What have you got to lose?

We all know the well-meaning but annoyingly insistent friend, relative, colleague, or random stranger who wants you to try their miracle cure. Olive leaf extract! Apple cider vinegar! This awesome probiotic! And that line: “well, what have you got to lose?”

The answer is actually quite a lot. And I don’t have to write it, because Ricky has already done it over on her Energy-Saving Selfcare Tumblr. She’s given me permission for a long excerpt, but do go over there and read the whole thing.

1. Opportunity cost. If you’re trying one thing you can’t try another thing with that time. If trying a one treatment stops you from pursuing something else (because you can’t do both at once) that’s opportunity cost.

2. Money. Most treatments cost money out of pocket, no matter what your insurance. Money for medications/supplements, money for tests, money for appointments, money to pay for getting there and any time off work you need to take to pursue that treatment.

3. Energy. We are all low on energy. Using energy to go see another medical professional, cook special food, source and purchase special supplements, etc. If you’re using up your energy on that you aren’t using it to be with your family, get your job done, study, hug your kids, or rest.

4. Risk of side-effects. EVERYTHING can cause side-effects – even something that seems low-risk like changing your diet or taking a pro-biotic or seeing a chiropractor has risks and can do you real harm. Many of us are more prone to side-effects than other people seem to be, so this is a bigger worry. And not all side-effects go away when you stop whatever caused them, so you may be risking long-term problems. Any treatment powerful to change your body in positive ways MUST be powerful enough to change it in negative ways too.

read the rest here

And while I’m on the topic of trying things out: supplements are already not the best regulated things in the market. And it could soon get worse. Choice is running a campaign to prevent marketers from being able to claim literally anything they like on their products. Looking for a sleep aid? The label could legally say this pill helps you sleep, while the contents might be nothing but lollies.

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You can click here or on the image to go over there, read more and sign the petition.  It needs to be done before 25 June 2018.

 

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ME and me, Australian edition

What is this ME/CFS Thing Anyway? Part 3 of some unknown number.

Part one here

Part two here

So previously we learned that there is no diagnostic test, and there isn’t even an agreed-on checklist of symptoms. Also, we noted that ME/CFS is not a mental illness. Today, let’s have a look at the Australian symptom set,  and how they apply to me.

These criteria are a community sourced set from Emerge Australia, the Australian ME/CFS education, activism and all round community umbrella group. It’s based on the International Consensus Primer (ICP) for Myalgic Encephalomyelitis (ME), but simplified down to the essentials, and plain language, and the highest relevance. References to more technical papers and discussions are provided, so it’s a good page to start learning from.

I am a member of Emerge Australia by virtue of being a member of the ACT ME/Chronic Fatigue Syndrome Society The ACT group has support group meetings and talks and stuff, which I almost never go to because I have ME/CFS. Ha. I should write more about them later. They run an awesome education program.

So this is the Emerge list:

Primary symptom (compulsory for diagnosis):

  • Overwhelming post-exertional malaise as a result of minimal cognitive, emotional or physical effort. This exhaustion may occur immediately after activity or be delayed by hours or days.

A range of simultaneous symptoms (several of the following):

  • Sleep problems/disturbances;
  • Widespread pain and headaches;
  • Neurocognitive dysfunction:  short term memory loss, concentration impaired, confusion, disorientation, hypersensitivity to light and sound, emotional overload;
  • Problems with dizziness and balance;
  • Problems with body temperature (including intolerance of extremes of temperature) and weight;
  • Recurrent flu-like symptoms (e.g. sore throat);
  • Gastrointestinal Problems (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome (IBS))
  • Sensitivities to food, medications, odours or certain chemicals.

The manifestation of symptoms is highly individualised. There may be marked fluctuation of symptom severity from mild, moderate to severe (vide infra) and this hierarchy changes from day to day and hour to hour. A relatively small (25%)(ME Alliance report) proportion of ME/CFS patients suffer in the severe end of the ME/CFS spectrum. For them the range and severity of symptoms are quite marked and they may be house or bed-bound and require a wheelchair to be mobile.

