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.

 

 

Denial Is a Great Place to Live

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Step aboard your felucca and drift away, watching the desert and the temples and pyramids and palm trees. It’s delightful: warm and sunny and colourful. Though you do need to watch out for crocodiles.

The thing is, I don’t want to spend all my time being sick. It’s onerous and boring and disabling and who wants to live like that? I’d rather be a person who knits and reads and plays games and learns languages and watches interesting media and  lunches with friends. Which I am. It’s quite a nice life if you allow it to be.

It can also be an unpleasant life, if I allow it to be. I can look at the beautiful blue sky and think how lovely it would be to go for a walk or a bike ride, but I can’t. Or I could just do some laundry, but it’s exhausting hanging it out. Maybe I could go to the pub and listen to some live music (I’m fond of blues) but I’d run out of spoons just getting dressed and out, and even if I could manage that, I’d very soon be in pain from sound sensitivity. Maybe I could sit outside in the sunshine and drink a beer and read a book, but the bright light can also hurt and the brain fog won’t let me concentrate for long. and my alcohol tolerance is super low these days.

Thinking about all the things I can’t do is a sure route to misery. Sometimes they jump out at me and remind me, and I can’t help but grieve for my old life. Choral music is the worst, but there’s also baking and motorcycling and travel and gardening and even work. A friend offered me some tomato seedlings the other day, and I had to say no because taking care of the garden is beyond my capacity now. I saw my old boss at a cafe and it was hard to restrain the tears.

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There are crocodiles lurking in my happy denial, and sometimes they can bite me in the arse. Reminders of losses are only one kind. The other kind is problematic behaviour patterns. For example, I’ve always been a bit of a procrastinator, but I mostly coped. Now I find myself constantly thinking “I’ll do X when I feel better later today, or tomorrow”.  But I am not going to feel better later today, or tomorrow. Or rather, maybe I will but it will be marginal at best. I have better and worse days, but never actual good days.

So that’s a thing I need to tackle. I have several new technical things to deal with. I got a new computer, new headphones, a powerbank and a mini yarn spinning device, and I need to set up configure, charge, check and learn how to use them all. And also see if I can revive my old computer and reorganise files (patterns, photos and books). And I am totally procrastinating on all of them “until I feel up to it”. Which is not going to happen, so how? I need to work this one out. I have some ideas about notebooks and journals but catching that croc is currently a work in progress.

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I Feel I Have a Duty to Share This

 

This is Dr Sarah Myhill in a ten minute video explaining what is wrong with the PACE trial. Seriously, WHY is this still a thing? Currently, treatment guidelines in the UK and Australia and some parts of Europe rest on this utterly discredited so-called study. It’s nonsense. ME/CFS is not a psychological disorder, and it’s not cured by exercise.

If it were, I’d be well by now. I did a reconditioning program the year after I was first sick, I went to the gym. I did lots of stuff: aerobic exercise as well as weights and stretching. And I got worse, and worse.  It’s all very well getting out of breath and exhausted by having a shower when you’re recovering from a major chest infection. But for how many years is that supposed to persist? Isn’t doing things daily supposed to make them easier? I never got better enough to find showers easy again, and now I’m definitely too sick for daily showers.

It seems that everyone who investigates ME/CFS finds a biological phenomenon. Like, Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases. Or perhaps, Mitochondrial alterations in NK lymphocytes from ME/CFS patients  Or how about A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  I could go on but I’d just be copying & pasting article titles forever.

There is so much wonderful research coming out all over the world now. Griffith and Melbourne Universities in Australia. Many in the US, including Stanford. So many places, it’s hard to keep up – especially when you don’t want to spend all your time thinking about being sick. The summaries from Science For ME are pretty useful for the occasional catch-up.  Here’s a pdf with some more. So much good stuff.

And also bad stuff. Science for ME reports on these too, and also the Virology Blog’s ME/CFS section is routinely updated with the bad news. That one is the home of David Tuller, investigative reporter and one of the initial PACE trial critics. And there has been recent Bad Stuff in the media, with the PACE trial authors claiming they’re being harassed by critics. A little hint, guys: science is SUPPOSED to stand up to scrutiny. It’s not like the critics are mad anti-vaxxers and science denialists: instead many are respected statisticians from reputable institutions.

So why does this crappy, statistically invalid, insurance company funded trial keep being used?  Sadly, I suspect there’s a lot of big egos involved, and that may well be more powerful even than the various vested interests of government and insurance companies denying benefits. Let’s hope we can proceed faster than Planck cynically suggested.

