In velvet and tatters

This one’s not something that I ever really talk about, but I have a real problem with clothes.

 

This may seem ironic coming from someone that sews their own, but there it is. Effectively, on a disturbingly regular basis, I don’t know what to wear. Not just the fairly-normal “I don’t know whether to wear jeans or cords to this event, since I don’t know how formal it’ll be” but ranging from that right up to “I know I have to leave the house, but I don’t know how to even start thinking about getting dressed.”

 

It’s weird.

 

I’ve got, in efffect, two “wardrobes” – One of them is fairly modern, skewed towards goth just because it’s on me; T-shirts, army surplus, fleeces, one pair of jeans, and the other is the stuff that I’ve made and the things that go with it; Suits, trousers cut in a slightly Victorian fashion, collared shirts, waistcoats. There’s not a formality or practicality difference between the two – I’ve got slobbing-around-the-house-to-be-seen-by-nobody waistcoats, and t-shirts that I only wear when I’m really trying to impress – so I suppose the first hurdle is always “Which wardrobe do I pick from?”

 

Even in the absence of that, when I know that today is definitely a modern dress day, or definitely a made-it-myself day, I usually don’t know how to get dressed. I spend so much time in pyjamas and a norgie that wearing anything beyond that is stressful; What will people think of me, wearing a T-shirt and jeans? I’ll stick out like a sore thumb and look like a slob. What about in a waistcoat, where people will think that my cane is an affectation to look eccentric? How do I button up a collar, will it look wrong without a tie? If I wear jogging bottoms, where will I keep the things I normally put in my pockets?

 

This all gets worse once you start trying to also account for the weather – I genuinely have to be reminded to get a coat, because I’ll be cold. My friends are proud of me when I independently remember to wear gloves, or underwear, and in summer they’re even more proud when I manage to do something – anything at all – other than lie around in the house naked and ignoring everyone.

 

Then it gets worse again – if I’m going somewhere with someone else, what will they be wearing? I don’t want to look like a total scruff next to them, or look pompous, or, worst of all, match. Especially if that’s matching-and-both-looking-eccentric, which is basically always a likelihood.

 

Somehow, I find this all much more embarrassing to talk about than things like, for example, micro-enemas. Most of the time I would literally rather share graphic details of putting things up my own arse in an attempt at removing a few kilos of faeces, than talk about how I have managed to get to thirty without knowing how to dress myself reliably in the mornings.

 

It was easier when I worked in a lab. I had a pair of assault boots, a pair of steeltoed boots, six or seven T-shirts which were identical but for the colour and logos, three pairs of chemical-stained jeans, a hoodie, and (once I got to work) a short-sleeved labcoat. They got worn in rotation, with thick boot socks and thin undersocks, and there was no question about what I needed to wear, or when to get dressed. The bus was at 8.10, I left the house at 7.45, I was in work by 8.40 at the absolute latest.

 

Prior to that, it was even easier when I worked for a conservation charity – Steeltoed boots, canvas trousers with as many pockets as they could hold, green T-shirt with the charity’s logo on it (one of several, in various sizes and with varying degrees of paint spatter and ingrained sawdust), and either a padded hi-vis or a barbour jacket in winter.

 

Nowadays, it’s just difficult. The combined anxieties of “Are my clothes clean?” “Do I look presentable?” “Will I freeze/boil?” and “Will I be ale to do all the things needed whilst wearing this?” result in a lot of days of just lying in the house in my pyjamas. When I ned to go out, I’ll usually get Best Friend to phone me and talk me through getting dressed; “Do you have a shirt on? Good. It’s cold, so you’ll want the houndstooth trousers or the moleskine ones. Do you want a waistcoat? You don’t need one, but they’ve useful for carrying stuff. Bring a wooly jumper, either way…” complete with usually one or two utter panicks on my part where I take everything back off and sit there wrapped in a duvet and saying that I don’t need to go out at all.

 

If there was a routine that I didn’t feel nervous about, I’d probably manage, but it clashes with so many other anxieties. Maybe I’ll just wear a toga from now on.

 

I know I’m not the only person who does this, but nobody talks about it.

 

 

After while, you just forget that everything smells of petrol now.

Today in Further Shit I Did Not Need, someone cased up my bike.

 

Drove past, incredibly slowly, in a flatbed lorry, and the passenger leant out, eyeballed the bike, took a photo of the lock, then drove on. Then they turned around at the bottom of the road, and did it again on the way back up.