How does this apply to me? I have all of it, and more, but in highly variable amounts. If you’re after a general education on ME/CFS and don’t want the personal TMI, you may not bother to read on. As noted, it’s “highly individualised”. This is how it applies to me.

Post exertional malaise (PEM)

Hell yes. Primarily exhaustion, but this is also where other symptoms are likely to be at their worst. This post has something of the PEM experience.

Sleep problems/disturbances

I’ve already blogged about sleep problems, and probably will again.

Widespread pain and headaches

I’m pretty lucky here in comparison to some, my pain levels are low. I get muscle aches  and generalised body aches and assorted other aches when I’m in PEM, and I always have a headache. Curiously, since becoming ill I have not had trouble with migraines. A side benefit? I was having pretty bad perimenopausal migraines, but they stopped after I became ill, which was a couple of years before the menopause kicked in.

Since my pain levels are usually quite mild, I only take paracetamol a few times a week. I do resort to lavender oil and such for minor relief. I get temporomandibular joint (TMJ) pain and tooth aches at times, especially when in PEM. The TMJ pain may be from clenching my teeth a bit too much, a recent habit that I am trying to break. My teeth are actually fine, it’s referred sinus pain. TMJ is a stress pain. In these cases, that lavender or peppermint or tea tree oil has genuine therapeutic benefit.

Neurocognitive dysfunction

I definitely find my concentration impaired, and I experience confusion, clumsiness, and intermittent aphasia when I’m not at my most alert. I’ve written about this under the commonly used term “brain fog”.  I also have the hypersensitivity to light and sound, especially sound. Loud noises can feel physically painful, like a nail in the head. Sometimes bright light is problematic too, but on other days I can enjoy the sunshine.

Problems with dizziness and balance

Yeah, some of these. Not all the time. Not long lasting. It’s like having low blood pressure except that I don’t. I used to run a bit low, for decades, but it suddenly went up a couple of months before I got sick. Coincidence? Orthostatic intolerance is another term often seen, as is postural orthostatic tachycardia syndrome (POTS). I certainly check the boxes for those, palpitations and blurred vision and all, but I’m fairly sure it’s secondary to the ME/CFS.

Problems with body temperature (including intolerance of extremes of temperature) and weight

This too. I layer. And it’s not just all too hot or too cold. Sometimes it’s both at once. I might be wearing a thin T-shirt, and PJ pants, woolly socks and a blanket over my legs. Or I’ve got on a heavy shawl and cardigan, and I’ve kicked off my socks and have hot legs. I often vary between too hot and too cold in bed. It’s no great drama. As for the weight, I don’t know. I gained a massive 15kg in a week once, with no variation that I was aware of in my lifestyle. I attribute that sudden shift in the set point to menopause, but who knows? Maybe it is the ME/CFS.

Recurrent flu-like symptoms (e.g. sore throat)

Yep. Especially in PEM. The sore throat is often the first sign of the malaise arriving. Overall body aches and hot & cold chills and a much worse headache than usual are part of this suite.

Gastrointestinal Problems (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome)

I’m pretty lucky with this one – I have pretty much no GI symptoms, except for some nausea with the worse levels of fatigue and PEM. Oh, and I’m pretty sensitive to magnesium – it goes right through me as the proverbial dose of salts, which it literally is. But I have no idea if this is new, since I never tried taking it before I was sick.

Sensitivities to food, medications, odours or certain chemicals.

Again I’m pretty lucky here, not too much trouble. A weird thing is that I cannot stand the smell of eggs in the morning; it makes me gag. If the Bloke is making himself eggs for breakfast, I can’t be in the kitchen. Lunch or dinner are still fine, which is good because the Bloke makes a very excellent omelet. I never had this problem before getting sick. Full English at the B&B to stoke you up for a full day’s walking: no worries!

