Of Ill Winds and Hackery

Part 1: It’s an ill wind that blows nobody any good.

COVID is a very ill wind indeed, and I don’t want to make light of it in any way. Oh, OK, well, maybe just a little bit.

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But here are a couple of pieces of slightly, partly, maybe a little bit good news for  people with ME/CFS.

The first item is this WIRED piece, in which it turns out that being fat is not the risk it’s touted as in the main media discussion. Since we’ve all had to give up most of our exercise, and many of us are taking antidepressant and antihistamines and even antipsychotics in an attempt to get some fracking SLEEP for once, weight gain is actually an ME/CFS risk. Especially for that subgroup of us, like me, with more neurological than gut issues.

Personally, I was offered seroquel for insomnia but after hearing about people gaining 30 or 40kg from taking it, I said a hard nope to that option. I also sometimes need to take steroids for asthma, which do cause weight gain. And I was quite surprised when my late psychiatrist said that antihistamines are well known for weight gain and appetite stimulation effects. No-one ever told me that before. And sure enough, I’d been chowing down on the doxylamine, a sleep aid sold over the counter at the chemist as Restavit. No longer, so there’s yet another reason to love my Valdoxan!

Another tiny sparkle in the great pile of COVID shit is that there may be some more money and attention in fatigue research. Unfortunately, a lot of people who got sick back in March are still having symptoms in July. Post-viral fatigue? This is NOT a happy story.

“This is a scary virus in the way it can affect people. There is a significant minority of people who have this ongoing – if you want to call it – syndrome of debilitating symptoms, so we’re sort of looking very closely at that group, both in terms of evaluating their quality of life and mental health fatigue, looking at the neurocognitive function, and then looking immunologically at whether there are any markers that would predict a symptom. So those are devastating symptoms.”

Reduced exercise tolerance was another common symptom, and the chest symptoms differed between patients. “So sometimes the chest heaviness, sometimes heart palpitations, sometimes a bit of difficulty, sort of catching their breath,” he said.

Dore said some people had dismissed these symptoms as being mainly psychologically driven, an ongoing effect of having experienced a new and concerning virus. “It’s been an incredibly anxious, uncertain time for individuals,” he said. “But I have no doubt that this syndrome has triggered, in a proportion of people, an abnormal immune response.”

Well, there’s a very familiar story, complete with those ever present “Some People” dismissing physical symptoms as psychological. But at least the researchers don’t seem to be falling for that one as much as they used to, and I don’t imagine COVID survivors are going to be prescribed CBT and GET to the same extent as in the sorry history of ME/CFS. Perhaps some benefit will spill over to us as this research is more prioritised.

Meanwhile, keep safe!
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Part 2: The Latest Hackery

The main recent hack I have developed is the thermos. In summer I drink cold water, and I have a jug so I don’t have to get up too often. In the cold weather, I drink more tea. Mostly I pick herbal teas, as I don’t want caffeine after lunchtime, and also proper Camellia sinensis tea becomes nasty with excess tannins if steeped too long, so it requires more attention. That’s risky with my routine morning brain fog.

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Anyway, I have this slimline thermos seen above, that is actually not really very good, which curiously makes it ideal. The slim line aspect makes it easy to stand on a coaster nearby. It has a clever space in the lid so you can carry a spare tea bag or leaves with you; this is not relevant to me but it’s a cool feature. It also has a nifty tea brewing insert, a little filter basket that sits at the top.  Sometimes I use that for loose leaf – rooibos mixed with Turkish apple is my blend today. Sometimes I just chuck in a teabag, usually fruity or floral. As a side note, I have gone off licorice tea, which I used to quite like. Seems it’s another aroma that I’ve got weirdly sensitive to since my illness.

The reason it’s not very good is that the top seal has a tendency to come apart. It’s easy enough to put back together, but if you’re not very careful it means the top won’t screw on quite right and it can leak. Not good for carrying round in your backpack, but that’s not relevant to me. Also, unless you are super careful and possibly also carrying a lucky four leafed clover and the moon is in the right quarter, it doesn’t seal enough to keep fully insulated, so your tea cools down. But it’s a slow temperature loss, which means it comes down from boiling to a pleasant drinkable temperature in a few hours. Which is great, because I’ve finished my morning coffee by then and I’m ready to sip my tea over the next few hours.

I have tried looking for my version online, but it seems to have disappeared. Perhaps it’s no longer made? Anyway if you are keen to get one, this model I saw on Amazon looks very similar, except it’s a bit smaller capacity and has a bamboo coating where mine is enamel. Anyway, if you go there you can see the related items and might find something you like. Or you could check out the flasks at T2, most are a useful 500ml capacity.

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(Note: pic is a screenshot, so it has a fake pinterest button under the real one. Huh.)

I’m Probably Not Back, Really.

I was going to write a first of the month post, but then there was this.

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It’s been a while since I posted here, and also a while since I was on my regular Facebook and Ravelry social media. So here is an update on my life, in general and also to say hi to those friends who follow me. Hi! *waves*

There will be talk of knitting and medication and mental health and assorted pastimes and diversions. But I’m not planning to return any time soon yet. I do read texts and FB messenger messages, so if you know me and want to say hi, there’s that. And I check my email every few days.

In summary:

  • Big struggles with mental health
  • Still knitting
  • Was that being sick, or just a flare up?
  • National Theatre rules, OK!
  • Duolingo is my latest thing

The first of those is why I’m avoiding social media. I just can’t with people online right now. It’s been a bad year. It seemed to start well, though there were some early hints that not all was right. (Online shopping sprees are not really my normal.) But then it all went seriously pear-shaped. I developed some sky-high anxiety, and saw not only my GP and counsellor but also a psychiatrist and a community mental health team. I really don’t want to go into too much detail, but it’s been a weird mix of hyper hell and near sedation and killer headaches and determined escapism as we trialled different combos of meds. And then my new psychiatrist died. Weird feeling, that. I liked him, so it’s sad but also I feel oddly let down. Anyway, I don’t think I’ll get another one. Unbelievably expensive and very long waits, and my current med combo seems basically more or less kind of OK for now.