 

The solution to this?WIN_20151215_21_59_31_Pro.jpg(Dog on settee, in comfortable parlour, with the front wheel and head assembly of a GZ125 lurking in the background like a guest that’s not taken its shoes off.)

 

Today has been a bit of a push on the Christmas front, though, which is definitely a good thing.

 

To whit:

 

Sweets for Grandparents arrived.

Books for Parents have been dug out.

Whiskey for Dearest’s Family has been found and dusted.

Hot cushions for Nieces have been sewn up.

Cuddly toy for Dearest has been finished apart from the appliques.

Smoking cap for Best Friend has been finished but for the lining.

 

Meaning all that’s left to do is finish Dearest’s thousand stitch belt, wrap everything, and then get my bike down to the garage on Saturday morning to have the heated grips fitted, before going up North.

 

I have also recieved a couple of lovely presents and cards from fabulous internet friends, which have basically made my entire month. Friendship is awesome. I can see a lot of internet friends getting Januarymas presents, once I’ve sewn my head back on straight, drank most of the whiskey, and calmed down.

 

This has actually been a pretty good week, overall. My leg is healing with the speed that I’m used to (to whit, unnaturally quickly), my ribs and shoulders feel like normal-hell, rather than had-a-bike-drag-them-along-the-carriageway-hell, and Dearest has done basically all the laundry, so I’ve got safe stuff to wear to go North in. And, possibly best, me and Sambuca have arranged to meet up in York in January. So things are going to be good. It’s always been a comfort to me to have things planned for after the big-difficult-stressful stuff (The classic ones always being having a holiday planned after my exams, a night out planned after a hospital appointment, and a few days at a friend’s house after visiting mine or Dearest’s families) and this is my thing that I’ve got planned for after New Year.

 

All is well.

Exitaining

Most of this week has been shit. Healing a broken leg, getting serious self-harm and suicidal ideation that resulted in a long, tearful, wordless phonecall to Best Friend and feeling genuinely low on blood for a few days, and on top of that having to do about eighty hours of sewing and embroidery for everyone’s Christmas presents, since Christmas has been moved forwards to the 19th.

 

So today I got back on the bike for the first time since my unplanned dismount (saddle ventilation break, inline leg stretch, high-speed tank vault, bike taking a nap, back wheel going on strike, interviewing for a job as a speedbump… insert eumpemism for ‘unpleasant crash’ here) and part of me really didn’t want to. Part of me said “It’s only three months until Spring, the weather is horrible, you’re cold, you’re still depressed, you don’t want to get on a bike with no front mudguard…” and part of me knew, from fifteen years of horseriding, that if I didn’t get back on now, I’d never get back on.

 

Route planned – Due to the vagaries of the city’s one-way system and the interlocking ring-roads, I would drop down onto the ringroad, go around about a third of it, then turn down one of the radials, then onto one of the long tangents which had once been one of the main roads, but was now basically just the high-street for a few of the swallowed towns, then onto the radial which the garage was on. My destination was the garage, to buy some heated grips, look at a few things for Dearest, and ask about getting replacement parts for the bits of bike that were now littering my bedroom floor.

 

In the short term at least, I’ve managed to Araldite my indicator back together, which makes it road-legal, and was fairly resigned to just being my own front mudguard for the next few weeks.

 

I’d not been on the bike for nine days, which is a hell of a long time when for the previous four months I’d been on it every other day.

 

And, well, it was a good ride out, and a useful one. The ringroad ranges between sweeping dual-carrigeway modern a-road curves, via old-fashioned 30s-build broad-laned straights, down to a few stretches of old, twisty path that’ve probably been there for centuries. The radial road was likewise one of the antique ones, shrouded in fog, with standing water in a few places, and lit with Christmas lights. I stopped into a petrol station, filled up the tank, and turned onto the long tangent.

 

At this point, I have to have a very stereotypica biker rant: Fucking cagers, man. Do people get blinkers and earplugs stuck on them the second that they get behind a steering wheel, then get some kind of injection of rage- and stupidity-inducing drugs?

