Bullshit and bumfluff

So, yesterday was rheumatology, with not really Prof McG, but a doctor under him, who I’ll call Dr Blue.

 

We’ll start with the way that by the time I got there I was so violently car-sick I passed out in the waiting room. Shaking, freezing skin, grey lips, grey to the roots of my nails, eyes shut to stop the spinning, clutching a sick-hat like it was a rosary, whilst the two waiting nurses fussed and patted my arm and looked genuinely concerned. And as the carsickness wore off, the pain in my shoulder faded in.

 

After about a quarter of an hour of waiting, one of the nurses put me in a consultation room, on a bench, with pillows, and I drifted off into quiet overwhelming-pain land for a little bit.

 

After a while, Dr Blue arrived, and she was worried for me. Step one was a really good sign – Asked what was wrong with the shoulder (though didn’t seem to understand that “main problem” didn’t mean that the rest of me was fine), got me to take my shirt off, then got me to move my arms through a series of symmetrical movements to view the difference between the two, then the arm on its own to check for the pain (Determining that the pain was “all the time, other than when I was lying completely flat”) and then asking about when the pain started, and if there’d been any examinations since then.

 

When I said, “No, not deliberately, but I did get x-rays when I’d crashed my bike two months ago” she immediately got me back into my shirt, and moved into the next room, where she could access my records and bring up my images. Nice, clean, non-cracked bones, no calcific tendonitis. Very good chance that it was just a lot of soft tissue damage from constantly dislocating and relocating.

 

She said that, once again, I was doing everything right – Keeping the muscles warm, trying to move as much as I could, getting anyone I could persuade to massage it to massage it – She approved of my having decided to train myself as a physio, she approved of my using Maitland for basic manipulations, she approved of my using topical irritants – acupuncture needles, chili oil, self-harm – and she generally just approved of my attitude. She said, even without needing prompting, that hypermobility syndrome tended to frustrate medics, purely because it was so difficult to treat, needed such a multi-disciplinary approach, and would just relapse all on its own, even if you were doing everything right, sometimes.

 

She sent another letter to the GP’s practise to ask them what on earth had happened to my Stanmore referral. I still don’t really expect to ever hear about that again.

 

Then she asked about what medications I was on, and when I got to “diazepam” she got the pinchy-frowny face that doctors only get when they’re about to say something either wildly ignorant or wildly offensive.

 

“How much of that do you take?”

“Sixteen miligrams, a month.” I said, “Which is why most of the time I just have painful spasms that make my nails go blue.”

“Oh” she said “That’s good, it means you won’t get addicted. Nasty stuff.”

 

I decided not to bother protesting. No point in getting labelled as a drug-seeker, when I’ve been coping, just barely, with a lot of pain. At least I’ve been coping. But then I had to protest, because she decided to add;

 

“Have you tried any complementary therapies? Like aromatherapy, maybe.”

 

I think my facial expression could only be described as anatomically improbable and upsetting to small children.

 

I didn’t have the strength to complain. I just suddenly, immediately, wrote her off as an ignorant fool. It was probably a good thing that it was right at the end of the consultation, because up to that point she’d been perfectly reasonable and had mostly been talking sense, even if she did partake in the unforgivable delusion that addiction was drug-dependent.

 

I left, taking the prescription for capsaicin down to the pharmacy, and booking for my next three-month appointment with Dr D again, which will hopefully this time actually be with Dr D.

 

The vultures are in our hearts, waiting for the clarion call.

A couple of days ago, I was linked this video by someone who really wanted to help me learn how to treat Ehlers-Danlos Syndrome without taking any medication for it. I found him in the #MedicatedAndMighty hashtag on Twitter, where he was resolutely telling people that any benefit that they gained from psychiatric medication was “fake” and “switching off parts of their brains” and seemed very confused as to how neurobiology worked.

 

Although he hadn’t heard of Ehlers-Danlos until I told him about it (He was telling me that I really, really didn’t need opiates, really, at all) he very quickly became an expert through watching Youtube videos, and linked this one to me, to educate me better in just how wrong I was to be following a proven regimen agreed on between myself, a hypermobility specialist and a dedicated rheumatologist, borne out by several years of experience and decades of gradually-improving clinical guidelines backed by large-scale trials and even larger scale observations.

 

So, this video;

Here’s the key points of the video. The numbers are time-stamps, and the bulletpoints are a precis of what’s being said.

3.45 – Give up all forms of sugar to reduce inflammation. Give up fruit, bread and potatoes.
4.30 – …Apart from coconut sugar and honey, they’re good sugar.
5.27 – All diseases, including diabetes and cancer, are caused by inflammation
5.50 – Stop eating gluten! Gluten is inflammatory.
7.10 – Balance your body’s pH by eating raw fruit! Meat and dairy will make you acidic.
8.10 – Juice things! But you’re avoiding sugar, so don’t just juice fruit, juice carrots.
8.40 – Food is mentioned as being “Ayurvedically satisfying to your stomach”
9.40 – Claims that leaky gut (ususually permeable intestines) is due to “Rips and tears and holes in your stomach, causing food allergies”
11.00 – Talks about “raw” probiotics.
11.50 – Claims that Cod Liver Oil lubricates the body from the inside.
13.30 – “Buy herbs from Whole Foods because the staff are very knowledgeable about herbs.”
16.15 – Stay away from anything with Wi-Fi, it’ll inflame you, so always use your laptops plugged in.(This goes on, at length, encompassing phones, microwaves and TVs too)
18.45 – “Trust your gut, not your drug-pushing doctor”
19.15 – “Go to a naturopath, they’ll show you alternatives to all the medications that you’re on!”
20.15 – “Nutritional psychiatrist” giving out diet plans to “Build up your happy chemicals after so much surgery”
20.30 – What’s The Mood Cure by Julia Ross? Feels like this needs investigating.
22.00 – Acupuncture. For everything.
22.50 – Naturopaths, again, claiming that they’re trained in genuine medicine as well as woo.
23.45 – EFT, which is tapping on your “energy points” until your feelings come out. Hmm.
24.50 – “Avoid inflammatory foods” The same woo as the EDS society was pushing a while ago, hmm.
25.00 – “Nightshade foods are almost poisonous to our body” (At least they are all, broadly, really related to nightshade – Tomatoes, aubergines, etc)
25.50 – Avoid foods containing lycopene.
27.00 – “Turmeric cures cancer, but I won’t say cancer, I’ll say ‘Starts with C and ends in R’ because I know there’s a Cancer Act out there…
28.30 – “Processed food is the devil, our body wasn’t meant to process it.

