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.

 

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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.