In knitting news, I went and dropped off two shopping bags full of hats, scarves and mitts to Companion House. Some refugees will now be warmer. One bag was made by me over the last year, and one was from donations from friends. Actually nearly all from HH, since I didn’t go online to solicit extras this year. Here is my collection.

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I don’t have my full mojo back yet, but I am still making progress. I’ve finished the body of a jumper for the Bloke, and have made a very simple lace scarf. I’ve also started a simple shawl for very brainless knitting (The Big Blue) and returned to the Vortex. Maybe soon I will try afternoon podcast knitting again. My sound sensitivity is still very bad in the morning, but perhaps, perhaps, perhaps…

Anyway, the drop-off was a nice outing. I had lunch with the Bloke at Two Before Ten in Aranda (excellent steak sandwich!), then we dropped the stuff off to Companion House in Cook. It’s at the far end of the long building from the car park, so a short walk but doable. It was quite a pleasant stroll along the outside of the building, past the park and gardens and blue skies and cool sun. But the next day I started feeling extra sick – full body aches, lots of severe headaches, throat glands up and painful to touch. Ow.

I  was worried. Is this my new normal? Will that tiny amount of exertion now bring on the post-exertional malaise forever? I was actually quite pleased that the Bloke got sick too. Obviously I don’t really want him to be sick, I’m not some heartless monster. But it was just a cold, and it was very reassuring to know that I was probably just ordinarily sick, not in a flare up or a decline.

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Because of that, we moved our regular  night of theatre, friends and delivery food from Friday to Sunday, and both of us were much better by then. So, relief. Just regular sick, not the ME/CFS getting worse.

This regular theatre night has been a great joy.  Since the lockdown ended, our old friends HH (yes, the knitter mentioned above) & MH have been coming to watch the National Theatre At Home program with us. Sometimes the Bloke’s mum joins us if she’s well enough. Luckily I usually feel more alert in the evenings, so it’s a good time for visitors. Also I don’t have to talk much, since we’re mainly watching and eating, so I can manage longer social contact. It’s been really great theatre, wonderful actors including some big stars like Benedict Cumberbatch, Gillian Anderson, Tom Hiddleston and Sian Phillips. They’ve done a lot of gender swapped and colour blind casting in Shakespeare, which has all worked very well. And there have been several racial themed plays, very apt for the times.

Yes, I am aware of the news despite my social media blackout. Current events in BLM and COVID and other political matters have not escaped my attention.  I find that I am OK reading the newspapers online, in snippets between playing games. It’s talking to people about it online that I really can’t take. So, some of my former social media time has been going to reading this non-interactive news, and also some to playing Hero Wars which is kind of D&D themed pokemon. Collect all the heroes, level them up and make them fight!

I recently decided that it was time to do something not quite so mindless. I have often thought that playing mindless games all day is a problem, and I should get up and go do something in between each game session. Sometimes this idea works, and my laundry gets put on, or a meal partly prepared, or at minimum I might just go to the toilet and get a jug of water. But often it doesn’t work because my body decides that standing up is just not going to happen. So I’m now on DuoLingo revising Japanese and Latin. I can do five or ten minutes at a time, and I don’t have to get up off the couch.

I looked at Dutch and Welsh too, but probably two is enough for the moment. I remember being annoyed by the structure last time I tried it, but now it’s working for me. It’s still a bit weird, like why learn only half of a verb conjugation, and just two cases of a noun declension? Why  chuck a kanji like (student) into the mix before you’ve even taught the word or started on katakana? And why would you not start with 一, 二, 三?  But it’s OK, I have other sources and considering it as a revision rather than a learning tool makes it work for me now.

So there you go, that’s what I’ve been up to. I don’t see me returning to social media any time soon, even though I do miss my Ravelry and Facebook friends. You’re in my thoughts. Happy belated Canada Day and early 4th July to those of you from those parts. See you later when I can, and stay safe!

A Not Very Happy Post About Knitting

In my previous post I said that it might do me good to write a knitting post, so here I am starting one straight away. What I said was:

… I feel relieved of a great fear. My knitting mojo seems to have got up and gone, and that has been such an incredibly important therapy for me that to lose it would be utterly  unthinkable. The end of my world. But I am still knitting, even if it’s only one thing, round in a circle. I just can’t face the decisions of what to do next, and the effort to engage with people on Ravelry. So probably this is just stress and it will pass, and I will be OK eventually. Maybe it would help to make a knitting post; it’s been ages.

That was not quite true. I don’t actually feel relieved yet; rather I feel the start of relief. I now have the idea that relief is possible. Perhaps it is even the beginning of the end. But what do I need relief from? A few things.

I have been weirdly afraid of making decisions, and I have several coming up. Where do I separate the yoke for the arms of the Humulus jumper, and what border do I apply to the Vortex shawl?  (That’s the one thing round in a circle that I mentioned above.) How many stitches should the lining for my triangle hat for Margie be? What should I knit next?

Fellow knitters will understand how bad this is when I felt relieved that I had overshot the number of rows I needed to start the Vortex border, and so I had to rip and re-seat some rounds of around 680 stitches each. In fact, I had to do it twice, because I miscounted and had only ripped two rounds when I should have done four. This would normally be a Terrible, Horrible, No Good, Very Bad Thing. But it saved me from having to decide what to do next, and also from having to go find extra yarn for a zillion (ok, 40) new place markers and then actually place them correctly.

I needed to do that because I DID actually decide on the border for the shawl, and do the calculations to get the numbers sorted. And I HAVE actually got the new markers in. So I suppose I am starting to feel a little better about this one. And so I should be able to continue progress. I hope.

I also feel guilty that I haven’t done enough for Companion House, my donation point of choice, even though I did just finish a child’s scarf (or it could be a short scarf for tucking in a coat, not wrapping.) Part of the reason for this is that they usually get my afternoon brainless knitting time: simple scarves, hats, mitts, neck-warmers and infinity scarves (AKA cowls). And I still haven’t got my afternoon knitting time back since my trip away.

I used to listen to podcasts and knit easy stuff from about 4-6pm most days, and now I’m just playing match-3 games. Listening is hard, my concentration is shot to hell, and my sound sensitivity way high. And also I’d have to decide what to do. But surely one day this will pass. I might possibly make a 2 or 3-colour linen stitch scarf, with cute triangular fringed ends. So I have a thought. A thought is better than total mental paralysis. That’s something.