And this just makes me really, really angry, that charlatans prey on the pain and horror that people with chronic conditions have, and trick them into believing this kind of bullshit soup. She has good points in there (Mostly “Stay active, if you can, gentle stretches and muscle building” and “Get therapy, if you can”) but they’re lost in the scattergun of not eating asparagus and keeping your mobile phone in a locked drawer.

 

I am scared that she’s wasting time on therapies which make her life arbitrarily more difficult, and ignoring ones which could make her life genuinely better or safer. VEDS is scary, it’s the monster under the stairs for everyone with an EDS-HM or EDS-Classic diagnosis. I understand the urge to just pull up the fluffy blanket and hide under it.

 

I know that many of the things that she’s talking about can be fun, or can give a sense of much-needed control in the face of a horrible illness. I know I do a lot of things which aren’t medically necessary, which I consider to palliate my symptoms, and some things which straddle the boundary between “medically necessary” and “personally soothing”, as well as things which are purely medicinal.

 

For example – On weeknights I swim, then I take my evening medication, then I lie in bed and read the next chapter of the Aubreyad in low-light whilst drinking grog. If I miss one of these events, I will feel worse. But let’s look more closely at them.

 

I swim: This is both physical therapy to build up muscle tone, and something which gives me an enjoyable sense of achievement.

 

I medicate: This is necessary in the management of EDS – Diclofenac to reduce inflammation, Lansoprazole to protect my gut, Diazepam to prevent spasms (when needed) and morphine to prevent pain and poor-quality sleep.

 

I read: This is something which is for enjoyment, and it gives me something to concentrate on other than my symptoms as I begin to fall asleep.

 

My methods here aren’t universals (I imagine that pilates or jogging or rugby would work as exercise, a different cocktail of medications would suit, and reading could be replaced with good food or sex or TV as a relaxing end-of-day ritual), and everyone will have to find their own balance, which may also change over time.

 

But, and here’s my point, more than eight hundred words into the post – People should recognise what is medicine and what is just soothing.

 

I adore my TENS machine. It is zappy and fizzy and feels nice on sore muscles (Et sur la moule, ehehehehehe). It is not medicine, it is just nice.

 

I hate feeling flattened by diazepam. It feels like being stuck under a foot of snow, in a fog bank. It is still medicine, since it stops the dangerous spasms that make my condition worse.

 

I really dislike courgettes, they taste like sewerage. They are not medicine, so I do not eat them.

 

I love having codeine skin. It’s a side-effect of taking morphine, which I take for pain relief. Morphine is medicine.

 

This is another reason why I’m such a firm advocate of the NHS remaining as a free-at-the-point-of-use service; It’s easier to crack on with a course of treatment that’s taking a while for you to feel the effects (Physio, NSAIDs, most talking cures, basically all antidepressants) when you’re not paying out-of-pocket for every week where “nothing happened” – That is to say, loading-in periods, stabilising periods, and even just the time it takes to work out appropriate dosages. It applies to treatments that don’t work as well – After the fourth course of drugs that just turn your spit green and make you want to eat a lot of mustard, it’s easier to feel inclined to try the fifth if you’ve not had to pay for all of them, and aren’t increasingly feeling like medicine is just emptying your wallet along with wasting your time.

 

That’s the big problem with alternative “medicine” – It almost always gives instant “results”. They’re not real, measurable improvments in your condition, of course, but they’re changes that you spot. You have to think before you eat, so any tiny change in your symptoms gets attributed to the food, and magnified along with it, because you expect a change to happen. You feel better immediately after the acupuncture, or acupressure, or gentle tapping, because you’ve spent an hour in a warm, comfortable studio being touched and listened to.  Direct human attention is a powerful drug. As a friend once pointed out to me, even in a non-sexual context, a bit of faffy gentle twiddly massage from your partner can feel nicer than a really competent one from a physio, because it’s just nice to have that sense of intimacy and care.

 

And alt-med practitioners really cultivate that atmosphere of intimacy; Without it, they’d have no business, because other than the placebo “It feels nice!” their art does nothing, and without that sense of “Oh, but my acupuncturist is so sweet and kind, they’re like a friend!” you’d be a thousand times more likely to realise that they’re just selling snake oil, never go back, and tell your friends not to waste their money there either.

 

So that’s why alt med and naturopathy aren’t just harmless fun. They’re deliberately selling “relaxing” as “medication” and that’s unethical.

My Brain On Drugs

I’ve written more than a few times about the long-term use of drugs, and pain, and family and friends’ attitudes to medication and the shame that always seems to come with being dependent, and Bruce Alexander’s Rat Park Experiments, as compared to how GPs seem to think about addiction, and even about overdose, but I’ve recently realised that most of these are buried at the bottom of posts about my own situation, rather than standing on their own.

So here’s some kind of masterpost of my thoughts on drugs. I might have directed you to this because you asked a flamingly obvious question, or because you were generically ignorant, or because you were spreading hateful misinformation. Please, read on and be enlightened.

