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My Day ...

Jan. 20th, 2017 03:05 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
This photo is emblematic of my day, basically ...

[Photo shows butter container that fell out of my pantry. The lid fell off and, of course, both the lid and the container landed upside down on the grubby lino floor. Butter is visible leaking around the edges of the container and on the floor beside it.]

It was, of course, the only remaining tub of butter we have.
jeshyr: Flying penguin (Penguin Flying)
On the 18th of January 1997 I wrote my first ever blog entry. This was it:

"Dammit, I'm too sick to write any more of this now. I wanted to start, but it'll have to be later on or tomorrow. I will though. I promised myself."


It seems pretty apt, therefore, that I've been too tired to write anything much for today either. The more things change the more they stay the same!

I'm listed on the Online Diary History Project as the 21st internet blogger. I started my blog on Tertius.net.au on a hand-coded site (later I wrote my own scripts to automate some of it), then on LiveJournal, then I moved to Dreamwidth where I am still very happy.

I was going to try to write some things that have changed in 20 years but hell ... I was 21 and now I'm 41 - everything has changed! At that point I'd only been sick just over two years so all my doctors - and me - fully expected that I'd get over things and get back to my "real" life. That being sick was somehow an aberration and in 20 years I'd look back at that very odd time I spent a few years unable to do stuff. Now ... well, I don't rule out the possibility that either I might spontaneously recover or that medicine might catch up enough find a way to make me function again ... but if either of those things happen I'd class them under "happy miracle". I think the most likely possibility is that I'll be bedridden for the rest of my life.

And ... well, I don't want to be bedridden of course. I don't want to be sick at all. I don't want to hurt or feel crappy or miss out on stuff. But on another level it's OK, I can do this. I've done this for 20 years, and it bets the shit out of being dead! I've had a lot of friends die over the past 20 years, people who I'll never get to talk to or see or hug again, and it really makes me appreciate having the chance to be alive. If the only way I get to be alive is to be bedridden, then I'll do it. If nothing else I've been a science fiction fan all my life - I always want to find out what happens next.

Here's to several more sets of 20 years :)

Love you all,
r

PS
There is one thing I'm going to change: I'll be posting things mostly friends-only after this I think. So if you're reading this and I haven't given you access either on DW or LiveJournal then let me know and I'll rectify that.
jeshyr: Blessed are the broken. Harry Potter. (Default)
(This is a gentle spoof on those "Things Not To Say To Wheelchair User" type articles)

1. Can I loan you my kittens for a day?
2. Would you like more Diet Coke?
3. Can I buy you a house?
4. Will you accept this pile of money I have lying around ...
5. Would you like to go to Hogwarts?
jeshyr: Blessed are the broken. Harry Potter. (Default)
Having got to a phase in health where I'm only managing a bath every 3-4 weeks now, my hair was really REALLY not coping. Even with all my (extensive) no-poo techniques it only lasts 2 weeks between washes before it starts to be untenably icky. So a few days ago one of my awesome support workers clipped it for me ... tada:

Ricky with bald head, wearing blue T-shirt and lying on a blue sheet

I did not mean to colour-coordinate with my own sheets, BTW. That's an unexpected bonus ;)

I'm still peeved that stupid illness takes away the choice of what I do with my hair, but I also don't mind being bald, so it kind of balances out. It's definitely something I'd choose sometimes of my own accord, I just wish it was my choice.

Other than that things have been very quiet. Lots of sleeping. Lots of talking radio and audiobooks and podcasts. Oh, that reminds me .. a few new podcasts that others may enjoy:

SpyCast - Fascinating stories from the intelligence communities. Last one I listened to was an extended interview with the actual guy involved in the "Argos" fake movie cover used to get the hostages out of Iran. They made a movie about it recently, I believe.

The Pollsters - A Republican pollster and a Democrat pollster talk about what's new in polling that week. I started listening to it just after the election when they were discussing "what went wrong" but it's interesting all the time, I discovered.

Listening to lots of podcasts and audiobooks and talking radio because I'm spending lots of time resting (in waterbed away from computer) and asleep lately. According to my magic Apple Watch averaging 10.5 hours sleep this week, but probably 2-4 hours more per day when I'm in the waterbed but not asleep. Hence lots of audio input. Thank ghods for technology.