I’m also really, really, really, really tired. I don’t want to go get out the swift and ball winder and wind up yarn for a new project. I don’t want to rummage through my stash looking for good stuff to knit up. Nor do I even want to go find the plastic bag stash for storing my new yarn, and sort through it all, and do all the catalogue data entry that I really want to keep in order. I’d have to go on to Ravelry to do that.

And that leads to another problem, which is me feeling bad about seeing other people do well. I wish them no ill, but I feel so pathetic in comparison. The Ravelry groups and Facebook knitting groups that I used to frequent are full of pictures of things people are making. Complex lace and fancy cables and big blankets and jumpers and nifty crochet (the Virus Shawl is currently very popular)  – and yeah, me, I can knit this thing where I only need to be able to count up to three. As long as I’m careful, and even that is not perfect (see above for needing to rip).

There are so many things I want to learn. I had planned to learn to crochet this year. I want to watch all of the Lucy Neatby videos that I own, which will no doubt teach me a huge amount. (I simply cannot overstate how brilliant an educator she is, and a really nice person, too.) And I bought a book on lace from the Grand Lady of NZ lace herself, Margaret Stove. She even autographed it for me. It’s not a pattern book per se, but rather a master class in the topic, and I had thought of working through it with all the samples and swatches and finally making a eucalyptus themed wrap. I also want to make one of her scarves for my friend Caro who helped me out in Hobart recently. But, well, I can’t count past three. I can’t concentrate.  I can’t watch my videos because they make sounds.

I also want to learn to mend knits, and that is another problem, because I am so very upset about the fact that I have knits that need mending. They took months! I’ve hardly worn them! Is everything I make doomed? What is even the point of knitting at all? Have I wasted the thousands of dollars I’ve spent on fancy yarns and needles and patterns and knitting cruises? (Logically, no, but brain weasels gonna weasel.)

So this is all a bit doom and gloom, and I want to lighten it up with a couple of things that made me feel a tiny bit better. One is this medium article, in which author Gillian Sisley, an introvert with PTSD who normally stays home most of the time anyway, points out that just staying at home as usual is NOT actually as usual.  All the news is draining.  All the worries about friends, loved ones, the world. The constant bombardment with bad news.

We are in survival mode. Survival mode is stocked full of adrenaline and being on high alert and constantly having to look over our shoulders. All of these things demand energy from us, and we only have so much energy in the bank for use every day.

Hmm, I think. I have ME/CFS and therefore am running on super-low energy to start with. A point to ponder.

And therefore, she says:

You don’t have to excel in everything you do right now. It’s frankly unfair and unrealistic to expect that out of yourself. Right now, your main goal is to keep yourself safe and healthy, and to get through the day in one piece.

Mental Health problems are way up everywhere and everyone is on edge. As for me, I am dealing with my regular chronic illness; my extra level of exhaustion from recent travel; some difficult emotional lability that I attribute in part to medication changes and also to the state of the world. And then there’s the extra social isolation from the Great Lockdown (I DO miss knit group and video nights); and a further degree of extra social isolation from my inability to bear my normal social media. That’s a lot. It should be no surprise that my nerves are shot to shit. No, I am not doing well at all. But I am surviving. I am getting through the day in one piece.

Another is this meme that flashed by on facebook:

you are enough

Normally this might seem trite to me, but at the moment it’s helping and I’m not going to quibble. It helps to know that I am not alone in this paralysis, and to remember that it is not a permanent thing. Even if it takes months or years: this too shall pass.

I’m going to try to end this post on a more hopeful note with some knitting pictures that might encourage me. So here are some things.

This is that small scarf for Companion House. I invented the pattern on the go.

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This is the round and round thing, aka Vortex, in its state off the needles waiting for me to rip a couple more rows and replace on the needles. And also detangle the yarn, which was another great decision-postponing activity that I have now done.

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And this is a pile of yarn waiting to be catalogued. Terrible pic, sorry, I’m too tired to get it all out again to take a better one.

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So here’s a few individual pics.

Yarns from NZ companies Ashford, Dyestock (who I am totally in love with), Touch Yarns and Happy-go-Knitty.

 

Mental Health and ME/CFS again

So this Facebook post turned up on my feed, and I reposted it there with “So apparently we all have ME/CFS now”.

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Facebooks’s “embed” function is rubbish, so I had to use a screenshot, but here is the source and the full thing.

Weird and lesser known mental health related problems that some of you may be experiencing for the first time cause of this traumatic situation and not recognizing as mental health symptoms cause normally you’re not so traumatized:

-memory loss and memory issues, especially short term, and a distorted sense of time

-executive dysfunction. If you don’t know the term, I like to think of it as the human version of buffering. It’s when you sit there and think “I need to get up and do the dishes” and then you sit there. And sit there. And sit there. And you think over and over “get up and do the dishes” as hard as you can, but you don’t, your body just doesn’t listen to you, like a slow computer trying over and over to load a page and failing. That’s not laziness, that’s a mental health symptom.

-confusion and brain fog (and even slight dizziness and balance issues as well)

-sleeping too much or too little

-feeling nauseous all the time/not being interested in food even if you’re hungry

-on a similar note “forgetting” to eat or shower or pee, etc. I put it in quotes because what’s really happening isn’t a memory issue: instead, you’re not getting the cues from your body asking for food or water or hygiene or the bathroom. I haven’t quite figured out whether the “I need this” signals aren’t being sent or aren’t being received, although I’d be willing to bet it’s the second, but either way it results in the slightly oversimplified “forgetting” to take care of yourself because you can’t hear your body asking for its basic needs, and you’re instinctively used to the reminders. (It’s a LITTLE like how we don’t have to think about breathing because our bodies naturally remind us every few seconds that we need more air. If somehow those “i need air” signals weren’t getting where they needed to go, we would not be used to consciously thinking about when to breathe.)

-the “bell jar” feeling, or as it’s otherwise known, dissociation, where you feel like somehow there’s glass between you and everything and everyone else in the whole world, and it takes a lot of effort to engage with anything outside yourself. It’s not a sad feeling in and of itself- it has no flavor, it’s just exhausting.

