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jeshyr: Blessed are the broken. Harry Potter. (Default)
So I thought I was mostly over the Plaquenil cramps, then yesterday and today are hellish. But maybe it's a virus? Or IBS?

The only way to ever really tell what caused something is hindsight where you can put it in the context of what came before and what came after, sadly (even then it's a guess). When you're in the middle of it it's very "fog of war"-like and confusing and you have no idea what's going on.

I've have had a rough few weeks. My dearly beloved grandmother died and I was too sick to attend the funeral, so felt very alone and left out. Family was lovely - the alone and left out was nobody's fault but the universe's.

On the positive side I have had a very enjoyable time buying Christmas gifts this year. Also bought a new tree and lights and stuff which I put up at the start of November when it arrived, to everybody's amused horror. Christmas lights are fun and will be enjoyed for as long as possible, thank you!

Youch

Nov. 16th, 2016 10:03 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Plaquenil is KICKING MY ASS. Fucking ouch ... the mild-isa nausea 24/7 since I started it is something I could live with, but today I have had a really nasty gut ache all day too. The kind that makes you want to curl up around a pillow and be super grumpy.

It's only day 3, so I'm expecting it'll wear off but yeah ... not fun right now.


In happier news, today's new recipe - Smoky Braised Chicken and Gnocci - was a huge success. A+ will cook again. I added carrots and peas and it was positively delicious. Somewhat plain but that's exactly what I was aiming for since my middle is feeling so fragile.

r
jeshyr: Blessed are the broken. Harry Potter. (Default)
Copy of what I wrote in support group. No spoons to rewrite:

So I've been sort of not properly diagnosed for 20-plus years. By which I mean that (like many of us) I have a list of labels as long as my arms but it doesn't explain everything - I'm sure lots of you know the feeling.

So anyway early this year I got sent to this specialist who looked at my blood tests in a different way to everyone else and said he saw patterns that were significant of autoimmune stuff and he wanted to look into it further. I was quite excited because none of my docs had done that before.

Anyway this guy is good in person but does NOT follow up so I have spent epic amounts of time waiting for him. Finally got fancy blood test results today - nothing.

Fuckit so fucking much.

He wants me to try Plaquenil anyway as a sort of generic autoimmune medication, but had no more ideas or options.

Feeling really let down and also mad with myself for hoping he'd figure out what was going on.

:(
jeshyr: Blessed are the broken. Harry Potter. (Default)
Bloody hell. No wonder I have been feeling kind of despondent and desperate about my headaches. Graph says that migraines are the worst they've been for 18 months :(

It's especially difficult to stick to a restrictive and frustrating diet when it doesn't even feel like it's doing its bloody job.

Bah humbug. I'll feel better in the morning (mornings are always better ... and if they're not then at least the sun is up which helps somehow) but tonight sucks.
jeshyr: Blessed are the broken. Harry Potter. (Default)
I have been frustrated trying to find low histamine recipes because every single recipe in the entire world, I swear, contains tomato or cheese or bacon or onion. Or, you know, almost.

Eventually after much frustrated googling I realised there are other diets which are either subsets or close-sets to low-histamine. Low amine, Failsafe, etc. So here are a bunch of other recipe sites for me to explore when I have the energy to do so.

Read more... )
jeshyr: Blessed are the broken. Harry Potter. (Default)
I have discovered over time two things: That if I stick rigidly to my low-histamine/anti-migraine diet my migraines are greatly reduced, and that if I am in a spot with low migraines I can get away with greatly relaxing the restrictions.

This leads to an up-and-down cycle where I have really bad migraines, stick super well to the restrictions, then after a few weeks (it takes a while to kick in) the migraines reduce and once it feels really stable I relax the restrictions, and then after a while I get a patch of really bad migraines and have to restrict again. The diet is not the only thing that affects my migraines, so they'd be up-and-down even without but this exacerbates it.

It's very frustrating because (a) migraines are not fun, and (b) the restrictions are things I find frustrating and onerous, so I don't want to be stuck with them when it's not absolutely necessary.

Things not to eat for optimum Ricky migraine control -

Super important to avoid: Bacon/ham/any preserved meat, cheese, tomato, chocolate, any cooked meat/fish kept in fridge (i.e.: leftovers).
Uncertain status, best to avoid: Onion, avocado, mushrooms, alcohol, anything fermented, citrus, nuts.

I'm in a patch right now where the migraines are sucky and I am being super restrictive and OMG THIS SUCKS. I know if I have to do it that I can, but I hates it. Food is one of the few things where I can bring change and variety into my life since I can't go places or (mostly) see new people or do many new things ...