 

GPs and medication

For some reason, some GPs seem to think that they are are be-all and end-all of medical knowledge. Even when a consultant, or a surgeon, or a physiotherapist, or a headpoker has told them otherwise, they will always insist on sticking their neb in and fiddling with a patient’s prescriptions. They pad their ignorance of the case-in-hand by talking about side effects, the dangers of addiction, and just “not being comfortable…” with particular courses of action. Even though, usually, all of these things have been talked through between the patient and the specialist, and the prescription suggested is the one with the best chance of causing the most improvement with the least unacceptable side-effects. If they are somehow persuaded to just issue the prescription, they’ll try to reduce the dose, or reduce the number of tablets given, or insist on reviewing it themselves every month, in spite of having no useful input since they never take useful notes on the patient and never trust what the patient is telling them about their condition.

 

Addiction

Addiction is pretty much always presented as a) likely and b) the worst possible thing that can happen to a long-term opiate or benzodiazepene user. The truth is that it’s been pretty conclusively proven, in multiple studies, that substance-mediated addiction doesn’t really exist. So a patient taking morphine for pain, even for years and years on end, won’t become addicted. They might become tolerant, and need a higher dose to achieve the same effect, and they might suffer physical withdrawal effects when they initially stop taking it, but they will not become addicts.

I maintain that addiction is still only a problem if it puts the user in danger. If the drug supply comes from a reputable source, and the dosage is kept low enough to not cause physiological problems, and the user’s normal functioning isn’t impaired, who cares if they motivate themselves to go to work in the mornings with the knowledge that they can get high when they get home?

 

Tolerance

It’s a popular myth – That someone starting out on a small dose of opiate painkillers will have to take larger and larger doses over time to get the same effect. It’s just, fortunately, not true. There’ll often be a large increase in the first year, whilst the doctor and patient work out together what the right dose is for the patient to get all of their symptoms under control, and indeed what the right type of pain relief is (Lots of PRN? Slow release? Patches? Combinations? Multiple families of drugs or just one? How do they conform to their routine, do they need something simple to remember, or can they handle a dozen things with a dozen different dosing parameters?) but developing such a tolerance that a drug just won’t work is rare.

 

Balance

It’s sometimes hard to work out what’s a detrimental side-effect of a condition, and what’s a detrimental side-effect of medication. It’s personal to the person with the condition, especially in what someone will tolerate – Some people would rather feel slightly queasy all the time because of a drug that disagrees with them, whereas others would rather put up with the original condition. The most famous of these dilemmas is probably with SSRIs, when used to treat “simple” depression – Some people prefer to deal with the depression on their own or with talking therapies alone, rather than to have their sex drive and performance ruined by SSRIs, which is one of the more common side-effects. And the same applies to painkillers, and even with PRN painkillers, from dose to dose; On Monday, Jim might prefer to be in more pain, but more clear-headed, whereas on Saturday he might give himself a “day off” and take enough to no longer be in pain, even if it’s enough to make him floppy all over and to want to tell his friends about a lovely imaginary cow called Grenache.

 

The Fabled Morphine High

It goes away. Someone on slow-release morphine won’t really be “always a little bit stoned”, they’ll just not be in pain. For the first week or two, they might feel a bit weird, but that’ll probably be the all of it. Someone taking their prescribed dose of PRN morphine, after a few times, won’t feel a high from it, they’ll again just suddenly be in less pain. Occasionally, the appropriate amount of morphine for a situation will still get you high, even after years of use. It’s not unpleasant, it’s no more dangerous than the amount of pain that it’s masking, and frankly it’s often difficult to untangle it from the pain-relieving effect. Various opiates and opioids have different effects – Some are extremely soporific, some are extremely efficient at only effecting the nociceptors, some have a gentle antianxiolytic effect, some just make the pain feel less urgent, as if the mind is floating away from the body. They’re all components of how they relieve pain.

 

Willpower

There’s no grand moral imperative to not take drugs. That’s not a natural law, it’s some kind of conservative anxiety about other people getting an easy ride, or a puritan anxiety that people might be enjoying themselves, or possibly an anti-technological anxiety that drugs are science and science is bad. Sometimes, it’s a bigger act of willpower to say “No, I’m going to stop doing the [fun or necessary thing] and lie down and take my medication and rest instead. Even though I don’t want to,” than to try to continue as is nothing was wrong. Society hammers into us from an early age that we have responsibilities which must be discharged before we can rest, and some of those make sense – You have to get the bairns home from school, or turn off the open gas flame on the hob, because those are things which will be unsafe if not attended to – but some of them are not sensible; There is no reason why you must vacuum the living room carpet or go out to a dinner party if you’re exhausted and in pain and just want to lie down. They’re not as fundamental on Maslow’s Hierarchy as not being in pain. And for that matter, there is nothing wrong with delegating. Sometimes it’s fine to say “No, you can make the tea, I need to take a load of pills and lie down in a dark corner for a while.”

 

Other People

It is not up to anyone but you how you take your medication. Anyone saying “Just take less of it! I hate it when you’re on morphine!” is saying “I prefer it when you’re in pain, because you’re more useful to me like that!” Work out what it is that they want – Whether that be housework, a share of your wages, sexual performance, more attention or any of the other billion things that one human can want from another – and make it abundantly clear to them that, without your painkillers, you won’t be able to give them more of what they want, you’ll just be disappointing them whilst in pain, rather than disappointing them whilst in relative comfort.