 

The number of drivers that decided that it was more important for them to pull out in front of me, or merge through me, or do a U-turn in the middle of a busy road just below the crest of a hill, so that they could get home thirty seconds quicker than they would otherwise, than it was for me to get home at all, was frankly mind-boggling. On your driving test, you fail immediately if your actions cause another driver to have to slow down or divert their course at all. I would have failed at least a dozen drivers today. One of them – Who had pulled across a busy junction and sat in the middle of it, failing to understand that if a queue of traffic isn’t moving you’re supposed to not sit in the yellow cross-hatchings – Had his drivers’ side door and headlamp completely crunched. That kind of damage on a car terrifies me, since it usually means that the driver is an unobservant fool. Another driver had the amazing idea of pulling onto a roundabout that I was already on, and getting within six inches of taking out my back wheel. A third decided to try to undertake me in a single-lane carriageway, between parked cars, in front of a school.

 

Cagers, I have a small plea for you. You are wearing the most advanced armour that money can buy, you have airbags and steel bracing and crumple-zones and antilock brakes and climate control. I have a leather jacket, a polystyrene helmet, and three pairs of socks.

 

Your car is an extension of your house, it’s got room for food and maps and trinkets, you can talk to your passengers or people on the phone, you can take your hands off the wheel and stretch and rest at traffic lights. If you exhausted you can pull over into a layby, lie down across the back seats, and sleep. My bike is an extension of my body, I feel every bump and slip and gust of wind, whether through the back wheel and into the seat, or through the front wheel and into my hands. When I stand still, I am holding up the hundred-and-fifty kilos of bike with one leg, whilst the other foot pushes as much of my weight as possible into the back brakes, stopping it from rolling away.

 

If you skid on a corner, you will end up embarrassed, with a hefty repair bill and a long wait for the AA to tow your car home. If I skid on a corner, the best case scenario is a few bruises and a concussion, and the worst is a broken neck and death.

 

I drive carefully, I read the road, I don’t take stupid risks. If I’m doing 35 in a 40 zone, on a wet day, it’s because that’s what my machine can safely do. If I’m slowing down and crawling through hairpin bends on a country road, it’s because the road surface is dusty and skiddy, and I can feel my back wheel sliding out from under me. When you overtake, too close and on a bend, to make those extra five miles an hour, you are saying that a minute of your time is worth more than my life.

 

There is no moment wherein being on a bike is not tiring. Most of the time, it’s exhilerating, and even on the worst of days and most staid of routes it’s refreshing to feel the fresh air, the smell of the outdoors, the satisfaction of a machine doing what it’s told and letting me travel faster than any human could unassisted.

 

One of the big things that perked up my day was seeing that the Suzuki Intruder I’d had my eye on earlier was still there, and I got to have a brief sit on it to determine what I thought of the weight and riding position. Answer – It’s shorter and fatter than the Marauder, and obviously more powerful, and heavier, but the weight is lower so somehow it feels lighter. And I want it.

 

Today has been good. I got to go for a ride, which was fun, I got to look at bikes, which was also fun, and now I’m home and curled up in bed again. Things are good.

Desmond Strikes, part the second

So, when we last saw our intrepid hero, he was lying in bed, trying to sleep off the effects of a fairly minor-in-the-grand-scheme-of-things crash, and worrying about a smashed indicator and a parking ticket.

 

By about 7pm, he’d been persuaded to call 111, just to get checked out. The story continues;

 

“Is that a male name, or a female name?” “It’s just my name”

 

The dispatcher really needed to know. This was the most deadly important thing. Having found my records by my address, my full name, and my date of birth, they had to know. This was the thing that would determine if I was the right person, or some kind of imposter.

 

“Yes, but is it a name name, or a female name.”

 

I bit my tongue against saying “It’s the name I lowsided my bike in.” and answered. She seemed relieved. Now she knew whether to send the Cindy’s Dream Ambulance, or the Thomas the Tankambulance.

 

But the short version was that I needed the ambulance.

 

The paramedics arrived within half an hour, and were basically the traditional Good Cop, Bad Cop. One sympathised about how bad EDS was, the other demanded to know why I didn’t have a job. One commisserated about the bike and talked about his friends who were bikers, and the other told me that I couldn’t take my morphine or my stick into hospital, since I “didn’t need them”, and actively tookt he morphine out of my hand and put it out of reach. I didn’t have the strength to point out that this was immediately contrary to the hospital’s guidelines on medication, which say that you should always bring your medication with you.

 

The tone from both of them was pretty much “And you rode home, got changed, made yourself some tea, went upstairs, got into bed, and waited five hours before deciding that it was worth calling an ambulance? After crashing your bike and turning your foot through a hundred and eighty degrees? You’re an idiot.” but from one of them it was affectionate and understanding, and from the other it had a ring of disbelief about it.

