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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Not Me

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.

 

 

 

I Have No Idea What I’m Doing

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Really. No idea. And it’s totally not my style. But I’m doing it anyway.  It kind of kicked off from here but it’s a thing I’ve been considering on and off for a while. So anyway, I’m going to take all of these and more in May. Since I have no idea what I’m doing, I’m just going to take one of each pill, or the recommended dosage on the label. Whatever.

So here it is. The list is:

  • Curcumin
  • Probiotics
  • Co-enzyme Q10
  • Acetyl L-Carnitine
  • Vitamin C
  • Vitamin D
  • Iron
  • B6, Zinc & Magnesium
  • Vitamin B12
  • Folic Acid (B9)
  • Vitamin B complex
  • L-tryptophan
  • Huperzine A
  • Fish Oil

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Sample size N=1. No control. Subjective assessment only. Popping more than a dozen pills a day, and that’s not even counting prescriptions and all the stuff I use to try to sleep better. What could possibly go wrong? Down the hatch!

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Frankly, I expect I’m just wasting my money. But people do report improvements with some of these, and maybe I might get lucky.  My plan is one full month’s trial, and if it doesn’t make any difference then screw it. I feel kind of stupid doing this, but imagine if some of it works and I never tried it?  What the hell.

On Taking Supplements

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I’m not a fan of alternative medicine. I don’t want snake oil. I get my nutrients from food, and since I eat a lot of fruit and veg I generally think vitamins are a big fat waste of money. In the case of the water soluble ones, it’s quite literally pissing money away. I except vitamin D and iron, since I have had medically diagnosed deficiencies in both. The iron is odd, since I do eat red meat, but the blood tests are clear.

But ME/CFS does weird things to you. Like, when I read a headline saying Herbal Drug Kratom Linked to Almost 100 Overdose Deaths, the CDC Reports, I’m partly drawn in by smug confirmation bias, but I leave going “how can I buy this stuff?”  The piece explains that it’s an opioid-alike substance, and most of the deaths are in people with prior form for opioid addictions, so I don’t see myself at much risk, and if it would help me to a good night’s sleep I would fuckin’ shank a bitch.

I’m not actually going to seek that one out, but I will try out other alternative medicines. Even though ingesting uncontrolled quantities of unknown chemicals of unknown activity  in unknown dosages sounds like a bad idea in general.  Take this example: 4 Natural Supplements That Are As Powerful as Drugs. As powerful as drugs? Natural or not, they ARE drugs – just not refined, measured and fully clinically tested.

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But hey, that curcurmin sounds good. Maybe I should try it. And while I’m shopping, how about that probiotic sample pack and oh look, a sleep aid I haven’t yet tried. And did you see this jilungin bush herbal tea for sleep? Bring it on! What have I got to lose? (Yes, I know.)

It’s clear that ME/CFS comes with a lot of nutrient deficiencies. What is not clear, is why that is so. Is it cause or effect or coincidence? In the case of vitamin D, it’s definitely an effect: I don’t get out much. No morning cycle rides to work; no long walks on weekends, no bush camping trips, means not much sunshine to make the vitamin D. But the others? And even if it is an effect, will supplementing do any good? Who knows?

If only there were a few decades worth of  research and clinical trials behind me, instead of a few decades of denial and neglect of ME/CFS patients. But this is not so. We are currently stuck with no treatment while the basic research is just beginning. We’re left with our social media anecdata, and Dr Google, and personal uncontrolled experiments with n=1.

I was considering trying the whole shebang for a while. L-carnitine and CoQ10 and vitamins and minerals galore. It could be an expensive exercise, but for a couple of months trial it could be worth it. I decided not to do that when I got pneumonia, as any improvements could be confounded with the recovery. But by now I think I’m as recovered as I’m going to be – which is not as much as I’d like to be; I think I have lost ground. But anyway, perhaps next month I’ll give it try.