 

Bodily Harm

Being in pain, long term, causes damage. Pain causes spasms, which can rip muscles out of insertions and snap bones (An orthopaedic surgeon once memorably told me about a muscle spasm snapping someone’s femur. It may have been a diseased femur, but it was a femur. Think how thick a femur is.) even before you come down to the way that a muscle spasm will make you drop whatever you’re holding, make your paintbrush wobble across the page, or make you slam the throttle of your bike so hard that you fly forwards at a hundred miles an hour. Pain causes hypertension and an increased heart rate, which can lead to heart attacks and all sorts of other things. Pain causes lack of appetite, resulting in long-term weight loss and often tooth decay from never chewing, so never producing sufficient saliva. Pain causes anxiety and depression and frankly can just make you into a horrible person to be around. This is not to mention the number of people who kill themselves every year due to being in untreated, long-term pain.

Long-term opiate use is safe and effective. The constipation is treatable, easily and safely. The chance of liver or kidney trouble, if taken within prescribed amounts, is infinitessimally small and can be tested for long before it becomes a problem, if there are any warning signs.

 

This post will get longer over time. Thank you for reading.

Funded By The British Taxpayer

So, as of 2016, all medication prescribed by the NHS and costing more than £20 is going to have the price listed on the packet, along with the message “Paid for by the British Taxpayer”.

The Tories claim this is to “hammer home to patients that these drugs aren’t ‘free’, and that wasting them costs the Taxpayer money”.

Right then.

It takes a good eye to not view this as “Tories trying to guilt-trip the disabled into taking less medication”.

First, let us look at “Funded by the British Taxpayer”. This does two things – It posits that anyone taking a prescription is not a taxpayer and subtly, somehow, not British. After all, it’s not British to just take something for free, we’re a nation of hardworking families. Definitely not inclusive of disabled people, who are both more likely to not work and more likely to be single or childless than an abled person.

I find myself fighting the urge to remind readers, and more so myself, that I am a taxpayer, I am self-employed even if I’m currently on self-appointed sick leave, I live with my partner in a close approximation of a family. No matter how much I tell myself that my worth is not my monetary value, or my conformation to strict standards of how a successful person looks (House, car, job), but is based in my strength of character and the love of my friends… I’m still subject to the same propoganda as everyone else. I am a taxpayer, a worker, and thus I have rights. Being a taxpayer gives me rights. I chuck my comrades who can’t and have never worked to the wolves.

Asides aside.

They write “THIS PROLE IS COSTING THE TAXPAYER MONEY” on the bags that we must carry home from the pharmacy. Passers-by scrutinise us; Do they need whatever’s in that bag? They’re just going to go home and waste it. Or maybe they’re an addict, and that’s their fix, getting high on prescription drugs. Are they really ill? I saw them on crutches last week, a wheelchair the month before, but they stood up and walke around a bit. They’re faking, I know it. Sick bastards, draining Us Hard Workers’ taxes, giving nothing back. Bet they’re on benefits. Bet I can dob them in to the DWP for not being as sick as they claim. I can diagnose complex illnesses by watching someone walk twenty yards.

Those people, they’re just a drain on society, they give nothing back. We shouldn’t be so lenient towards them. Let them live in hospitals or asylums or prisons, it’ll be cheaper. Feed them, clothe them, but none of this luxury money to buy chocolate biscuits or internet access. That’ll teach them to skive off work. To have the temerity to be ill.

…It’s not far from that to denying us care altogether. Spend the money on people who will get better. Is it worth £20 or £40 or £80 to keep a cripple happy for a month, when it could be used to make a Hardworking Family better off?

I am compelled at this point to remind gentle readers that my taxes pay for their children to go to school. I have no children, I never will, but I don’t want signs on school gates saying “THIS COSTS THE TAXPAYER MONEY”. I’m not going to bang on at length about truancy rates and exam failures in the paper. I’m not going to try to whip up the population to worry about whether everyone who’s getting an education is really using it wisely and whether maybe some of those people should stop wasting educations and maybe get to sweeping chimneys instead.

So, one small sentence and we’re outside of society.

Then it gets worse;

Worthlessness is a fairly common feeling amongst the chronically ill, especially those of us with either mental illnesses, invisible illnesses in general, or what ued to be thought of as “Malingerer’s diseases” – Things which cause the kind of symptoms which aren’t visible to observers but rely entirely on self-reporting (Get me started about honest self-reporting of symptoms one day, if you ever want to be bored to tears). Fatigue, pain, confusion, muscle weakness, agoraphobia, psychosis. The day where you have one of those symptoms, and don’t at least briefly wonder “Am I just being lazy and melodramatic?” is a rare one.

Imagine that there was no way to buy food on the open market (as is the case with many prescription drugs, which are either controlled or downright illegal to posess otherwise). There is an agency which gives you food, which you need to live. There is no way to pay this agency (At the point of use, that is. You pay for the Food Distribution Service through your taxes, along with things like roads and schools and the fire service) and there is no way to stop being hungry. Every time they give you food, they begin to remind you how much the food costs, that someone had to make that food, that the money used to buy you food could have been used to look after innocent babies or to improve the lives of people who are just on every level more worthy than you. How long do you think that you could manage before you started trying to live on nothing but tea and dry bread? Or only eating once a week, and spending the other six days lying very still so as not to take money away from innocent babies?

But of course, this is all a lie. The money saved by having more people fail to collect their prescriptions, to decide to go unmedicated – To actively decide to live in pain in order to be less of a burden to society, Mr Hunt, this is what you are asking of us – Will not go to look after innocent babies, or even to fund the NHS better. Mr Hunt and his cronies will look at how much money the NHS is “saving”, and will slash its budget. Then Mr Smith will look at how the number of people on repeat prescriptions has reduced, and will tell the department of work and pensions that the sick are being cured, and that thus less of the sick should claim benefits – After all, if the sick can cope without medication, they can’t be that sick, can they? They must have been swinging the lead when they said they were sick, what a bunch of scroungers, trying to cheat the Hardworking Families out of their hard-earned money.

Grist for the mill.