-intrusive thoughts. These are thought loops you get stuck in, usually bad ones, and they’re easy to miss the signs of in traumatic times. If you notice yourself just irresistibly cycling through a sequence of bad thoughts that you don’t want to have, that’s an intrusive thought pattern.

-inability to make decisions, even small ones (resulting in disproportionately intense distress if you try to force yourself)

-shortness of breath and heart palpitations. Yes, really.

-auditory processing issues- staring at someone for a good 10 seconds after they speak just trying to make your brain decipher what they said, or missing what someone said entirely multiple times, even though you could hear them perfectly well, or being unable to separate a conversation you’re having from the background noise of a television in the other room, sometimes to the point where you can’t finish your own sentences because the combination of sounds is distracting you.

-on that subject, also finding sounds** and sensations more annoying and intolerable than usual- forks scraping, plastic bags rustling in the breeze from a fan, birds outside, etc. The way to really recognize this one is that it’s not even just annoyance, it’s an instant knee jerk reaction of distress and rage, and your brain can’t fully function until you make the sound stop somehow. (**interestingly, this category INCLUDES silence) That goes for sensations as well- getting suddenly negatively overwhelmed by being touched, or having tags in your clothes or scratchy fabrics bother you to the point where you can’t think.

I have struggled with/currently do struggle with every single thing on this list, so if any of you are experiencing these things for the first time because your mental health is declining due to the shitty state of the world and the necessity to sit inside with your thoughts, you can come to me and I have tips and coping mechanisms for every single one of them. 💕

It’s really interesting that while this is framed as being about mental health issues in COVID-era, this Blursday the eleventyninth of Maprilay, it actually applies to so many of us with ME/CFS.

The cognitive issues of brain fog and sensory sensitivity are probably the most resonant, but I’ve also written about the executive dysfunction. That one can easily and confusingly wrap into fatigue. It’s not always clear which is which. I am thirsty and there is a glass of water in reach. Am I not reaching out to drink because I’m too tired to raise my arm, or my brain is not sending the “do it” signals to my body?

Oh, and by the way, on that topic of not noticing your body’s signals: it IS actually possible to forget to breathe, though only for a short time. Your diaphragm can say “nope, not moving”, until the signals get much stronger than usual. You can miss three or four breaths – not consciously holding your breath, just not doing it – until you get jolted hard enough with the MUST BREATHE message.

I think the intrusive thoughts are fairly well indicative of mental health problems; as is the experience of sensory issues as inducing rage rather than pain. And not being able to eat even if hungry is probably about high stress, though I admit that sometimes chewing and swallowing seem like a bit of hard work. But the rest is classic ME/CFS cognitive issues. We have sleep disorders. Everything takes energy, and the brain’s activity is no less draining than physical activity – making decisions, auditory processing,  keeping short term memory, interacting with the world in general. Not everyone with ME/CFS has all of these issues all of the time, but I think all of us have several of them a lot of the time.

The other week I wrote about how would I even know if I have COVID, given that I have nearly all of the symptoms nearly all of the time. (My warnings: fever, major chest pain, loss of taste or smell.) So this is kind of the same thing, except that the question is how do I even know if I have a mental illness? (My warnings from here: intrusive rumination, rage from small irritations. There are also others which I won’t note here – too personal even for this very personal blog.)

Note, I don’t say take this as authoritative. It’s just a thing that made me think. I mean, the author probably has no professional mental health credentials: she seems to be a nice young actress from the US east coast. But her vivid descriptions certainly do read as someone with a direct and visceral experience of trauma and/or illness.

I have two other take away messages from this. First, I feel relieved of a great fear. My knitting mojo seems to have got up and gone, and that has been such an incredibly important therapy for me that to lose it would be utterly  unthinkable. The end of my world. But I am still knitting, even if it’s only one thing, round in a circle. I just can’t face the decisions of what to do next, and the effort to engage with people on Ravelry. So probably this is just stress and it will pass, and I will be OK eventually. Maybe it would help to make a knitting post; it’s been ages.

The other effect is that I now have a little more sympathy for those doctors who initially thought ME/CFS was a mental illness. Not the current ones, of course, now that we have the masses and masses of physical evidence of cellular energy malproduction and the measurable effects of post exertional malaise and so on and on. But with this much of our experience shared with stress and anxiety, and also when fatigue and executive dysfunction are connected with depression, you can see how those doctors might once have thought so. As an initial hypothesis. Which did not hold up.

You can also see why ruling out mental health problems as a cause, and also treating them when they are comorbidities, are still important. I mean, it would be SO FREAKING GREAT to have just a mental health problem that I could drug and therapy and exercise and work into submission instead of this eternal shitshow. I’m not saying that to minimise mental illness. I would also gladly swap for HIV, or paraplegia, or a host of other severe conditions.

If you do have a comorbidity with your ME/CFS, wouldn’t you love to lose even just a few symptoms? Having ME/CFS does not make you immune to mental illness.  If anything, all the stuff we have to deal with makes us more vulnerable to mental illness than the average bear. The loneliness, disbelief, grief, loss, and perhaps self-doubt brought by this invisible chronic illness are not exactly the stuff that happiness is made of.

So don’t let the idiots of history hold you back from genuine care. Sometimes psych meds really can help.  I cannot tell you how much I adore my anti-depressant Valdoxan that lets me sleep. SLEEEEEEEP. Sleeping is the best.

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I am Angry

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Being chronically ill messes with your emotions. Usually I’m kind of stuck in grief and sadness, when I’m not enjoying denial. But at the moment I’m bloody furious. Warning: post contains swearing.

It’s not just the idiots out there with their ridiculous COVID denial and conspiracy theories, and worst of all, attacks on the medical people who are fucking well risking their lives to save ours. It’s not just the smug gits who think being stuck at home is just fine and dandy, and we can all learn musical instruments and languages and crafts with our copious free time and energy. It’s not even the politics, with Trump’s daily shitshow and Morrison keeping the refugee concentration camps going with added extra plague and all the rest of the political horror shows around the world.