And More

There are some other things which I’m pretty sure are part of the illness.

Fatigue

I’m very surprised that they didn’t include this in the list or, I suppose, just folded it into the Post Exertional Malaise category. It’s in the name. It’s my primary symptom. I am always, always, exhausted, regardless of previous exertion. The level varies somewhat, in the range from utterly completely exhausted, unable to summon the energy to move my hand, to pretty damn tired but I can make an effort. I’ve got another post partly written about fatigue, so I’ll come back and link it here later.

SOBOE

I also have extreme shortness of breath on exertion (SOBOE). And when I say “on exertion”, I don’t mean going for a bike ride or a dance class. I mean maybe walking 100m slowly, or having a shower, or standing at a kitchen bench chopping up an onion, or sometimes even just getting out of bed and going to the toilet. Puff puff puff.

This is a very common symptom for heart disease patients, which is why they have a standard acronym. But I don’t have heart disease. I have seen multiple cardiologists and had blood tests and ECGs and ultrasounds and all that. My heart is just FINE, thank you. Even the POTS and palpitations are just my heart responding sensibly to prevailing conditions.

It’s also not a lung problem. I did acquire asthma at the same time as the ME/CFS, but I’ve had all the tests and my respiratory specialist is certain that the SOB is unrelated. And while I do have some atelectasis (partial lung collapse) it’s not enough to explain it. My lung capacity remains pretty high – my spirometry tests put me at much higher capacity than most women of my age, despite the missing sections. (Probably due to my years of singing.)

Tremor

Does that go in with the neurological symptoms? Possibly. But maybe it’s GI or metabolic. Anyway, I can get very shaky when I’ve overexerted myself mentally or physically. I notice it more now I’ve taken up playing with jewellery. I also get shaky (and cranky) when I haven’t eaten, so perhaps it’s hypoglycemia. People can get that from over-exercising and with the ME/CFS, even standing up can be too much exercise some days.

Blurred Vision

I’m fairly sure this is just fatigue as applied to ocular muscles. It’s worse when I’m tired. My eyes are slow to respond to changes, so getting tested for new glasses is a pain. That “which is better, A or B?” series can be tricky when you have to wait for your eyes to adjust to each change rather than just snap in to focus as they used to. Luckily, my optometrist is patient and understanding.

Other

I keep thinking there’s something I’ve forgotten. I’ll just leave this space here and come back and edit it if I remember.

I went to the market

 

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And I bought persimmons and gozleme and yarn and tea and fibre and cannoli and a swift and I saw baby goats and a ridiculously fluffy chicken. Yes, I already have a lot of yarn. Shut up. And I have two swifts, but the new one is being made to order and when it arrives I’ll get rid of one.

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If you’re not a knitter you may be wondering what a swift is, since clearly it’s not a small bird. It’s one of these devices for holding yarn while you wind it up. This is not a standard design, which tend to look like topless umbrellas. Is this not beautiful?

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Handmade from Tasmanian blackwood, by Peter Mitchell of Badjacrafts – he’s not very web-enabled but he’s a regular at the OBDM selling mostly hand-turned and carved wooden pens and toys.

And this is the yarn I bought, pictured with other yarn that I already own. I’d taken it along so I could try to find a nice contrast. All three are from Fibrewebs, a local dyer. I’m very happy with this shiny gold to go with the light green variegated. It’s going to be a shrug, Flatline by Lisa Mutch.

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The other lot of yarn is going to be a brioche wrap, an interesting rectangle with pointy ends. It’s Aurora, by Cetus Knits, who I met in Dunedin. I’m not 100% convinced of my choice here. It seemed right on the stand but when i got outside I felt less sure. The teal is my main choice. I have options of a two or three colour version, and I was thinking of a silvery grey. But the grey turned out to be more blue in the sunlight and I’m not sure I like it now. The purple is a good contrast but I don’t have enough to do the 2-colour version with just that. Maybe I can find something else in my stash. Maybe I need to buy some other yarn. Decisions, decisions.