Statistics and damned lies.

So, today I saw Dr L about my medication review.

I explained what had happened (That every time I spoke to Dr Rh, he tried to take my pain relief away), and said, being bluntly honest for once; “If he thinks it’s physically damaging me, he can do a liver function test. If he thinks I’m an addict, he can come out and say it to my face. I’m not annoyed that he wanted to review my medications, though I am annoyed that he thinks that he can unilaterally decide what’s best for me without speaking to either me or my consultant, I’m mostly just annoyed that he went behind my back and changed my medication, even after three other GPs and two consultants have said it was appropriate.”

Dr L seemed shocked that I wasn’t going to pussyfoot around anymore, and started with the mealy-mouthed objections;

“Well, it puts us in a very difficult position…”

“We just want to do what’s in your best interest, and being on morphine really isn’t in your best interest…”

“We’re concerned with taking the safest course of action…”

All shot down with my usual replies. Prove that it’s doing me more harm than being in constant pain would do.  Tell me why being in pain is a better course of action than not being in pain. If it’s safety that you’re worried about, why don’t you gatekeep the famously-bad-for-the-stomach-and-liver NSAIDs as much as you do the much-less-likely-to-cause-invisible-harm opiates and benzodiazepines.

Then she came up with the blatant lie; “It says here that last month you discussed possibly reducing your MST”.

No, no I didn’t. I told the last doctor about how I took my MST – In that I didn’t take anywhere near the full dose per month, in that I took a full dose at night if I wanted to sleep for the full eight hours, and that I took a full dose in the morning if I wanted to do anything more energetic than lie in bed – And that seemed to mollify her that I was appropriately suffering (After all, if I took all my medication all the time, and slept soundly and felt fantastic when I was awake, I’d be an addict). We’d not discussed reducing my dose at all, and yet there it was in my notes. The notes which notably didn’t contain any of the information that I’d been asked about at the last session.

Dr L didn’t write down anything about my actual rates of consumption either. So I assume that I’m going to get the same “Ooh but opiates are fun things for naughty boys, not lifesaving medicine for good ones” rhetoric again the next time.

She did however swap my Sumatriptan for a Zolmatriptan nasal spray, which will hopefully work to stop the migraines but without the painful heart palpitations and chest tightness and blurry vision and inability to sit upright or breathe. So that’s a start.

I am still far, far too tired for this battle. Today, I’m going to ring Dr D, the consultant rheum, to see if I can get an appointment with him and get my Stanmore referral. This feels like it should be work for someone who isn’t incredibly ill.

And it had been going so well

So, my medication arrived on Friday, sans-morphine, and because of the pointlessness of bank holidays I couldn’t get any more until today (Tuesday).

My morphine arrived. Or rather, half of my morphine arrived.

I rang the pharmacy, and was told that, no, sixty pills was all I was getting from now on. So I rang the GP.

First, there were “no doctors in”. Seriously, mid-afternoon on a Tuesday, there were no doctors in the practice which employs more than a dozen clinicians.

I first said to the receptionist that this was exactly the kind of clinical decision that the patient should be involved in, since it meant having to change the actual dosage regime. Her response was “Oh, but the strength hasn’t been changed, so it’s a clerical decision, not a clinical one, so you just don’t get as many tablets. You don’t get to query those.”

Let me put this another way; Every month you eat five tins of beans, ten loaves of bread and a packet of margarine. You have no other food, and you carefully balance the amount of each that you have so that every day you can have beans on toast. One day, you go to the bakery, and they tell you that you can now only have five loaves of bread. Suddenly, the beans don’t work as well (They’re a bit icky when you’re eating them cold out of the tin, and you feel distinctly unwell doing so), the margarine is useless (you’re having to eat whole lumps of it, because there’s no bread to spread it on) and, worst of all, you’re hungry all the time. In fact, gradually, you’re starving, because you literally aren’t getting enough food to maintain yourself.

Halving someone’s rations is exactly the sort of thing that you should consult with them over.

I’ve managed to argue a meeting next week to “review my medication”, despite the fact that I literally reviewed them last month, but this is getting beyond a joke. It will surprise nobody that it was precipitated by Dr Rh, the same puritanical hatemonger who tried to reduce my morphine twice over the past two months. Thankfully, the review (booked for the 3rd) is with Dr L, who is very sympathetic and will just nod and agree that, yes, the review that was done last month was sufficient.

There is literally no reason for doing this other than a basic hatred or suspicion of people who are in constant pain. When I’ve already been looked at, multiple times, by multiple doctors, and been told “Well, you seem to be managing your condition extremely well, and the medication that you’re taking seems to be working as well as can be hoped, and look at all the progress that you’re making” the only reasons to try to change my regimen is if you think that you can make it more effective (“So, you do really well on diclofenac, you might like some other NSAIDs, would you like to try one for a month?”) or more streamlined (“So, you take four of these three times a day, would you like to try taking six of them twice a day, or how about a patch that releases the equivalent of twelve over 24 hours?”) Not just “I didn’t like that you were taking BAD DRUGS so I thought I’d take you off the BAD DRUGS – that means you won’t have EDS anymore, right? That’s how it works?”

Fuck the society that makes us more worried that someone who doesn’t need opiates might have them, than that someone who does need them doesn’t have them.

Warning signs

Reading the great list of papers linked by CSL yesterday, I found that there was only one consequence of long-term opiate use which was both true to me and insoluble.

“Feeling reliant on the medical profession to relieve pain, and as if the only way to relieve pain is pharmacological.”

So, I thought I’d approach that.

The paper suggests lifestyle changes, exercise, activity pacing and (bizarrely) the use of a TENS machine. It’ of course, doesn’t account for the fact that most long-term pain patients are actually very good at pacing, exercising when they can, using any non-medical remedies that they can, and generally trying anything – ANYTHING – that seems plausible to get them out of pain.