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The Bloke is Coming Home Early

Which is good news and bad news.

The good:

He’ll be home! I have missed him! No more filthy hermiting!

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The bad:

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He’s coming back early because he hurt his foot, so that’s not fun for him.

I haven’t got round to my planned Massive Indian Feast For Days, and I was looking forward to that.

The house is a mess. I mean, I know he’ll be expecting it, and what would you expect anyway given ME/CFS and a broken dishwasher? But I had secret hopes of tidying some stuff up before he got back.

In Other News:

Yeah, the dishwasher died, so that took some serious spoons to deal with. Diagnoses, attempted fixes. getting a repair guy in, finding out it’s cheaper and quicker to replace than fix, searching Choice for the good ones and Appliances Online to buy, uninstalling the old one, having an extra shower because I got dirty dishwater all over me, getting the new one delivered and installed… Luckily a friend helped with the installation, but even so, SO MUCH EFFORT.

Also, I had planned to write a food post about what I’ve been “cooking” and eating, but I probably won’t do a dedicated one now. There are basically three things.

Food From The Freezer:  the Bloke and I have been freezing a lot of things over the last few months. I’ve had pasta and sauce, baked lamb with greens, chilli con carne, risotto, mac & cheese, and there’s still heaps left. Mostly pretty healthy stuff.

Super Easy Basics: shove stuff in oven, wait for it to be done, eat over several days. I made a cauliflower cheese by baking a cauli with a jar of cheese sauce and some extra cheese; I baked some sausages; and I made eggplant “parmi” with eggplant baked with a jar of arrabiata sauce and more cheese.  And then they get varied – sausage and sauerkraut in bread, chopped sausage and eggplant with pasta, cauli cheese with tuna and pasta and peas, that sort of thing.

Home Delivery: Once I ordered Chinese food, and had that for days in various combinations. And once I got Turkish when friends were round and also had meals from that for several days. The trick is to mix and match. Sweet & Sour pork one night; wasabi beef with eggplant another night; Turkish bread sausage sandwich; pastirma and eggplant with rice; lamb kebab and cauli cheese. No two meals the same.

 

 

 

 

 

 

Schedules and Decisions

 

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Shortly before he left, the Bloke said to me “It’s hard to fit things in around your schedule”. I was initially confused, because my schedule is pretty open. I don’t have a job, I don’t have much in the way of regular commitments, nothing gets in the way of doing whatever I want. Except that pesky ME/CFS, so actually he’s totally right. It IS hard to schedule around me.

I have a daily schedule and a weekly one. On a daily basis, I’m mostly alert and able to socialise around 11am-3pm and 7pm-9pm. So lunch or dinner engagements are possible – but definitely not both. If I’ve been out once, that’s it for me. And afternoon tea and pre-dinner drinks are not a thing I can handle any more.

So you’d think scheduling a dinner out might not be too hard, but there’s also the weekly schedule. I try pretty hard not to go out two days in a row. I have knit group lunch on Wednesdays, so that makes Tuesday and Thursday generally rest days. And then lots of restaurants are closed on Monday, and too crowded and noisy on Friday and Saturday, so  there’s not much option left. Especially not if I  take up going to a Sunday afternoon meetup group. Yeah. Count that out: there are no days left.

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I did want to have a nice dinner out with the Bloke before he left, so I booked us into Lilotang on a Thursday evening. That went very well, it was nice and quiet and absolutely delicious. Luckily I was also able to make knit group the previous day. You see, I take a sleeping pill (Zopiclone) once or twice a week, usually before knit group, to make sure I’m OK the next day. But I can’t take it too often or it will stop working.

The ME/CFS insomnia and unrefreshing sleep can really wipe me out,  like the other night when I had maybe five hours sleep and then also had to clean up cat barf and half a rat before I’d even had coffee. On days like that, all plans go out of the window and it’s  cancel all outside appointments, in favour of the couch and the Candy Crush games all day. But sleep is a crapshoot, as is my energy level, and some days I will be OK-ish without medication. That’s what happened the week before the Bloke left: I prioritised dinner with him so I took a pill on Wednesday night. But I got lucky and slept OK on Tuesday night, too, so I did make it to knit group.

And that’s how the schedule works. Decide on a thing or two to prioritise, rest beforehand, take the pill, and do that thing. Everything else is optional, and maybe I’ll get lucky and maybe I won’t.

 

One Week Down, One Month to go

I aten’t dead.  I am not a filthy hermit. This is not a picture of me in the kitchen, I swear.

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It’s been a tough week since the Bloke left, and the following month is likely to be even rougher, but I am going to make it.  I’m fine. This is also not me.