 

Thankfully, the more pleasant one was the one who sat with me in the back of the ambulance, after they’d slid me down the stairs in an evac chair (Hell on the  lower back, by the way, avoid if you can), and passed me the nozzle of the entonox. He said that if he’d not just taken my pulse (135) he wouldn’t have believed how much pain I was in, because I was keeping it together rather well. I thanked him, disclosed that as soon as I took the entonox the mask would crack and I’d just be like a normal person in pain, then took it anyway. It took two lungfuls for me to start crying uncontrollably and screaming in pain, then about three more before I wasn’t in pain anymore, and was just really upset.

 

On the drive up, we were overtaken by a delivery boy on a scooter, who was being flung aorund in the gale-force winds as much as I had been. No amount of financial compensation should make it worthwhile to risk your arse on wet roads in the dark, in gale-force winds, on a bike that weighs next to nothing.

 

We got to the LGI, I got settled into a booth for a long wait, and was plied with morphine. Nurses came and went, took my blood pressure and pulse, and it wasn’t all that long before I met the first doctor, whom I’ll call Dr RZ. RZ was really helpful, and very much into the school of “You have to look at, and touch, your patients as well as asking them questions.” He felt around my ankles, knees, hips, ribs, hands, the worst of the shoulders, and listened when I said that the pain from the crash and pain from EDS weren’t all that different – Both came with a lot of stiffness and soreness, both hurt when lying still as well as moving, both made things weak and fail to hold weight. He decided on x-rays for the knee, the hip, the whole pelvis, since a hundred-and-fifty-kilo motorcycle had fallen on it at fairly high speed, and the ribs, since they looked cracked from the outside. He also knew to ask the important question; “Is the bike all right?”

 

Radiology was great, and prompt – Two impossibly young technicians, both eager to do their jobs right and to make sure that the patient was fine and in one piece, who took endless views of basically all of me, whilst making cheerful small-talk about radiology in general. And then I was wheeled back to my bay to wait.

 

I must have waited quite a while, since it was nearly midnight when I asked if I could have a cup of tea, and was refused, and by that point I’d done a lot of embroidery and read a lot more of the Reverse Of The Medal.

 

It was one in the morning by time I was visite by Dr RZ again, along with another doctor who must have been an orthopaedic that I’ll call VT, because he was the tallest person I’ve ever seen. Now it was VT’s turn to try mobilising my leg, which he managed, and then said “Yep, this and the x-rays… You’ve got a chipped fibula. Which takes 13% of your weight, so walking is going to hurt.”

 

Comisserations were passed around, I declined having a pot on it because I wanted to be upand about, and I was plied with more morphine and told that I could go home.

 

And that was when I descended into hell.

 

I’d come out with no money, in my pyjamas, with only the bag that I’d taken out with me in the morning, which contained a towel, a notebook, a novel, some embroidery and, as I later realised, an empty bottle of morphine. So I went to the nurses station to ask if they could book me patient transport. Nope, they didn’t do that sort of thing, I should have thought about that before I left the house. They could give me a number for a minicab firm though. I tried six minicab firms, under their watchful eye, none of which were picking up, because it was a Saturday night at half past one.

 

The matron told me to walk down the corridor to the hospital account phone, since then the biggeest local minicab firm would have to pick up. Lo, they did not, even though I’d walked all the way through the department to get to the phone.

 

I came back to the nurses’ station. I was told that I’d just have to go out and try to hail a taxi from outside.

 

The nearest cab rank was at the railway station. So out I went, into a hundred-year-storm, freshly dosed with far too much morphine so I felt sick, in a pair of flannel pyjama bottoms, a t-shirt, one thick sock and one thin sock, trainers with the laces untied, a walking stick and a broken leg. At about half past one in the morning.

 

I was halfway to the station before a passer-by, a South African exchange student, stopped to help me. She gave me her scarf, sat me down in the lee of a building, phoned another dozen minicab companies for me, phoned two of her friends who had cars, all the while coming back to check on me between calls, to make sure that I hadn’t frozen or died, until eventually she managed to flag down a taxi for me. Grateful in extremis, I gave back her scarf and wished her well, and was still mumbling my incoherent thanks long after the taxi was speeding along the ring-road back to my house.