So, next time you have a sprained ankle, I want you to not take any pain relief for it – Not even an ibuprofen. Instead, I want you to go for a thirty mile walk. Maybe consider eating a salad, since “Lifestyle changes” is always code for “Lose weight”. Did it work? Would it have been easier to go for the thirty mile walk with a painkiller as well, so that you could concentrate on walking, rather than protecting the sore ankle in a way that would probably do long-term damage? Thought so.

Part of the problem is the definition of chronic pain. Some sources say “Any pain which has persisted for three months or more and has a debilitating effect”, and some say “Any pain which has persisted beyond the physical healing time of the tissue”. If you’re being treated by a doctor who uses the former definition, you will get all the morphine that you need, a tonne of physio, and generally buckets of sympathy. If you’re being treated by a doctor that uses the latter definition, they’ll assume that the pain is neuropathic, try to give you pregabalin, and assume that you’re insane and easily frightened.

My actual on-paper diagnosis is “Chronic pain on a background of joint hypermobility”. Some doctors read this as “Ehlers Danlos Syndrome, beware, fragile”. Other doctors read it as “Is insane and obsessed with being in pain, has slightly unusual joints which back up the delusion”.

Possibly fortunately, possibly unfortunately, my medical record is also full of instances of me presenting to doctors with dislocated hips, wrists, clavicles, shoulders and small joints, and MRIs showing my unstable spine with its herniated discs and trapped nerves. It shouldn’t be difficult to make it obvious that I have constant pain in most of my joints because I have constant injuries in most of my joints – I’ve not had a dislocated shoulder that’s hurt for three years, I’ve had a few hundred dislocated shoulders, and the pain and healing times have overlapped significantly. Thus, I take morphine and diclofenac every day, to keep the pain of the constant-healing-constant-breaking under control. I also take morphine and diazepam PRN for the worst fresh injuries. Just like anyone else would, if they had pain which was so severe that over the counter painkillers didn’t even touch it.

Just a rant. I’m not having a fantastic mental health day – Part of me is very prepared to walk into the river if my treatment is stopped on Monday, since that will be a more permanent solution than arguing with doctors again – so I’m getting it off my chest.

And, yes, I am reliant on the medical profession to relieve my pain. Because even with a sensible amount of exercise, a sensible amount of “just living with it”, a sensible amount of pacing my activities and a sensible amount of unconventional remedies, I still have episodes of pain, closely tied to fresh injuries, which need pain relief. Just like everyone else.

Creepy Green Light/We Will Bury You.

I am feeling juggernauty today. I am going to crush people under my hooves and hang their skins from my antlers as a warning to the rest. In the words of someone who was wrong, but had a way with words – “Нравится вам или нет, но история на нашей стороне. Мы вас похороним“.

So, I had my appointment with Dr Rpm yesterday via phone since I wasn’t walking well enough to get to the surgery.

I said that I’d taken the Imigran, twice, and that it did seem to work, sort of, or at least worked well enough to be better than having a full-blown migraine. I asked if it could be taken regularly, safely, and he said it could be. So he added it to me repeat script.

And then, “Oh,” he said “What else are you taking?”

I started listing “Diclofenac-”

“What’s that for?”

“For hypermobility syndrome.”

“Hmm. Go on -”

“Morphine sulphate-”

“The MST tablets? What’s that for?”

“For hypermobility, again”

A sharp intake of breath.

“How long have you been on them?”

“About a year, maybe a year and a half?”

A sad sigh “Oh, we’ll have to bring you in to get you weaned off them, then”

I feel my heart rate go up.

“What for?”

“Oh, they’re just not good to be on forever, opiates, we’ll see about weaning you off”

“But without them, I’ll be in pain.”

“You have to book an appointment so we can taped you down and get you off them.”

“But-”

“Book in. You have to come off, it’s not good for you. You’re in on the 20th anyway, we’ll start then.”

Appointment over. My hands shaking, I sleep for an hour to get my racing anxiety back under control.

Upon waking, I was myself again, fury and reason;

1) I’m using them as directed by my consultant rheumatologist, a plan that was also signed off by the national hypermobility clinic in London. If anyone is going to change my medication that radically, it’s going to be the specialists, so book me an appointment.

2) I’ve not had any adverse effects that I can’t deal with. If you think that damage is being done internally, get me a liver function test. If that shows any damage, then we can talk about “weaning me off”.

3) If you take me off morphine, you’ll have to find another painkiller which does the same job. Long term. Safely. Not a GABA-analogue or amytriptalin, since I get horrific side effects with the latter and the former aren’t licensed for painkiller use in the UK and also have no evidence base for use in the treatment of recurrent acute musculoskeletal pain.

4) Clinical guidelines for both EDS-HM and multiple herniated discs are to prescribe pain relief. First line is an NSAID, then the opiates until one is found that works. Morphine works really, really well. Morphine keeps me out of hospital.

5) If you take away my morphine, I will turn up in hospital every couple of days needing someone to reset my dislocations like you would on a fibrotypical person; Putting me under and booking a surgical team. This will be expensive and waste time which could be used treating people who really need treatment. I will also scream the hospital to a standstill in the process. I have an eight litre lung capacity from a decade of competitive swimming, and am a decently well-trained contralto. I can deliver you four octaves of regret at having me in your department.

6) I can also use all of that shouty energy to deliver an impassioned speech to NICE and get you struck off for letting your personal morality override clinical guidelines, you abstemious shitweasel.

7) You’re going to have to do better than “Boo hoo bad for yoo” – Show me studies, relevant ones, about patients in my position, about doses similar to what I’m taking, about comparative harm of a life on opiates and a (clue: much, much shorter) life in unimaginable pain.