I also have some idle thoughts of getting into spinning. I’ve dabbled a little and it was fun, so I decided I would allow myself to buy one lot of fleece. This is a suri/merino blend in assorted greens. I’m really into greens these days. I used to be all about the violet purples, but I’m branching out. This one is from The Coloured Wool and Fibre Company – a small mixed box. They had other colour collections and I was very taken by a blue, teal and grey mix but that was only available in a large size. And I’m not sure I’m actually going to be a spinner, so I wanted to keep it small.

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I had a lovely time. Although I came home very exhausted after just a couple of hours, I saw many wonderful things and enjoyed the beautiful autumn weather. I was going to cook dinner, and I thought I could do it, but oops I forgot to turn the oven on. The Bloke is now bringing home laksa, so it’s all good and we can have lamb tomorrow. And we do have some seriously good cannoli for dessert.

Knitting a Trilobite

I am totally a knit nerd. (knerd?)

I have this lovely yarn, that I wound up yesterday in knit group. The thin one on the left is going to be a super simple cowl (aka neck warmer, infinity scarf etc) for knitting on brain foggy days. The thick one on the right needs to be a hat, and since it’s a gradient I need to be sure to find a pattern that will use nearly all of it.

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So I did a Ravelry search  – which is astonishingly good, thanks to Casey – and was reminded that I had the Trilobite Hat  in my queueueueueue. (It’s too long to just be a queue).  This should use most of the yarn – but only if the pattern is correct that it uses a full 200g skein of worsted weight. I worry that it might not, though: sometimes people don’t weigh their remnants and just report the number of full skeins they’ve cracked open. Sometimes they make more than one, or use the pattern to make a scarf or a blanket instead. So the ravelry meterage use ranges enormously. Oh well. I’ll use the brim as a kind of swatch and see what it’s likely to do.

This is what it should end up looking like (image from the Knitty pattern linked above). Approximately. With a dark blue shading to white oceanic theme instead of brown rocky like. And some changes to the shape of the trilobite.

trilobitesalt

I did see one project that modified it “for scientific accuracy” but after a little research, I believe that was unfair. I mean, I knew trilobites were more than one species, but I had no idea quite how MANY species there were! And genera. And families. In fact, there are ten whole different orders, and about twenty thousand species, according to this massive trilobite information site. This knitted version looks like one of the Phacopida, which don’t have the flared head shape often seen in illustrations. It’s not far off from this Flexicalymene meeki, though the central section is a bit narrow.

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So why would I want to modify it? Because knerd. This yarn is from the Falkland Islands, and so I’d like to make a locally appropriate species. Unfortunately the most aptly named Bainella falklandica has not been found in a complete fossil, so we don’t know what the head looked like. (Carvalho, 2004.) I’ve been trying to find an appropriate one, but since I’m neither a paleontologist nor a zoologist I’ve been finding the academic papers a bit heavy going. Only readable in non-brain-foggy windows of time.

I’ve managed to work out that the main varieties found in the Falklands are from the early Devonian period and their closest relatives are found in Bolivia and the Cape region of South Africa. The ones nearest to Port Stanley, the capital and the only part of the Falklands that I’ve visited, are from Caneja Creek. (Sadly none at Canard Cove,  a more fun name.

Caneja Creek. The outcrop consists of about 4 m of friable, dark brown to black silty shales and thin, laminated, very fine-grained sandstone. Trilobites were collected from the shales, including a large specimen of the homalonotid Burmeisteria herscheli and calmoniids (Bainella nilesi and Metacryphaeus cf. M. caffer).