So anyway here are some recipes I found in recent searching that seem like they fit (or could be altered to fit):

Crispy sweet potato roast
Cabbage and Italian Sausage Casserole
Garlicky baked fries (tried these today - yummmmmmm)


(I really should look into low FODMAP trial at some point too but at the moment I'm chafing so much at these restrictions the idea of adding to them is making me flail.)

r
jeshyr: Blessed are the broken. Harry Potter. (Default)
You will need: A 6-sided dice.

10am you wake up. Start the day with 10 points.

Roll your dice:
1-3 - you slept fine, no penalties
4 - last night you had a 1 hour migraine, start the day with minus 1 point
5 - Last night you had a 3 hour migraine, minus 2 points
6 - Last night you had a 5+ hour migraine, minus 4 points

Roll your dice again:
1 - it's an unusually good day for no clear reason, 1 extra point
2-4 - regular day
5-6 - bad day, minus 2 points

(You now have between 4-11 points)

Activities you can do during now and 3pm:

Lie in bed, moving only for short bathroom breaks. Boring easily digested meal cut up small for you. No other activities at all. 1 point. You must choose this.

Listen to radio, audiobooks, pat the cat, check Facebook occasionally, eat regular cut-up meals. Normally this is almost always chosen. 1 points.

You might also want to do some of these:

Wipe down with baby wipes and get changed. 1 point.
Watch TV for 1 hour. 1 point.
General web surfing and reading easy stuff all morning. 1 point.
Thirty minutes of studying or hard mental effort like programming or drawing. 1 point.
Sit in recliner for an hour and chat to a friend. 2 points.
Have a lying down bath with lukewarm water, get dry afterwards with help and get dressed. 4 points.
Go out in reclining wheelchair to a doctor’s appointment or down the street to the shops (remember if you are still out seeing the doctor then you can’t nap later). 6 points.

If you need extra points (for example for a doctor’s appointment that can’t be shifted), this is the procedure: Roll your dice -
1-3 - You successfully borrow points from tomorrow. Points come with interest - tomorrow you start with a penalty equal to twice the number you borrowed (e.g. if you borrow 2 points, tomorrow you start with -4).
4 - You successfully borrow points from tomorrow, but there’s no interest. Tomorrow you start with a penalty equal to the number you borrowed (eg if you borrow 2 points, tomorrow you start with -2).
5 - Your point borrowing has failed. You have no additional points today (cancel your appointment), and still start tomorrow with a penalty equal to the number you tried to borrow.
6 - Your point borrowing failed catastrophically (cancel your appointment). No additional points today, and tomorrow your penalty is equal to twice the number you tried to borrow.

Now it's 3pm. Go lie down for your nap. Roll dice to see if your nap is successful:
1 - excellent nap. 1 more point.
2-4 - good nap. No penalty.
5-6 - you can't sleep. -1 points.
If you don't nap at all, -2 points.


Activities you can do during now and 10pm:

Lie in bed, moving only for short bathroom breaks. Boring easily digested meal cut up small for you. No other activities at all. 1 point. You must choose this.

Listen to radio, audiobooks, pat the cat, check Facebook occasionally, eat regular cut-up meals. Normally this is almost always chosen. 1 points.

If you have spare points, you can choose any of the morning’s activities too.

10pm - bedtime.

PS
I spent a fair while doing this, it's a fairly good representation of my actual life just now.
jeshyr: Blessed are the broken. Harry Potter. (Default)
My new trolley arrived yesterday, I'm planning to get tonight's support worker to assemble it - or at least get started.

So I'm turning over in my head to make sure I have all the bits and pieces needed for the assembly and eventually my brain points out the power board is missing.

After poking through my emails I realised that I spent so long talking about it I forgot to actually ORDER the bloody thing.

Oops?

It's ordered now :)
jeshyr: Blessed are the broken. Harry Potter. (Default)
New title idea:

Self-care Without Energy

Like it?

[ETA: "energy-free self care"? ]
jeshyr: Blessed are the broken. Harry Potter. (Default)
Help needed! I've been working on a project around self-care for the severely sick folk like me. Most self-care says stuff like "Take a walk, go see a movie, go to a restaurant, take a swim" or similar stuff - none of which I can do as a bedridden person... so I've been making cards with things I *can* do.

I'd love to start a Facebook page to put up what I've been working on but the project needs a name. Originally in my head I've been saying "Spoonie Self-Care" but I'd like to stay away from the "spoon" idea because not everybody who's chronically its identifies with the spoon theory idea. There's a fairly limited set of options, given that it has to be fairly short and fairly self-evident what it means. I don't want to, for example, call them 'Penguin Cards' because nobody can tell what that means unless they already know.

