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.

Appointments

I promised I’d write about the osteopath visit.

In truth, there’s not much to say – He seems like a nice boy who wants to help, and also he seems really well-informed.

I said that I had hypermobility syndrome, and he outright asked “EDS-type or Marfan-type?” and then knew what he was being told when I said “EDS-type” – He asked if I got the bruising and fragile skin, and if I got just subluxations or also full dislocations.

He was, crucially, sympathetic. He told me of having known someone else who had been treating a Zebra, and how they’d basically just played merry-go-rounds with symptoms. The key thing, he reckoned (before I even mentioned it) would be chasing down whatever was over-tense and in spasm, and loosening it out. Nothing directly on my joints, not faffing with my spine.

He was straight-up honest; “You won’t get any improvement. You might get relief, week by week, but what we’ll be doing is chasing symptoms and picking a bit at a time, and trying to help you through the damage from whatever’s happened in the week before.”

I said that I’d seen a chiropractor before, and that I’d been badly injured by them, and he agreed that trying to do any manipulations (apparently meaning something specific in osteop terms) would be irresponsible and do more harm than good. He asked if physiotherapists had ever used massage or physical manipulation to try to treat me, and I told him truthfully that, other than C who did a lot of touching to correct my posture and A who had seen me long before my diagnosis, so was just treating the back pain, largely by trying to remove my legs one at a time, physios tended to be frightened to touch me in case pieces came off. He looked sad at that. My response was just to shrug, accidentally dislocating a shoulder.

But then he forgot that he wasn’t a doctor – He definitely wanted to push for osteopathy, rather than sports massage, since the sports massage “was too generalist”, and he really believed that osteopathy was the way to help me.

In truth all I need is a bit of a massage, of greater technical competence and frankly force than can be managed by someone totally untrained, but if I wanted something as specialist as what he was claiming to be able to offer, I’d be looking for a physiotherapist.

I can definitely see how someone who didn’t know that osteopathy had a very shaky evidence base would sign up – I’m undecided on whether or not to, since I do love the placebo effect, and I could just about afford this once a month or so – and having someone offer to help, and appear to genuinely care on a professional level, was rare and honestly felt nice.

I’m having to remind myself that the last time I got a massage here – After a nasty crash at roller derby – I walked away with a dislocated shoulder that didn’t sit right for a month. Not the same practitioner, but the same establishment.

But still, tempting.

I’ve talked about placebos before, how using them when you know that all you need to do is to safely switch the nociceceptors to “off” for a while isn’t actually the worst thing you can do (Getting to sleep by counting my beads is much more pleasant than getting to sleep by taking downers, and the former is good enough in about 25% of cases) and I’ve gone on at length about how a self-directed placebo can make things more bearable. I’ve also ranted about how putting the power to deliver that placebo into another person’s hands – Especially the hands of someone who wants to take your money – is a terrible idea.

But I can see why people might want to.

Oh, unrelatedly, my eye test showed that I was very slightly shortsighted:  -0.25 sphere in the left eye, and -0.25 sphere, -0.25 cylinder and 100 axis in the right eye. So basically negligibly wrong, but I’m definitely not wrong to think that things are now blurrier than they were. I’m tempted to get very cheap glasses anyway, to see if I’ll actually wear them and if they actually help.

Oh, and tomorrow I’m going to see my family for the first time in nearly a year. Wish me luck.

Wheels within wheels

Migraine, day twelve.

Actually feeling a bit better, due to the vast quantities of morphine yesterday night – I slept for sixteen hours and woke up in no pain – so today I’ve been making plans.

Firstly – My buttons have arrived, so I can get on with sewing up my waistcoat. They’ve turned out to be ex-Merchant Navy, with the George crown, so they’re not current insignia so I feel fine about wearing them. Need to give them a good polish, pick out fifteen that match, and get on with the buttonholes. Sixty buttons for just under a fiver, so I’m pleased with that.

Secondly – Booked in for my first ever eye test at three tomorrow, so we’ll see how that goes.

Thirdly – Booked in for a free fifteen minute consultation at the painvultures’ at 13.30 tomorrow. I was deliberately vague on the phone; I said that I have all-over joint pain, including my back and neck, so they obviously immediately said that I needed an osteopath. The receptionist was, however, very careful about not suggesting that osteopathy would cure anything.

If the osteopath doesn’t take one look at me and say “No, this would be dangerous and irresponsible” I am going to be horrified. Obviously, I won’t let them touch me – I’m not actually insane, I know how much damage they can do – but this could be very telling about the integrity of their practice.