The Burmeisteria has very widely spaced eyes in comparison to the pattern, and a very, very much wider central section, but it does have the flat head:body join (Plate 1 in the Carvalho paper shows this very clearly). Homalonotids are also found in Australia, though not the Burmeisteriae. There’s a very detailed schematic drawing at fig. 7 of Sandford 2005. But the best thing I found is a sculpture of this very same trilobite from Brasil. It’s the big one here.

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The artist is Vitor Silva, a paleo-artist from Brazil who blogs in Portuguese. These models were made for a 2015 museum exhibition. He works in several media, and has illustrated academic texts. It’s the real deal. Click on the sculpture image to go to his blog. Yeah, I don’t speak Portuguese either, but there are pictures. Smilodons! Weird crocodiley things! Most cool. You may prefer to browse his DeviantArt gallery.

So, this has been a fun little excursion around the internet, and I now feel ready to start redesigning. Probably do two of those cable-y things up the side and have the garter ridges for the centre. The tail join can have some short rows for the curve. Eye bobbles can easily move out to the edge.  The only part I’m not sure about is the centre of the cephalon. Easiest would be just to do reverse stocking stitch for the centre and plain stocking for the flatter sides.  I’d prefer to raise it a bit, maybe by knitting that section doubled – but that would mean some kind of intarsia in the round for the extra yarn, and I believe that’s some kind of black magic. Not impossible, though. I’ll consider it. Perhaps some other idea will come to mind.

I’m not sure when I’ll be able to update with the finished product. I can usually knit a hat in under a week but this one requires thought. Some days I will not work on it at all. But anyway, I’ll post pictures whenever it finally happens.

 

 

 

Prepworks slice and dice chopper

As a former keen cook, I find my inability in the kitchen very frustrating.  So I was easily suckered into buying this gadget from a mall sales stand. It looks pretty cool, and to be fair it is rather more robust than some of the plastic flimsy crap out there. It’s easy to assemble and it’s dishwasher safe.

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So, how does it work? Not terribly well, I’m afraid. The idea is that you slot in the desired cutting plate – small dice, large dice and slice, pop your veggies on and close the lid. Lever action down and bam! Cut veggies fall down into the tray below. Neato Burrito!

Well, it would be neat if it worked better. I’ve linked the image above to the Amazon page so you can go read everyone’s reviews. Some really hate it. I’m not one of those; I’d go more for the 2-3 star rating. It’s OK for some things, but not for everything, and it could save me from buying the frozen chopped onion and pre-sliced mushrooms. If I were not sick, I wouldn’t bother: for most cooks a good sharp knife and a decent chopping board is all you need anyway.

Today I woke up after a very long sleep, feeling quite alert, so I promptly wrote myself a huge to do list. Which, of course, I have not got very far with, because alertness is not the same as energy. Duh. The one I’ve done most of is getting dinner ready. I’m making a vaguely Cajun bean & rice & cabbage dish, to be served as a bed under some grilled tuna with a Cajun spice rub.

So the chopper:

  • Good on large dice onion.
  • Bad on fine dice onion, crushed the top layer rather than cutting,
  • Good on raw mushrooms.
  • Bad on whole cooked mushrooms – squashed rather than sliced.
  • Bad on slicing cabbage. No coleslaw for us.
  • Good on slicing zucchini, but too thick for the Bloke’s taste. Maybe the fine dice?
  • Good on slicing capsicum.

The slicer plate has a label saying “soft vegetables only”, with a picture of avocados and tomatoes, so I did not even try out carrots. I was going to try a few more things, but I ran out of steam.

Speaking of which, one final pro for this piece is that the veggies are captured in the container below, and it closes up quite nicely. So if you run out of steam after chopping something and have to have a rest before moving on to cooking it, that’s helpful. OK, I’ll give it three stars, not two.