Current favourite idea is "Low-energy self care", partially because Trump thinks that "low energy" is an insult so it must be good. Any better ideas?
jeshyr: Blessed are the broken. Harry Potter. (Default)
Hanging out for the day I can ask the internets whether 6-way individually switched power boards with 5m cords (and preferably, wide-spacing of plugs) exist, rather than slogging through fifty gazillion google searches ...

On the other hand if you want a 6 way individually switched powerboard or a 6 way powerboard with a 5m lead and wide spacing of plugs I know exactly where they are! I just haven't figured out how to convince those two to have babies ...
jeshyr: Blessed are the broken. Harry Potter. (Default)
Part of what's hard about getting this sick for the second time is that every time I go through getting new assistive technology or using a new way of doing things, it's something I've done before. It feels like having to deal with two sets of emotions - the set that's happening now but also in a way the set that I went through in the early 2000's when this happened.

Read more... )
jeshyr: Blessed are the broken. Harry Potter. (Default)
I'm having a crappy day so I thought I'd share songs for crappy days with you. Unless specified, these are links to YouTube videos so you can enjoy them yourself. They're songs I listen to when I'm feeling particularly hopeless, so they're probably a weird collection but they make me feel better...

Amy's Song, by Cold February (link to my dropbox because I don't think there's a copy of this anywhere on the net and it's not available for purchase anywhere that I can find either)
Always Be Brave, by Steve Schalchlin (link to archive.org)
Brave, by Josh Groban
Brave, by Sara Bareilles
The Coolest Girl, by Darren Criss
The Doctor and I, by John Barrowman
Enough, by The Mrs
Firework, by John Barrowman (because I prefer low pitched voices)
The Greatest Discovery, by Elton John with the MSO
It Gets Better, Broadway Sings for the Trevor Project
Not Alone, by Darren Criss
Proud, by Heather Small
You Are Loved (Don't Give Up), by Josh Groban
Your Song, by Elton John
Beautiful Child, Pauley Perette[*]

Finally, this one is not on this playlist because it sounds wrong, but Got Your Back, by Matt the Electrician is also superawesome and I wish there was a cover that fit in better musically.

I'm going to curl up in bed with a hot pack and a cold pack and 6 pillows and two ankle splints and some codeine now. Send good thoughts!


- Ricky

PS
I'm fine, really, it's just a bad day. No panicking, OK?


[*] This also has Kirsten Vangness in the backing vocals, which makes the bit of my brain that screams "fanfic crossover!!!" very happy. Their characters Garcia and Abby would get on famously.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Dear Dreamers,

Just getting my records in order for doctor visit tomorrow and it turns out I have had fifteen worse-than-average days in a row[*] ... no wonder I am feeling down!! In other ways of looking at the same data, it's halfway through February and I've only had 14 days that *weren't* worse-than-average since Christmas Day.

Read more... )
jeshyr: Blessed are the broken. Harry Potter. (Default)
Thank you very much to everybody for glorious 40th birthday messages and emails and phone calls and such!

Must admit that the prize for best message totally goes to my brother Ptolemy and sis-in-law Cassandra​, who sent a series of photos of my brand new nephew Archer holding penguin-shaped messages for me! I haven't even been well enough to meet Archer yet, so that was super extra special :)

Unfortunately my health has been pretty crappy since Christmas so I've been mostly resting and resting and watching crappy TV and resting and looking at silly cat pictures and resting some more ... BORING! We have reinstated some dropped medications though so hopefully that will help me pick up. Unpredictability is hard to deal with. Sorry for all the people whose events I've had to cancel at the last minute.

Health aside, things are going well. Urdu study preceeds apace (165 words at last count) and I have been making the most of time spent staring out the window by participating in the Bathing Birds​ summer survey. In the bits of time where I've felt better, Aama​ and I have been decluttering our little flat and rearranging the living room so everything looks roomy and neat which is nice when I spend all day here.

Life is good.

PS
The photo below is a bowl of yummy chocolate custard with whipped cream and almonds on top. Anne​ brought it over to have with a very enjoyable birthday dinner last night. Thank you Annie!!





Cheers,
Ricky
jeshyr: Blessed are the broken. Harry Potter. (Default)
Four year old-ish kid holding Mum's hand, visibly shy but wanting to ask me something. We're waiting for the pedestrian lights to cross so I said "hi". She's looking with big eyes at my large reclining power wheelchair, as most kids do.

Eventually she plucks up the courage to speak up, "Is that your iPhone?" pointing to the iPhone that sits on the mount so it's right near my hand and clearly visible, "It's RIGHT THERE for you!"

