bed and I really wished I hadn’t because it feels like some psychopath filled my pelvis and lower spine with broken glass. Holy crap it hurt. It’s still hurting. It’s hurting a bit less because I’ve taken paracetamol (acetaminophen for American readers) and vaped some CBD (cannabidiol, and yes it is legal in the uk).
What I want to say is that if you know someone with chronic pain and you see them smiling and moving around and apparently fine that doesn’t mean that they’re not actively in pain right now. It just means that compared to how much pain they have been in it’s no biggie for them.
If you also have chronic pain and you’re wondering about the CBD here’s the details. It’s legal in the UK. In the US it’s more complicated. In theory it’s legal at the federal level as long as there’s no THC in it but local laws vary.
I get mine from CBD Life, which is a UK based company though they do ship to other countries. I can recommend their vape liquid and their customer service but I have no first hand experience of their other products. That is an affiliate link. If you buy stuff from them I’ll get money off my next order, because I do buy and use their stuff and I want to buy more.
And if you want to buy me a coffee, because coffee does help with pain management, you can do it through Ko-fi.
I have decided that the regular diet updates were as boring as hell. I don’t want to ditch them entirely but I want to change the focus. I think my overall health is more important than my weight. And I’m sick of this blog getting followed by diet and weight-loss blogs.
Some of you will be thinking ‘I bet that means she’s put on weight again’ but no. Actually I’ve lost half a kilo which is just over a pound so my total weight loss is now just over 15kg (33 pounds). I don’t know how. I’ve not been sticking to the strict eating plan and I’ve hardly been wearing my compression tights so I don’t think it’s all fluid. All I can say is that my body continues to be a mystery.
No news on the replacement compression hosiery. I hope they’re going to arrive soon but it’s possible that they’ve been doubly delayed by the weather. Either that or the manufacturer has lost the order again. Not much going on with exercise because of the fibromyalgia flare up that caused the horrible back spasms. My back pain might be easing off but it’s too early to be sure. It could just be lulling me into a false sense of security.
In mental health news I’m doing an excellent job of seeming ok but I’m having serious executive function problems so I know that something is not right. Or maybe it’s just the same thing that’s never been right and I’m just less tolerant of it than usual.
In creative news I’ve got some excellent ideas for the sequels to the completed novel that I was querying and to the novel I’m finishing off. Sequels are great in theory but if I don’t get those novels published then they’re just more wasted effort.
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.
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 (just over a pound).
Probably. It might have been more but I forgot to weigh myself first thing becuase I had to get up first thing and shout at the bank and then go out and get money and then eat something. Then come back home and weigh myself. Then move the scales because the corner was slightly cocked on the mat and it was claiming that I’d lost 3 kilos,
Also I’m menstruating* which might mess it up. So really this week’s weight should be a line of question marks.
Lessons from this week include that I can eat at Wagamama while keeping it low carb and that Costa’s new breakfast bars are low carb enough for me to eat as long as I’m careful for the rest of the day.
I’m trying to be more active but Goddammit it hurts. As I write this I have a muscle spasm in my right forearm that is constantly reminding me that my life sucks and it will never be easy. Typing with an arm spasm is no fun at all but if I expected life to be fun I probably should have been born in an entirely different body.
*Anyone who is shocked that I, an adult woman, have publicly mentioned the fact that my uterus is bleeding probably needs to back away from their device. You would not believe the stuff that’s on the internet.
Last update. Diet page.
After a very active weekend during which I had a couple of days where I ate less than half my allotted calories I have lost a whole 400g (just under a pound). And I’m in agony. And feeling like shit.
But at least I survived a 3 days of my Mum insisting that I should have a biscuit because they’re only small. She did make sure to tell me that she’s super proud of me for losing weight. It’s nice of her to say so but it doesn’t change the fact that the weight loss is meaningless.
Tomorrow (as I write this it’ll be yesterday by the time it posts) I have an appointment at the leg ulcer clinic. I don’t have a leg ulcer. I assume this is my Doctor trying to get me compression wraps. I predict that I will yet again be sent home with nothing but we shall see.
[Edit: I was not sent away with nothing. I got an actually useful referral. Yay!]
Last update. Diet Page
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.