 

 

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More Linky Oddments

Hanging out in the tabs at the moment, there is the usual collection of things that I think “Hey! This could be an interesting blog post” and then never get around to actually making a full post about. So here’s the short stuff.

British group ME Action has a post on how GET/CBT therapy is harming people with ME/CFS. It’s the results of a large study of patients in the UK, and almost everyone who tried it found it to be a failure. That’s thousands of people harmed, and all of us in danger until this terrible idea is defeated.

Another British piece, from the Royal College of Physicians, discusses how the most important thing for many patients is having a doctor who believes their disease is real – and how many doctors have no idea. A doctor who fell ill writes:

I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).

 

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition …

And there’s a big piece in Medline (subscription required, but it’s free) on treatable aspects of ME/CFS. It’s mostly focussed on the orthostatic intolerance, which I do have, but the treatments are mostly about increasing blood pressure and volume. Since I have some mild hypertension this probably isn’t helpful for me. Damn. There’s some interesting stuff there on how our brains & bodies don’t respond to activity the same way as normal people, so it was still worth reading.

People with fibromyalgia, a common comorbidity with ME/CFS that I luckily do not have, might perhaps be treatable, and even cheaply! It’s possible that an old anti-TB vaccine may have curative effects.

Fellow Chronic Illness blogger Siobhan, also an Australian, has some tips on travelling with ME/CFS. I have used many of these ideas in the past. Another tip that is just now taking off is the Sunflower Lanyard, a signal to airport staff that you have a hidden disability and might need assistance. Link is to Heathrow, but it’s happening in other parts of the world too, and even spreading from airports to shops like Sainsbury’s.

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Ars Technica has an interesting post on the physics of knitting.  Surprisingly, the material behaviour of knitted fabric hasn’t been much studied yet.

Also knitting,  I have this mitred diamond jacket pattern, not because I want make it, but because I was trying to find how to do a triangle.

 

I Made A Thing!

I am very pleased with my Thing.  I’m calling it a Crazy Mermaid, because the pattern base is Nereid, but I changed it in many ways. And also it’s a small tribute to an internet acquaintance who died recently with a brain tumour. In memory of Crazy Fish Lady,  Emma of Canada, I present:

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I really like it. The colour scheme, the way it twists and curls, the neat edging that makes it easy to hide all the ends. It’s a very pleasing piece. It’s made of two different yak blends, one with linen and one with bamboo. The bamboo is ultra-soft, and the linen is a tad scratchy but should soften with wearing and washing. Both yarns were bought locally, from I Wool Knit in Bungendore, for my 5 year “Knitiversary“. The owner, Barbara Gatzen,  mostly sells online, but does local pickup by appointment. Bungendore is a nice outing – not too far to drive for a bit of lunch and some shopping. (Though she’s moving to Wamboin soon.)

Although I wasn’t particularly close to Emma, I felt considerable good will towards her. She was a Ravelry friend, a regular participant in my favourite group, and I recall last year searching for a crazy fish themed cake gif for her birthday. I also remember her as cheerful and positive, even just before she went in for surgery. Many others were closer – especially the dog lovers, which I am not. She was known for her pictures of doggo Chai in hand knit jumpers. Well, Emma, this one is for you and the amazing Monthly Thread community. So long, and thanks for all the fish!

 

 

 

 

 

I don’t want to write this post.

I don’t want to blog about being sick.

I don’t want to finish off my half-dozen unfinished posts about ME/CFS and being sick.

I don’t want to participate in the Facebook ME/CFS forums, about people coping with being sick, and not wanting to be sick, and being desperate about being sick.

I don’t want to read books about being sick.

I don’t want to read books about better coping with being sick.

I don’t want to read websites about other people being sick, and coping with being sick and not wanting to be sick..

I don’t want to watch documentaries about being sick.

I don’t want to do online reading about the latest updates in ME/CFS research.

I don’t want to THINK about being sick.

DON”T WANNA!

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But there’s nothing to do but play the hand that’s been dealt.

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