This time it’s personal. I am, as may handful of regular readers know, dependent on my partner.  Centrelink wouldn’t give me a look-in for the DSP because he exists. When I first “retired” I couldn’t touch my super because I was too young. I don’t get NDIS because it’s been so well known in the ME/CFS community that it’s a horrible impossible process for people with ME/CFS. You have to fight super hard for it – which yeah, that’s so easy with this bone-crushing fatigue. It’s not even listed on their set of possible disabilities on their how to apply page.  Emerge says it’s possible, but read between the lines and it’s clear that it’s incredibly bloody difficult and will take appeals and time and effort that most of us just don’t have the spoons to manage.

But I feel pretty bloody disabled. I laughed so hard when someone who actually KNOWS I’m sick suggested I take a nice little walk to the shops. That’s about 600m, or a 1.2km round trip. Presumably if you do that you’re not just going there and back but also walking around a shop buying things, and then carrying something home. As if. Maybe with a walker and a lot of stops to sit down. Maybe I should get a walker. Or a scooter. I hear the NDIS funds this sort of thing.

Remember this? One study available from the NCBI says:

In a study of several chronic diseases including cancer, stroke, schizophrenia, and renal failure, patients with ME and CFS had the lowest median quality of life. Patients report functional limitations that are as debilitating as, or even more so, than Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease.

Oh, and there’s plenty more. Look at the related links on that study. Remember that commentary on the PACE trial’s bad science.

Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.

Poorer physical function and quality of life than the average 80-year old.  This was really brought home to me on the cruise where I got the priority disabled front seat on the bus, and staggered around consciously missing a few things, and using my seat stick at every chance, while many of my 70+ and 80+ and even 90+ travelling companions were cheerfully zooming about.

I’m too tired to have a shower most days, though it does help if I sit down. I hear the NDIS funds proper shower chairs, but the cheap plastic garden chair is the one for me.

I can’t even cook a bloody pot of pasta. Too much standing up time, or getting up and sitting down again, in that simple process. Fill pot, wait for water to boil, chuck in pasta, wait for 8 or 12 minutes or whatever the packet says, drain pasta. Maybe I should get a wheeled high chair so I can cook sitting down. I hear the NDIS funds this sort of thing.

So yes, I am goddamned disabled, and no, I get nothing except a parking permit which my doctor, bless her, signs for despite government urges to limit these. Maybe one day I’ll need an NDIS number to get one, but not yet.

What DOES want an NDIS number right now is most grocery delivery services. And just like that, my normal routines have stopped working. Harris Farms, which was good for some years, is now offering no delivery slots, not even for 2 or 3 weeks away. They were saying yes they were still delivering to Canberra, so I wasted my time filling a shopping cart and then getting into a lengthy repetitive chat run-around of mixed canned responses and human replies that failed to answer anything, before finally saying there would be more slots in the morning. (Spoiler: there weren’t.)

So I am frickin’ angry and I WANT MY NDIS, but the odds of me getting it are pretty low.

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(source)

 

 

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Snippets in the time of COVID-19

Everybody sensible is self-isolating. Good for them. It’s very important.

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And no, it’s not the same as being house-bound by chronic illness. If you could please stop assuming that all house-bound people can do YouTube exercise videos, learn a musical instrument and catch up on reading Proust in between home schooling the kids, Kondo-ising your house and starting a new permaculture garden, that’d be great. I mean sure, good for you, get on with whatever grabs you, but no, I can’t. Still stuck on the couch over here, waiting for the PEM to lift enough for me to knit a thing with an actual pattern, and maybe listen to a podcast one day soon.

Who knew we spoonies were so fashion forward?

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Source: Tyler Feder 

Other people are coming to understand that grief isn’t just for death. “The loss of normalcy; the fear of economic toll; the loss of connection.” Spoonies have been living with this grief for years. Welcome to our world? Sorry you’re here too. Have a cup of tea and some tissues. Breathe slowly.

And  you know what? There may be more of us in years to come. (Terrible formatting on this article; keep scrolling down after what looks like the end, or search for “Dr Mark Guthridge” to get to the meaty part.)  Post-viral fatigue ending in  ME/CFS has been a thing for SARS as well as many other viruses,and SARS was a kind of coronavirus, and well, it could be bad.

It’s important to note that this is just speculative, because of the lack of data on both coronavirus and ME. But as a comparison, 17% of SARS patients left with severe symptoms after a year is far higher than ME incidence rates in other viral illnesses (9%). And even if you applied the 9% ME rate from other viruses to coronavirus, this could still leave between 216,000 and 1,890,000 million people in the US with ME.

Be kind.  Those of us with invisible illnesses get enough black looks already when we use the disabled car parks. We probably DO need half a dozen toilet rolls and boxes of tissues and tins of baked beans, because we’re not going to have the spoons to go out again for a few weeks. (Note: I said half a dozen, not hundreds. Sensible stocking up is not the same as greedy hoarding.) This is how we normally shop. Also: make up your mind, government advisors! Are we supposed to stock up for a fortnight, or not stay at home for a fortnight?  People in remote areas are having similar problems.

Some shops have decided that disabled people can go shopping at 7am. What? YMMV but I am solidly unconscious then, and semi-comatose and immobile until at least 11am. Many seriously disabled people need carers to get them out of bed, and are probably on fixed schedules where their carer comes at 7.30am or 6.45am or 8.00am and works for two hours, and that is hard to change.

Lots of us can’t even go shopping, and so home delivery is where it’s at! Has been for us for ages, but now there’s both more options and more competition for delivery time slots as formerly healthy shoppers want it too.  Woolworths has a priority assistance option for the disabled and elderly.  Coles says they’re launching something soon. ALDI isn’t. Various small operators run deliveries without criteria; we’ve been using Harris Farms for some time now.

In terms of delivery meals, a lot of new venues are now offering takeaway and delivery: check out feedfeed for what’s in the Canberra region. You probably already know about menulog and deliveroo and ubereats. We mostly stick to menulog as the least bad for the restaurants and workers, but the choice is limited there. If you use the other ones, maybe tip the driver something. There’s also a new thing called bopple, which I know nothing about yet.

Are you worried about delivery packages? Relax, wash your hands, keep social distance and don’t panic.

Nice things to do if you have the spoons (and yes, even lying on the couch watching things takes energy), that aren’t just binging your fave streaming services:

A thousand other options like these have long been available. Maybe finally some of us will finally use some of them, though I’m not convinced. Even for healthy people with no brain fog and cognitive issues,we all know:

nick-5-hours-ago-q-if-someone-from-the-29327972

 

Cruise Tips, or what I was going to write about before this whole COVID thing.