 

ME and Mental Health

What is thing ME/CFS Thing Anyway? Part 2 of some random probably quite large integer

There is a long sad history of ME/CFS being dismissed as “all in your head”. It’s hysteria. It’s a conversion disorder, which is a nicer more modern way of saying hysteria. It’s hypochondria. It’s depression. It’s deconditioning combined with false beliefs, so get out there and exercise and do some talk therapy, you slacker. It’s malingering. To those people, I have this message:

 

Exclusion

Now that’s out of the way, there are still some mental health issues relevant to people with ME/CFS. And first, let me say that being tested for depression during your diagnosis phase is NOT wrong and insulting. Some people find it so, but it’s legitimately one of the possibilities that needs to be excluded before you get to an ME/CFS diagnosis. Depression can sap your energy, big time. And if you are lucky enough to have depression rather than ME/CFS, that’s great. Seriously. Oh, I know depression sucks, I’ve been there. But your prognosis for recovery is heaps better. There are treatments. The drugs often work. Your quality of life will be much better, unless you have the most severe drug-resistant clinical depression.

Comorbidities

If you do have ME/CFS, depression and anxiety disorders should still be on your radar. After all, what could be more depressing that having your life sucked away like this? You have probably already lost some, if not all, of your career, jobs, friends, family, money,  sports, recreations, passions, interests, hobbies, activities and independence. It’s a hell of a thing. And if you’re living on the edge constantly battling Centrelink, how could you possibly not be anxious?

If you’re at all prone to these mood disorders, having ME/CFS would be just the thing to bring it on. And even if you’re not, some therapy might still be helpful for you to adjust to all the losses. There’s a lot of grief to process. There’s also some suggestion that the suicide risk among ME/CFS patients is quite high. Although the statistics are rather disputable, it does make sense in context of the loss and hopelessness that goes with a severe and incurable illness.

So yeah, it’s a good idea to get yourself a mental health plan from your GP and check in with a mental health professional. You can get ten discounted visits a year, and if you’re on disability or other government income support you might be able to get some very steep discounts.  I say go for it, there’s no sense in feeling any worse than you must.

I do see a counsellor, and I find her very helpful. Recently, for example, we were discussing how hard it can be to have a sense of yourself as a valuable human being. When the world tells you that your value is in your work, and you can’t actually work, it’s easy to feel worthless.  But no matter how ill we are, we are all still human and deserve to be loved and valued as much as any other human.

Causality

I know, I know. But it’s actually possible that there are some mind-body connections that bring on ME/CFS, or make us more susceptible to it. The brain is a part of the body, not some aetheric disembodied intelligence, and by now I’m sure we’ve all heard of PTSD. Even utterly undisputedly real conditions like asthma and COPD can be linked to stress or trauma. (Of course I’m not saying ME/CFS isn’t real. It 100% is.)

There is a branch of research looking at the connection between childhood trauma and chronic illness. There is even some hint that therapy to recover from trauma can help in recovery from chronic illness. So maybe it’s worth a try, especially if you score high on the Adverse Childhood Experiences scale (4 or more is high). I have idly speculated that this may be why chronic illness is more common in women than men – you probably know the dismal statistics on sexual assault – but this is not my feminist blog. (Note: I do not have a feminist blog. I just share good feminist rants on facebook.)

Therapy is for sure not going to fix us all up right away, but it might help some people some of the time. As long as it’s the right kind. Anyone telling you that CBT will help cure you of mistaken beliefs about you being sick is NOT offering the right kind, and will almost certainly make you worse. Exercise caution, but don’t completely dismiss the idea: one bad study does not invalidate a whole field.

Resources

It seems to be the done thing these days to provide resources if you mention mentally distressing things like suicide. I’m not sure my blog has the readership to warrant it, but it seems like the right thing to do anyway. And maybe one day I will iron out the kinks and publicise this more.  (ARGH SIDEBAR WHY U NO SHOW?)

So, for the most urgent care, call 000.

Lifeline: call 13 1144  for 24 hour crisis support and suicide prevention services.

Beyond Blue: call 1 300 22 4636 for 24-hour support and information. They also have online chat and forums and longer term counselling options.