 

I got home, told Dearest and a few others that I had indeed ridden home on a broken leg, in a storm that had closed half of the country, and passed out in a heap on my bed.

Desmond Strikes

Today was all kinds of shit.

 

I set off with good intentions – Bike into my tutorial, study, coffee in the city, ride over to the garage to pick up some heated handwarmers, then home, then back out again to the 5pm swim at B.

 

I parked in the University, walked down, put my bags in the tutorial room, and after a couple of minutes, the tutor mentioned that parking in the University was expensive if you didn’t have a permit. I didn’t have a permit so, not wanting to be fined, left my bag and my norgie on my desk and went out to “just move the bike” – Intending to quickly run it around from the University to my usual spot next to the art gallery.

 

Instead I got stuck for literally an hour and a quarter in the one-way system, looping repeatedly around the city centre and the surrounding industrial wastelands, being led up endless streets that suddenly turned into “No cars or bikes between 2am and 8pm, unless it’s the weekend after a full moon but not when sunrise is between 7.15 and 7.38am.” and trying to find somewhere, anywhere to ditch.

 

The street next to the art gallery was closed for a Christmas market, shutting off about a quarter of the roads. Another set of streets were shut due to the high winds. Eventually, I got into a car park next to the venue, which was Pay and Display, and since I wasn’t confident on Displaying without having someone steal my ticket, I instead parked in a coulcin-operated disabled bay instead, outside of the car park.

 

I at least made it to the last forty minutes of my tutorial.

 

And upon getting out, my bike had been ticketed, for parking in a disabled bay.

 

I made a mental note to contest is, then decided that since the weather was getting insane, I was just going to go straight to the garage, then bunker down there for a bit and warm up.

 

Upon getting about halfway to the garage, I decided that I’d rather not be out in the dark, so turned around and headed home instead. The wind, by this point, was brutal gusting up to 80mph, it was like being physically slammed by a big, fast vehicle.

 

I managed to hold it, on the wet roads, with rainbow oil slicks every few hundred metres, with the wind cutting me across to the point that I could barely hold my lane, until I got to the last hill at the last crossroads, less than two hundred yards from my house.

 

And then I lowsided. The front wheel hit an oily grating at exactly the same moment as I passed a side-street, which the wind was howling straight down. The bike went down, somehow turning my foot around a hundred and eighty degrees in the process, leaving me lying on my side with my right leg pinned unde the bike, my leg twisted around backwards and pinned under the crsh bar, so that my right foot was facing in exactly the opposite direction to the rest of me.

 

It took four people to lift me clear of the bike, getting the bike upright as well, and dragged over to the steps of the estate agent. I was doing fine, more worried about my bike than myself, until there was a cup of tea in my hand and I’d started her engine to make sure it wasn’t flooded. And then I realised that my right leg wasn’t just sore, it was wrecked. No way I could put any weight on it.

 

I got back into the estate agents, aided by M, the first aider and first on the scene – Not a biker, but friends with enough bikers, including a disabled triker, to know that this was normal – who let me curl up on the floor, then helped me out of my boots and out of my leathers, so I was sitting there in my baselayer. Upon getting the trousers about half way down my hip, I heard a high-pitched scream, right on the edge of hearing. It took a second for me to realise it was me.

 

“That’s what I was worried about” said M. “That hip is all wrong.”

 

I looked at it, Sure enough, it was dislocated. D, the estate agent, took my feet and got my armour down off that leg, so that I could roll my baselayer up. My calf was bruised already, and my tibia was in front of my patella.

 

I directed M into my rucksack, to get the morphine, and I drained the bottle.

 

What followed was a lengthy, incredibly painful, reassembly, with much debate over whether I needed hospital, or how to get home, or whether to ride home, or whether to get Dearest to pick me up, or one of any number of other half-remembered options. Eventually it was decided that M would take me home, me riding the bike at walking pace, him walking alongside, hazards on and being careful.

 

My leg back in one-ish piece, I was helped onto the bike (Unable to move my own right leg, M had to lift it over for me) and we made a sad procession back to my house. At my door, I wanted to offer M a bottle of whiskey, or chocolates, or something, but after a second’s hug and an exhortion to ride safe, he was gone, a hi-vis clad figure vanishing back into the storm.

 

And now I’m back home, sincerely wishing that I’d not left the house this morning. Storm Desmond has closed most of the UK, Cumbria is underwater, the valleys are flooding, trees are being blown over, and I’m not going back out in it.

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.