8) You’re going to have to explain your reasoning not only to me, but also to rheumatology, the national hypermobility unit, the pain clinic that I still have an open referral to, the pain psychologist who said that taking my morphine away would be tantamount to killing me, the local hospital trust who will be deeply unimpressed with your attempt to increase unnecessary A+E admissions, Stanmore – who are relying on me being pain-free and in perfect physical condition so they can work their magic, my new physiotherapist who would rather work on someone motivated and cooperative than in pain and immobile, and to my friends and my partner to whom you’ve just given a full-time caring responsibility, since sans-morphine I will be unable to function well enough to feed, clothe or wash myself.

9) And this is me we’re talking about. You’re going to have to expect to see me every morning, at the surgery, at 8am, probably with a deckchair and a book so that I can wait all day, until you reinstate my appropriate medication.

If all of that sounds good to you, feel free. I’ll see you on the twentieth.

Prescriptions

For whatever reason, a load of the stuff on my repeat prescription has been taken off. And even though they’ve had literally two weeks to arrange it since I starte hassling them, my prescription hasn’t come in on time, again – My prescription NEVER comes in on time. I always ring up, and the pharmacy says “It’ll be ready on Thursday” and then I ring up on Thursday and they say “We sent it off today” and then promise to deliver it when it comes back, and then a week later I phone up again to say “Where’s my prescription?” and they say “Oh, it’s not come back yet, we’ll have to chase up the surgery…”

Basically, it seems that there’s a massive cock somewhere between the surgery and the pharmacy (Which are only a hundred yards apart) and that there’s no way to set up my repeat prescription to do what it says on the tin – To whit; Every month, when it’s due to run out, a van containing all of my drugs turns up at the house, and then I have my drugs.

So, I’m off to London in a couple of hours, and I’m going with basically no diazepam. Considering that I’m going to be in a very stressful situation, have to do a lot of sitting upright and walking, and will be spending four hours in the car, I can see this being an issue.

On the other hand, I’m sitting in the living room at my best friend’s house, there’s bright sunlight streaming in, my gladstone bag is packed, I’ve had a good breakfast and it looks like a lovely day to travel. See you in London.

A dance with the devil

I don’t know a single zebra who hasn’t at some point been told something like “I hate it when you take your painkillers”, by someone that they love and value. Best friend, partner, family member; The kind of person whose opinion matters, and where you might want to do anything to make them think better of you.

“I hate it when you take your painkillers”

Let me count the ways that that sentence is fucked up.

“I hate it when you take your painkillers” translates pretty neatly to “I prefer it when you’re in pain”. Regardless of if they’re trying to say “I prefer it when you’re in pain to when you’re socially inappropriate” or “I prefer it when you’re in pain to when you’re sleepy” or “I prefer it when you’re in pain to when you need someone else to drive and cook for you.” it, at its heart, is “I prefer it when you’re in pain.”

The most insidious justification of it that I’ve heard has always involved children, or pets (Disclaimer; I don’t have children, but I do have a dog) and it’s generally put as “But you can’t look after Isertana/Fido when you’re on painkillers!” It’s then followed up with “You’re irresponsible” or “You’re a bad Mum/Dad/dog owner for taking drugs in front of your child/pet”. And at this point, people tend to look smug – It’s a big social win, after all. Who wants a drug user, no, better than that; Who wants an opiate addict in a position where they’re responsible for the welfare of another living creature?

The picture paints itself; Mum laid on the sofa, surrounded by empty pill packets and half-demolished takeaway cartons, whilst toddler Isertana sits in their underwear, eating stale bread and margarine. Bloke staring at the television, numb, whilst Fido pisses on the carpet for the nineteenth time, thin and flea-ridden. Hogarth would weep with joy.

But let’s look at this in a much more realistic way. Here’s our two people, minus their pain relief;

Mum sits on the sofa, wracked with pain. Little Isertana watches her curling up and screaming over and over again, and wonders why she can’t help her poor Mum. Mum, for her part, is trying everything that she can to stop the pain – Yoga, acupuncture, better food. All of those cost money, and take time. Isertana’s clarinet lessons have to go first – They’re expensive and they clash with Mum’s reiki. Dinner becomes a massive trial, as the whole family switches to macro-probiotic-super-green-organic-gluten-free, and Izzie wonders why she’s being punished with horrible food. In addition to this, Mum snaps and shouts at her over the tiniest things, because she’s in so much pain.

Dog-owner Bloke lies in bed all day, unable to take his dog for a walk. He can’t even get downstairs to put food in the bowl, since every time he tries his knees explode with pain. He gets more short-tempered and stops talking to Dog, other than to tell it to get down off the furniture and to shout at it until it stops crying for food and attention. Dog pisses on the floor anyway, as Bloke can’t get to the door to let it out.

Now, let’s give them back their painkillers;

Mum sits on the sofa whilst Isertana plays, and they chat and play games. Sometimes, Izzie goes and brings her Mum a cup of orange juice, because she likes to help, and her Mum thanks her for it. When Mum is in pain, she takes her medicine, and goes a bit sleepy and easily distracted, but she still likes to sit with Isertana and they watch cartoons together. Sometimes they work together and cook cakes and make big meals, even if mostly they just eat instant, but once a week they order in a Chinese takeaway and it’s a real treat. Both are happier.

Bloke takes his painkillers, and at least makes it downstairs to feed Dog and let him out into the garden. He’s also in a better mood due to not being in pain, so although his dog doesn’t get as many walks as it could, it gets plenty of affection. Since he’s not distracted by the pain, he books a dog walker for a few days a week to make sure that Dog gets exercise. Both are happier.

So, why do people keep saying “I hate it when you take your painkillers”?

My theory is because they can’t imagine the alternative. They assume that (zebra)-(pain relief)=(functional person). Rather than (zebra)-(pain relief)=(person in incredible pain).