It feels kinda trivial to be discussing this while the world’s on lockdown, but I want to do it before I totally forget.

 

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Source

While I was away I was thinking about travel blog ideas, but at the moment it’s hard to remember them amid all the fuss. My current top tip about travelling with ME/CFS is:

  1. DON’T DO IT!!!

However, if you used to be a keen traveller, it can be hard to let go. You’ve lost so damn much of your life, and maybe, just maybe, you can hang on to a little bit of it. Possibly the psychological benefits will outweigh the physical toll for you. You may not be able to motorcycle in the Himalayas or sail up the Nile or hike the mountains in Japan, but you can probably still sit on a cruise ship and watch the fjords go by.

Other options include long train journeys and resort stays, but a cruise is what I’ve just done. For the record, my ME/CFS puts me at about 25% functionality, not completely housebound and definitely not bedbound. I can go out for a couple of hours a couple of times a week. I can shower unassisted two or three times a week.  I wouldn’t recommend this for anyone worse off than me; I found it a great struggle.

Of course, you still can’t do it until this COVID thing is under control, but one day that will happen. Current top tip for anyone thinking of travelling for pleasure at the moment:

  1. DON’T DO IT!!!

So, anyway,  for your dreams of 2021 or 2022, here are some thoughts on cruises, kinda random and dot pointy because I don’t have the energy for better organisation. This all refers to Holland America line because that’s the only one I’ve been on; I imagine others are similar.

  • A cruise is harder work than you think. It’s really not done to wear your PJs and slippers all day, not even up to breakfast. You will be in public and will need to be more clothed and clean than you can get away with at home.
  • You need a window.  A verandah would be even better, if you can afford it.  Some cruise lines have internal cabins with no natural light or view, which are temptingly very cheap. That’s all very well for the energetic who won’t be back in the cabin all day, but you will. Whether it’s your super-slow morning wake up routine, or your afternoon lie-down, or that day after you really overdid it on that special outing, you WILL be spending time in there. Give yourself something to look at.
  • While you’re booking, check out which side of the boat is best for views, but also try for a cabin that is close to the lift. Ideally the lift that will take you to meals, as you will use that more often than the shows or the gangplanks or the tenders (the ship’s boats used for access to small ports.)
  • Take a moderate size day backpack for the day. You will want to carry more than you expect. Your book or tablet, your craft supplies, your swimming costume, a cardigan-like layer, your camera/phone, meds that you take with meals or emergencies: it all adds up and you don’t want to be walking the length of the ship and up and down the lifts to get things. Those ships are big. Seriously.
  • Don’t bother carrying towels around, though. They will give you dozens.
  • Do your research. Food and drink and entertainment are included, but not ALL food and drink, and what isn’t included can get costly. There are usually packages for you to buy alcohol and soft drinks, but work it out. Personally, I bought none of them. I prefer the free iced tea and lemon squash to the usual soft drinks; I drink alcohol very lightly, and the free filter coffee is acceptable – especially when the baristas are really not up to Australian standards. (This is advice for anyone, not just ME peeps. A couple of my other points are like that too.)
  • You don’t need to take your vegemite or marmite. It’s there for your breakfast toast. It’s OK.
  • It’s worth considering a spa package. Massages are expensive but discounted on port days. I paid for hydro and thermal suite access for the whole trip, which I think may have saved me from too much PEM. Soaking in the strong spa jets, and relaxing on heated lounges, and just being basically alone and quiet.
  • Speaking of being alone and quiet, this is actually quite hard to do. If you have sound sensitivity issues, pack earplugs. There’s chatter and clatter in all the dining venues, ambient music in the spa, soft rock around the pool, and all the bars have their background musics.
  • On my first cruise, which was a long one that went through various temperature zones, I got an unlimited laundry package. That seemed worth it. On this shorter one, I went with the $US20 for all you can stuff in a bag. Be aware it will be hot washed and tumble dried, so not ideal for your preciouses.
  • Take a good basic medical kit, whatever that means for you. That includes all your prescription meds and a doctor’s letter for international travel, of course. But also don’t forget painkillers and vitamins and stuff for wobbly guts (with the rich food I find I need senna rather than immodium, but take both). Consider what you only sometimes need, as well as the every day: support bandages? eyedrops? tinea cream? migraine pills? Seeing the on-board doctor is pricey, and then you have the woes of dealing with travel insurance. If you forget something, then dropping into a local pharmacy on a port day will probably be easier. (Pity about all that walking, but needs must. Too bad if it’s an at-sea day.)
  • Seriously, consider a walker even if you don’t normally use one. You never know if the walk from gang plank to port terminal will be 80m or 800m, or if they will supply you a nice golf cart to ride on. You can be waiting in queues for longer than you can cope to stand. I had a seat-stick, which was OK, but I think if I ever do this again I will get a proper walker. Like this.
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  • You can ask for assisted boarding, which I did with my first cruise. But I found it very annoying waiting ages for a wheelchair when they had already taken my luggage. So I didn’t even ask this time around.
  • You probably don’t need to take hand sanitiser. It is EVERYWHERE.  Even on the cruise I did before coronavirus had ever been heard of, it was all over the place.
  • You can get special diets catered for. Even without asking, there’s always gluten free, sugar free and vegetarian. With prearrangement, you can get pretty much any diet covered.
  • FOMO is a MOFO, but you must be strong and resist. Or at least, mostly resist. I am a bit sad, still, about missing some classical concerts and an acrobat show, and a fancy gala dinner, but it was the wise choice. I am very much more sad about not having the energy for hanging out and bonding more with my travel group. But what can you do?
  • You really don’t have to go on an outing at every port. You can stay on board, or just hop off briefly for some free WiFi in the terminal. (On-board internet is super expensive.) Maybe you can sit on the seafront, buy a real coffee, read a book in the open air, and watch the boats come and go. Save those spoons for the ones that are highest priority!
  • You are really going to have much less free time than you imagine. I packed so many e-books and craft supplies, and ended up crashed face down immobile on my bed instead of using them. I did less knitting than I normally do at home, which is especially impressive since I was actually on a knitting cruise.
  • Don’t try to change locations too often. Do allow yourself some rest space before getting on board and after getting off board, but don’t add any additional destinations. Unless you just need a break from a long flight, and if you must do that then stay somewhere supremely boring like an airport hotel and REST REST REST. I stayed 4 nights in Auckland at the end of my last trip, which would have been about right if not for COVID messing up some of my plans. (Three would have been better. Two not enough.)
  • Late edit: I almost forgot. A US plug converter and a goodly long extension cord to get from desk to bed if you need a TENS or CPAP or heated blanket or whatever medical device. There are very few power points. There were several USB ports, though, so no problems there. Maybe take a small hub, if you have multiple devices you want to charge all at once.
  • Don’t forget to allow a LOT of recovery time when you get home. It’s going to take weeks, at best.