If it turns out that they are happy about snapping the necks of the hypermobile, they are going to have Problems.

So, tomorrow should be busy.

Also, having missed the actual Spring Equinox for my Day In The Life, I’m going to do it tomorrow instead, just to keep it close. It’s between the actual Equinox and the start of BST, so it’s close enough.

A very stripey pigeon

I have a Plan.

There’s a woo practitioner at the end of my road.

Let me start again; There used to be a pub at the end of my road called The Junction, which had been a pub for well over a hundred years. It closed down in 2009 and about a year later it re-opened as a massage establisment – Not in the way that you’re thinking, I mean it did sports massage and deep-tissue work and light physiotherapy and things like that. I went along for a back massage once after a nasty shoulder injury, and spent a cheerful half-hour having my muscles Hitachied into submission and then kneaded like uncooperative terracotta. I came out feeling like a new man, or at least like all of my pain had been centrifuged out and was now sloshing around in a jar in what used to be the keg cellar (what do they do with all that pain?)

Fast forward a few more years, and a sign went up – Acupuncture, free 15-minute consultations and trial session. And then chiropraxy, osteopathy, reiki, reflexology, aromatherapy, Swiss reflex technique, Thai yogic massage… Oh, my. Claiming to treat chronic conditions, arthritis, headaches, stress and pain.

But one part of the sign interested me. Free consultations. Free ones. That were free, and would cost no money, and which claimed to be able to diagnose what was wrong with someone, and then to treat them with one of the above. And that are free, and within fifty yards of my house.

This, you must understand, is an irresistable lure to a chronically-ill troll and sceptic. Obviously, I won’t let anyone chiropract or osteop me (EDS body parts are easy to accidentally unscrew, and hard to put back together) but finding out what an untrained wooster makes of a rare and horrible condition, and crucially seeing if they’re going to claim to be able to treat it, is going to be fun. Also, I perversely enjoy being used as a human pincushion, so that’s a win-win.

It’s Sunday today, so I might pop in for a quick chat tomorrow. With my dictaphone.

Released.

Long story short, physio was completely ignorant and gave me the boilerplate “End Of Physio Course” speech that I’d already had from C3, and seen my best friend get given twice from C1; “So, that’s a big improvement – If we discount [all the things that have worsened] and focus instead on [single episode of something which wasn’t literally torture] then this has been a big success!” whilst giving themselves a nice big pat on the back and talking over the patient.

In this case, he asked how often I’d been swimming since last I saw him. “Once or twice” I said. And he responded “See, that’s really good, more than you’ve done in the last six months!”

I took a long look. I twitched.

“I’ve been swimming. Three times a week. Since March. You based everything you’ve said to me in our last two sessions around this fact.”

“Ohh.” he said “I forgot.”

“And the Positive Care Programme – That was all pseudoscience.”

“Well, it was just a suggestion!”

“And the health trainer thing – Didn’t operate in my area”

“Oh well. But you went swimming! So one out of three isn’t bad!”

And he smiled the smile of someone who was incredibly happy to take the credit for someone else’s progress, when what he’d actually done was destroy their self-esteem and ruin their enthusiasm for keeping in shape.

Anyway, that was my last physio session. I’ve handed a copy of my London letter, and my Rheumatology letter to my GP, and I’m going to focus on getting in shape for Stanmore. And continuing my rampant autodidactism on all things physiotherapy.

Suspense

So, tomorrow is physio day again and I am, predictably, not looking forward to it. This is the appointment I’d been thinking about cancelling since I got on the bus back from CA last time.

For a quick recap, the last time I was at physio, Physio G berated me about needing to use a wheelchair, denied that the major symptoms of joint hypermobility syndrome existed, and did his damnedest to insinuate that I was a big lazy failure. He then handed me a huge pile of literature about alternative medicine and lifestyle changes (Which boiled down to “lose weight”, “eat less”, “exercise more” and I quickly worked out that as someone who was clinically underweight, couldn’t afford more than one meal a day, and spent as much free time in the water as was physically possible to keep my strength up, it didn’t apply to me) whilst telling me that he was the biggest sceptic ever born, and sent me on my way.

Since then, I’ve physically gone downhill a little bit. Funnily enough, being thoroughly demoralised about being a drain on resources isn’t the most motivational thing in the world, and my swimming and exercise regimens have, commensurately, dropped off.

It’s now 02.00, the appointment is at 13.00, and I don’t think I’ll sleep before then.