We had a lovely conversation about how I could watch movies on the bus and everything.

Kids are so awesome!


r

Urdu

Jan. 22nd, 2015 11:13 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
I have been learning Urdu since about the middle of November.

I have more-or-less learned the 40-ish letters of the alphabet and the letter name, written shape, and sound of each letter (so each of those cards has 3 "sides"). According to my flashcard-ish thing (Anki) I also have about 150 other "things" which are mostly words but some are sentence structure flashcards too, and each of those cards has a back and a front. So say 100-150 words. You can say a surprising amount with 150 words!

Interesting framing-related thing I noticed this week:

When I think about Urdu learning in terms of "I must memorise these words/grammar structures/spellings" and focus on the outcomes, it's quite stressful. On days when my brain is uncooperative and I have forgotten everything it's even more stressful.

When I think about it as "I must expose my brain to these words/grammar structures/spellings so I can learn" and focus only on the effort, it's not at all stressful and becomes highly enjoyable. Even on days when I have forgotten everything it's not too bad, the thing that's "my job" is only the effort (and I can control that) - trusting that the outcome will follow if I put the effort in consistently[*].

It makes me wonder how much the inevitable outcome focus in schools screws up learners in those environments, especially when their outcomes are not what they wanted. I was lucky when I was in academic settings that my brain worked so well I almost never felt that sort of stress.

Also, of course, I have the HUGE advantage of living with a fluent speaker and having a second fluent speaker with my every day, so I can ask them things as they pop up. Given the number of things I've asked, I'm wondering how anybody manages without!


[*] I am separately learning about adult language learning, to make sure I am doing the most efficient exposing-type-thingies that we know of at the moment, but that doesn't even count as "effort" for my brain because I adore popular science and there are a ton of good evidence-based books about adult language learning.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Bag not found - have assumed it's a lost cause and won't be :(

On the plus side, found an $8 replacement at the op shop which will do for now. Maybe I can adapt it to suit better...

Replaced some lost stuff - there goes the "rainy day" fund for this year.



This morning I have sorted through and filed all the crap in my physical "in" tray. Paid all the outstanding bills I could. Noted everything down in my accounting thingy. Made some phone calls. Discovered some important paperwork that was due a month ago (oops...) in said tray. My productivity is epic!


Another epic thing has been my toilet this past week. It got itself thoroughly blocked with what turned out to be zillions of tiny matted tree roots and the entire bathroom got covered in backed-up raw sewerage which was really unpleasant. So far we're at 4 plumbing visits and counting ... there's only a tiny leak left though, it's 99.99% fixed. One of those rare times I am grateful I don't own this house so the plumbing bills are not my problem!
jeshyr: Blessed are the broken. Harry Potter. (Default)
Lost bag searched for but not found. Reported to police lost&found and spoke to a bunch of shopkeepers but I'm thinking if it hasn't turned up it's not very likely to now ...

Also realised that all the Christmas cards i'd drawn were in there, as well as my fancy $100 bluetooth earset DAMMIT.

Oops ...

Dec. 5th, 2014 10:51 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
I lost my bag! WOE!

My awesome loved-to-bits custom-made-just-for-me messenger bag which is juuuuust the right size to hold my immense amount of crap AND fit on my wheelchair footplate under my shins where I need something to rest them on. The bag I carry everywhere and which contained, amongst other things, the oversized pencilcase thingy with all the meds I usually carry around with me.

On the plus side, it DEFINITELY has my name, address, and phone number in it if anybody bothers to look at the paperwork and it did not have my wallet in it at the time. Pretty much all it had was a bunch of crochet, miscellaneous paperwork and my meds (none of which are fun to abuse) - nothing worth stealing except the bag itself. So hopefully somebody will hand it in somewhere.

On the negative side I've had somebody look (almost) everywhere it may have been and phoned the cops and nobody's seen it yet ...

Oh and it was almost certainly lost on my local shopping strip so if I can find some energy tomorrow I'll trip down there and word up all the shopkeepers in the area. Most of them know me - there aren't too many loud women in reclining wheelchairs around who chat to everybody - so that will help at least.

Plesae come home, oh much loved bag ... I miss you!

---

The bag fell off my wheelchair on the way to the bike shop where the nice bike guys installed the new tyres on my manual chair wheels. So at least that got done? And I was able to grab the new Urdu book from the library while the tyre guys where doing their thing. So the day wasn't a total loss ... but ARGH.

r

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jeshyr: Blessed are the broken. Harry Potter. (Default)
Ricky Buchanan

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