 

 

 

 

COVID-19 and ME

Hello world. I am back!

“From what?”, you may ask, since I’ve been away from blogging for a while. I had a holiday! I went on a cruise, and I thought of so many things to write about travelling with ME, but it’s all been overshadowed by the Corona virus.  Pretty, isn’t it?

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(image source)

I got back after the official quarantine had been declared, so I am not allowed to leave the house for a couple of weeks on penalty of, well, something or other. It varies by state, but somewhere from fifteen to fifty thousand dollars. Not something I want to risk, especially while my super is busy crashing along with the stock market.

A funny thing about this is that I’m not supposed to worry too much, but do go and get tested if I start getting symptoms. (Go? But I’m not supposed to go out. Hmmm.) And what are these symptoms? Well, the government’s  health checker seems to think I should get me to an emergency room right now, but I call bullshit on that. Headaches, general aches and pains, severe fatigue, sore throat, dry cough, feeling hot and cold, shortness of breath… must be a day ending in Y.  (For the record, my cough is not ME/CFS but asthma, which has been much worse since the bushfire smoke hit us so hard in those weeks around Xmas.)

Here’s one survivor’s account of the virus:

“I became very, very fatigued and I had quite intense headaches and a level of chest pain,” she said.

“I felt like I was 80 years old,” the 29-year-old said.

“I struggled to sit up in bed, to get out of bed, to do all the basic things that we probably all take for granted.”

Yup. That’s any old day, apart from the chest pain. So as far as I can tell, the danger signs for me, and other ME peeps, are fever, a cough for no prior known reason, and some solid chest pain. Especially if it comes with really rapid breathing, which means you’re dangerously low on oxygen. Call an ambulance for that one! Anyway, for me, so far, so good.

Of course, the oh-so hilarious joke is “well, what difference does quarantine make to you anyway?” And it’s partly true. It’s been 3 and a half days since I got back and I could barely move for the first couple of them. No energy even for typing and dealing with things on the internet. I’m in brain fog land and forget everything, and I certainly can’t knit anything that needs a pattern. I just started to partially unpack my suitcase yesterday, and today I have managed some money management, a fitbit warranty claim, and this blog. There’s more I need to do, but I think it will have to wait another day.

But it’s also annoying because I am NOT housebound. I am only ALMOST housebound, and that makes a big difference. I recently discovered a great blog with a post about what it’s like to be housebound, Super Pooped, and it’s all so true that I don’t need to reproduce it here, just tell you to go read it. One of her points is that you may appreciate small things more, and that’s been very much the case for me. I had lunch at a cafe! I went to a supermarket! I had a food court lunch after a physio appointment! I bought a pie after a pathology visit! THRILLING, I tell you!

And now I have to go two weeks without those little thrills and it’s annoying. The things I am missing out on are, in chronological order:

  • going to the post office to mail my sister’s birthday card and present.
  • going to cafe lunch knit group
  • maybe going to a board games meetup
  • going to a doctor’s appointment to try to get my meds sorted better (we are having a telephone consult instead)
  • going to another cafe lunch knit group
  • and my niece’s frickin’ WEDDING!

So yeah, quarantine is no fun even when you’re used to being nearly there anyway.

Some of these events have been cancelled anyway, so that’s just my share in the general population’s woes. My niece’s wedding reception is being rescheduled; knit group and other meetups are likely to be off. I’m also lucky that the Bloke got home from his own separate trip before the quarantine, so he can still go out. He’s being cautious and mostly self-isolating anyway, but at least we will not run out of food.

 

 

 

 

 

 

When Getting Better Makes You Feel Worse

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The internet is full of these memes and motivational wallpapers, and it’s bullshit. I have no idea who this person is, but they’re wrong. Not as wrong as the people who say things will get worse before they get better, but still wrong. Things can quite clearly stay the same. You can move sideways as well as forward or back. Or go round in a circle. Left and right, do-si-do, up and down, spinning in place – all are options. The universe is not obliged to provide us with a tidy linear narrative of our lives.

But also, oh yeah, have you considered:

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I had not previously considered this option, though I was aware that it’s the case for mental health. The paradoxical increase of suicides in people starting anti-depressants is a well known case in point. The medication can make people feel just a little better; they have enough energy to actually take action. But at the same time, they don’t feel better enough to not feel suicidal.  Ergo, increased suicide risk.

I’m not talking mental health in my own case, even though I am taking a new antidepressant (Valdoxan). But I am definitely feeling both better AND worse.  It’s not just the side effects that I discussed in my previous post. Yes, sure, I’m often itchy and have pins and needles and that quite annoying ringing in my head, and I’m popping a lot more panadol for the headaches. But that’s sideways, not worse.

What is actually worse, is that I have more energy. This is a complete wait what huh? experience.

jackie-chan-wait-what-meme

I mean it is fucking BRILLIANT.  I love it. I can sleep most nights. I don’t have to stay in bed for ten hours to get seven hours of sleep. I have stood at a kitchen bench chopping up veggies for like five whole minutes! I have read more than a single chapter of a book in one go. I am tolerating daylight better. I have been to as many as three aisles of the supermarket in one outing. Several times I have got up and fetched my own glass of water instead of asking the Bloke to get it for me.  I have even been to a movie!

However. However.