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Though to be honest, it’s a pretty close call. The goals of not being filthy and not being a hermit can conflict, and while I have had enough showers to go out, the kitchen is not exactly pristine. I’m not used to living on my own, and it’s kind of weird the way nothing cleans itself up. Everything is exactly as I left it last time, though possibly a bit more covered in cat fur.

I’ve been out several times: a knit group, a boardgames meetup, the chemist, and yesterday I visited Companion House to drop off some donations.  I don’t usually leave the house four times in a week, but it was all either good or essential. I loved the boardgames meetup, where I spent a good three hours playing games with friendly strangers and did not even once talk about being sick. I crashed like mad when I got home, and was a write-off the next day too, but WORTH IT.

I also had a massage with an in-home service, and that was lovely. It’s been ages. It also left me super drained for the rest of the day, which was a bit surprising.

As well as making the effort to go out more, my step count is up just from the small things. Just the effort of daily living is exhausting. No-one will fetch me a jug of water, or take my dinner plate out to the kitchen, or go to the chemist for my scripts, or hang out my laundry for me. Or even just turn on the light so I’m not sitting on the couch playing games alone in the dark –  fate only narrowly averted a couple of times this week so far.

I think I need to take it a bit easier in the coming weeks, but that’s also hard because my to do list is ever growing. I have had a couple of kind friends offer to help, and I probably should take them up on it, but I don’t quite know how. So many little bitty jobs to do, and some I must do myself because no-one can sort out my clothes for me.

I have made a long list and am checking things off, and there are a couple of things I feel  I could ask for. Folding the laundry, maybe. Winding some yarn. But can I really ask someone to clean my kitchen? It seems wrong. It’s my mess. I should clean it myself, or at least pay someone. And even if someone offers, do I then have to be social? Because some days I don’t have spoons for that. Can I be OK enough to be social and yet at the same time, not OK enough to do things myself? Asking for help is hard and confusing.

At least I’m eating well. There were leftovers for a few days, and some freezer meals, and I even made a fake eggplant parmigiana (bake sliced eggplant with a jar of pasta sauce over the top, add grated cheese.)  I’m quietly proud that I managed to go over a full week before ordering delivery. Now the fridge is well-stocked with Chinese leftovers.  I hadn’t actually planned to do that for a few days yet, but then I crashed too hard after dropping in to Companion House, and sweet & sour pork was calling my name. And I think that wasabi beef will go quite well with the leftover parmigiana. Call it fusion and it’s all good.

 

 

 

 

 

Well, I’m On My Own

He’s Off

The Bloke has set off on a five week trip west, and I’m on my own. It’s going to be a challenge, but I have sworn a solemn oath not to become a hermit living in filth.

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This is not going to be entirely easy, but I have started by booking myself in for some social events, and I even had a shower last night. So, off to a good start.

The Bloke has left the house clean. He also changed the sheets, took out the bins a day early, cooked dinner last night, and bought me some flowers. When he left, he reminded me that the freezer is full of food. He is a Good Bloke and I will miss him. He has threatened to send me endless pictures of red dirt, and I have threatened to retaliate with endless photos of knitting,

I’ve decided to blog some more while he’s gone, since there will be something a bit more interesting to talk about than just “oh I’m sick. still. Yup, still sick. Oh wha a surprise, I’m sick”. How will I cope on my own for this long?

I hadn’t entirely given up, just felt that I couldn’t be bothered. So here’s a quick catch-up.

 

What I Would Have Blogged About if I had been Blogging The Last Two Months

May was ME/CFS awareness month, which included ME/CFS awareness week and ME/CFS awareness day. So obviously I should have been blogging. How very remiss of me. I did, however, post a bunch of stuff to facebook so duty done.

Also coming to notice in May was Jen Brea’s announcement that she has been cured. That was huge news. It seems she had some sort of spinal cord compression that could be fixed by surgery – and it’s possible that a subset of ME/CFS sufferers share this. The surgery is apparently highly specialised and quite dangerous, so we’re not all rushing off immediately.

In June I would have posted the results of my supplement trial, which was basically nope, no improvement. Except I’ve now added a full B complex to my regulars, since it seemed I was lacking.  (TMI evidence: it took me a week to start peeing fluoro yellow. I must have needed it.)

Apart from that and the horrible election, it was just another month with just another bunch of articles telling us that ME/CFS is real. Metabolic markers. Scientific evidence of exercise intolerance. Blah blah blah. Does this happen for any other illness? No wonder I like to live in denial.