They see their partner and think that without the morphine their partner would be more lively, more focused, more of a “responsible adult”. They don’t realise that, usually, without the morphine, their partner would be just as lethargic and scatterbrained, only instead of being just lethargic and scatterbrained, they’d be lethargic and scatterbrained and suffering tremendously.

This is a difficult notion to get into people’s skulls, for a couple of reasons;

1) Society tends to parse “Very stoned” as being a desirable state to be in. Thus, partners will often assume that you just want to be stoned rather than sober.

– This one is difficult. There’s no denying that the feeling of being on morphine can be pleasant; In the right circumstances it’s soothing and restful, it comes with a tremendous sense of peace and affection to those around you, and ‘codeine skin’ (that feeling of having incredibly sensitive, velvety, tingly skin all over) is distractingly lovely.

Note, however, that I say “In the right circumstances”. As an alternative to being in horrific pain it is nearly always desirable. At the end of a long day, when all you have to do is lie around with good company and gently drift off to sleep whilst having inane conversations, it’s pleasant.

In the wrong circumstances (like at work, or on the bus, or at the shops), it’s horrible. That sense of tremendous emotional connectedness translates into painful, terrifying vulnerability. The peace and relaxation becomes exhaustion and grogginess and confusion. The all-over tingling becomes itching and irritation with every buckle, zip and strap.

I’ve said before that it’s like being drunk – Imagine if every morning you were forced to neck half a bottle of vodka, and then sent out into the world. You’d quickly stop feeling as if being drunk was in any way a desireable thing.

2) Society at-large is very suspicious of opiate use, and we have no cultural way of drawing the distinction between “drug dependent” and “drug addict”.

– In the absence of pain, I wouldn’t take opiates. I don’t think I’ve ever taken them other than to either dull pain that I was feeling, or in anticipation of pain that was about to happen. This, of course, means that I take between 20 and 120mg a day, every day.

To the layman, someone who takes 120mg of laudanum a day is an addict. We don’t really have a word for “Person with chronic pain who requires regular pain relief”. It’s similar, almost, to the attitude that some people take to antidepressants – That anyone who is taking them is somehow weak, or an addict, or otherwise morally dubious. It’s still bollocks. Nobody (or not many people) take that kind of attitude to people on long-term statins, or insulin, or antiretrovirals.

Thus, to many people, watching their best friend or their partner turn into the morphine queen feels like watching their partner turn into a drug addict, society’s second most hated bogeyman (after paedophiles). And thus they want their partner to stop taking the evil bad drugs.

3) Many people see looking after yourself, and putting your own needs first, regardless of what they are, as selfish.

– They are generally hypocritical in this. I have found that most people who say “I hate it when you take painkillers” hate it because they want you to be able to do something for them, whether that thing is look after another person, clean the house, go to work, perform sexually, or listen more carefully to whatever they’re saying. My only counter to this is to point out that, in the absence of the painkillers, you’re not going to be better, you’re just going to be in more pain.

And finally

4) People who don’t suffer from long-term pain don’t viscerally know what it’s like.

– When they say “Oh, don’t take your painkillers”, they imagine that it’s like having a headache, or a twisted ankle, or a gravel burn. They imagine that it’s like the kind of pain where, if you just leave it for a minute, it’ll go away. They possibly imagine that it’s like having pulled a muscle or cricked your neck – that it’s bad, but that you can work around it.

It’s not. When you’ve been in pain all the time, you’re already at “I’m working around it” levels of function. The pain that means that you neeed to take more pain relief on top of that is called “breakthrough pain” and it is exactly what it sounds like – It’s a pain that’s so bad that it shatters through any pain relief that you’re already on like a bull ripping through a paper bag. Suddenly, there is all the pain, and you’re feeling it all at once, and it can be anything from “Completely ruins your concentration” to “Curled up, screaming, begging for death”.

I volunteer a solution – Anyone who says “I hate it when you take your painkillers” has to promise to swear off pain relief entirely. And then has to wear shoes full of broken glass for a year. And then they might get the idea.

Short of actually hurting your partner/friend then refusing to give them pain relief, though, how do you get them to understand?

Well, it probably all depends on the person. Someone who dislikes it when you take painkillers because they’re frightened that you’ll become an addict will need a very different tactic to someone who dislikes it when you take painkillers because they find it embarrassing when you’re confused in public.

The common steps I’ve found are basically as follows;

1) Remind them that your painkiller use isn’t about them. It’s your experience, your pain, your choice of which is the lesser of two evils. If they push, find out what it is about your painkiller use bothers them, and gently remind them that without them, you won’t be “better”, you won’t be more attentive or more responsible, you’ll just be in pain.

2) Remind them of the clinical guidelines for the use of whatever painkiller you’re on. If you can demonstrate that what you’re taking is safe, that might help.

3) Point them at the Rat Park experiments. I know I bang on about them far too much but they’re just that important.

4) Involve them in some kind of ritual around your painkiller use sometimes. Not every time, obviously, but a compromise like “When I’ve taken my morphine and can’t have a real conversation, we can settle in with popcorn and watch those trashy old films you like”. Demonstrating over and over the difference betwen a morphine night (Relaxed, quiet, low-energy) and a pain-but-no-relief night (Crying, tension, possibility of a hospital visit, conversation always centred on pain) is a good way to get someone that you’re close to to be firmly on the side of morphine.

5) Reassure them that you want to be “you” as much as they want you to be you. I don’t know why so many people can’t see how upsetting and painful it is to be forced into a stupor against your will at unpredictable times. Especially when the alternative is blinding pain. There’s no win there.

I don’t know, there’s probably more, but that’s the stuff that comes to mind. Empathy is the key thing, really. And, well, good luck all of you.