I’m still piecing through this but I think there are two down sides to this. As I mentioned in that previous post, I am feeling a lot more emotionally labile. Politics is the worst for anger, but also the frustration and sadness and grief at my disability are much closer to the surface. The comfortable numbness of denial is less accessible to me. It’s much harder to push it aside with endless match-3 games. I feel twitchy. I want to DO things, but I can’t.

Probably related: I have just spent a quite ridiculous amount on money on internet shopping for craft supplies for crafts that I don’t even do yet. I mean, yes, I really do want to do them, and it’s nice that I’m fantasising more about making things than about doing housework. And in my defence, I’ve been telling myself I’m not allowed to do these things until I get the Xmas prep finished. And the discounts are deep on Black Friday. But still, buying craft supplies should not be a hobby all on its own. It’s expensive and guilt-inducing. I’m stopping now, I swear.

The other negative aspect is that I have lost the sense of my energy envelope. That day I went to a movie? I ALSO did some cooking, some Xmas wrapping, some yoga and some reading. And the previous day I did a similar amount of activity with even more exercise (weights), and I also had a shower, even though I was already feeling pretty low. The post-exertional malaise hit me very hard, on the third day.

Man, it was a doozy. The painful cement head was also ringing; the achey leaden body was also itching.  Serious throat and TMJ pain with tender swollen glands made it hard to eat or drink, and then there was also the nausea. Not fun at all. I was very much too tired to sit up at the table to wrap the last of the Xmas postal things (I do it early because of a family birthday). But at the same time I was alert enough to WANT to do things, and the match-3 games weren’t cutting it as a distraction.  My eyes were itching and I was freezing – which might have been the weather, except that I covered myself in multiple layers of knitwear to no avail. I had a lot of trouble with my knitting because counting to three was hard. I did make a simple dinner, and I’m not sure whether to be proud of my achievement or ashamed of my foolishness.

That was yesterday, and I’m still feeling pretty low today. The worst of it lifted after dinner last night – the glands are back down and the pain levels down, but the fatigue is still very deep. I might be pushing it by writing this post and making dinner, and I really, really need to finish the Xmas wrapping. Maybe I can do it. And maybe I shouldn’t? Or is it OK? I don’t know.

It seems like it’s going to take some experimenting and thinking  to find my new normal. And maybe more effort to NOT do things even if I think I can. That’s going to be a tough one to grapple with.

 

 

 

 

 

 

 

 

 

 

Putting My Money Where My Mouth Is

Warning: violent imagery. And swearing.

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Quite some time ago now, I had a disturbing dream.  In this dream, I was sawing my own legs off, in the certain knowledge that I would be cured by this action. Horrible, yes – but also when I woke up my only emotion was disappointment that actually, no that would not work. Bummer.

This stuck with me as actually a pretty good metaphor for how serious this illness is.  It is serious. I have occasionally thought that if I really did have the choice to have normal energy levels and live with no legs in a wheelchair, I would take that choice in a heartbeat.

…the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.
… Dr William Reeves, CDC (source)

But at the moment I have a much lesser version of that choice. I’ve been trialling a new medication, Valdoxan, an antidepressant that’s supposed to help with sleep. And… I think it’s working? Not perfectly;  I’ve had some bad nights, but also some much better ones, and my energy levels seem a notch higher.

There are some down sides to this drug. It’s not on the PBS so it’s a bit expensive, at $65 a month for the 25mg tabs. And if I increase from 25mg to 50mg, that would probably double. So I can wear that, I am not exactly rich but also not in dire financial straits.  Anyway, I’m totally willing to put my actual money where my mouth is. I have been known to say  I would shank a bitch for a good night’s sleep. (Not my usual language, I hate the misogyny of “bitch”.)  Merely paying out the cash is a done deal.

The physical cost, though, is where it gets trickier. I have to have a series of half a dozen  blood tests to make sure my liver is tolerating it. There may be side effects, and I think I am having some now. I did not want to look too closely at the list initially. in case of nocebo effects, but now I’m into it enough to feel more confident in my assessment.

So, the possible side effects are many and varied. The worst STOP NAO ones are liver problems, and I think I’m OK there. I did have a moment with “unexplained bruising” on my belly but then, it hasn’t recurred and maybe I did just forget bumping into something.

The most common side effect is headaches, and fuck yeah, that’s been happening. I’ve been popping the panadols. Not every day, but a lot. Further items of note in the “common” list are tiredness (how would I even notice?);  sleepiness (wait, isn’t that the point?);  and weight increase (not happening, I’ve been monitoring and thank FUCK for that because every other time I’ve started a new antidepressant it’s been hello to another 10-15 kilos.)

Moving on to the “uncommon” list (one in a hundred), I’ve been having a few of these. Increased pins & needles (mild); ringing in the ears (mild);  pruritis (itichiness, quite a lot);  confusion (or is that just poor sleep?); agitation and iritability.  I’ve been mostly staying off facebook and newspaper sites because the news makes me rageflail. More than normal? Quite possibly. More than warranted, well, that’s another story.

I’ve also been coughing a lot, but although that coincides with this medication trial, it’s probably not related. It’s much more likely to do with air quality, especially small particulates like smoke, affecting my normally dormant asthma. For example, when there’s very dry air and bushfires which apparently aren’t at all related to climate change, or are they ScumMo you disgusting little coal-fondling miniTrump climate denialist muppet? Did I mention  rageflailing?  OK, deep calming breaths. *HACK HACK COUGH COUGHAAAAARRRGGGH*

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OK then. Back to the trade offs. So far, I will trade pain and itching and money for more sleep and more energy.  I am rather concerned about whether I should increase the dose as my GP suggested, mostly because of the itching. Perhaps taking some Telfast or Zyrtec will help, though it might increase the risk of other side effects. Maybe I can find something synergistic to help the sleep without increasing the dose. NSAIDs and melatonin seem the best options there. According to this Canadian drug information site,  they decrease the metabolism, which means it’s in my system longer. Which might help with not being awake from 3-5 am.

My exercise physiologist reminded me of morning light to help sleep, and I’ve started trying that out too.  I used to enjoy it. Ten minutes on the back deck with coffee and a book sounds like it should be a delightful way to start the day, but sadly no longer. The bright daylight is an unpleasant sensory overload, especially if I’ve slept badly. But again, I need to put my money where my mouth is. I can endure it, if it works.