Ability to type fluctuates. Tonight I'm relatively OK (i.e.: it hurts and I type this in about 5 small parts) but other days it's on-screen keyboard only. Luckily MacOS Sierra is way better at on screen keyboards than previous OSs because it's built in now, but they still suck basically.

Stay well, friends.
r
jeshyr: Blessed are the broken. Harry Potter. (Default)
OMG.

I just realised that in 11 more days my blog will be TWENTY.

How does one commemorate blogaversaries? I feel like I should bake it a cake ...
jeshyr: Blessed are the broken. Harry Potter. (Default)
Been busy trying to change some stuff ...

1. Found out in a fit of "OMG IT'S TOO HOT!" type frustration that it's quite possible that the local housing department (I'm in public housing) actually will get me an air conditioner since I have a huge medical need for it. I tried to get them to do this years ago and it was impossible at that time, but it occurred to me that things change in 15 years (who'd've thought!) and so I tried again.

It was pretty funny actually ... I rang the housing department expecting to leave a message for somebody who'd probably call me back in a few weeks, being that it's between Christmas and New Years. So I left a message then I swear FOUR MINUTES later he rang back! I was so taken aback it took me a moment to get my brain online ... so he looked things up and eventually said there's this very short list of qualifying conditions, it only has these super uncommon medical conditions and he sounded *very* dubious, like he'd pre-decided the answer was "no" but was going through the motions.

So I asked him to read the list ... and when he got to the end (amidst some hilarious pronunciations, I don't think he'd ever tried to say "Fibromyalgia" or "Polymyositis" before!) I said I actually had official diagnoses of three of the conditions, which is absolutely true. You could hear the light switch flick over in his brain and suddenly he was very helpful.

So I got all the forms filled out by my doctor and me and appropriately signed and emailed them back to him today. Fingers crossed!!

(I do have an air conditioner in the lounge room but my CPAP is in the bedroom and shifting between hospital bed in lounge and waterbed in bedroom is one of the things that's HUGE for controlling my pain. Trying to get support workers to shift CPAP on hot days and then dealing with the huge pain and not being able to shift back at midnight if the pain trumps the heat is just too much to deal with anymore.)


2. I've finally caved and decided to increase my neurontin dose again. The migraines are just increasing no matter how strict I am with the low histamine anti migraine diet. I can only conclude that my general everything-getting-worse is what's driving the migraines and that's totally out of my control. So I figure it's time to resort to the Big Guns and increase the meds.

I'm rather peeved by that, I worked really super hard to get the neurontin dose down, so increasing it feels like this big defeat even though it's totally not. Even after the increase it's only at half my maximum dose.

So anyway started on that higher dose tonight, so I'm not sure if it'll be a hellish week while my brain adjusts or if it'll just help straight away. Going down in dose is always terrible but it's 15+ years since I ever went up so I can't remember.



That's all I can think of right now. Happy Holidays everybody, and here's to 20173
r

Wishes...

Dec. 27th, 2016 11:14 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Wishes for 2017? I'd just like to stop getting sicker. Even to be a little healthier so I could occasionally pop down to the park in my wheelchair would be nice.

It's getting pretty scary levels of sick. I'm thinking I'll have to cancel my monthly Xolair shots soon because I won't be able to get to the hospital to have them. It's taking 2 separate appointments in separate weeks to get my eye test done (to make sure the Plaquenil isn't messing up my eyes), and the idea of getting that repeated every 6 months just makes me think if I can still get to the optometrist in 6 months I'll be surprised.

My Apple Watch says I'm taking between 1000-2000 steps per day. My Apple Watch is clearly deluded on this point, because being this bedridden makes it pretty easy to actually calculate with high accuracy how many steps I take in a day. From my day bed to the bathroom and back is just under 50 steps. Same from the night bed. Today I counted and I go to the bathroom perhaps 18 times (I drink a ton and I didn't sleep so well last night), so I might conceivably get to 1000 steps if I round everything up (20 * 50) but there is no way on this earth I am getting to 2000! On the days I go out in my powerchair it's counting even more, but I assume the wheelchair confuses it. Apple makes a whole bunch of noise about how their Apple Watch now understands "wheelchairs" but their literature only even mentions manual chairs, and I can see why.

Christmas was hard - I was too sick to go spend the day with family so that sucked emotionally. On the other hand I did not have to go outside in 36 degree C heat, so silver lining there. Yay air conditioning.

Hugs,
r

PS
Have been even stricter on migraine-reducing diet for last few months and migraines are still getting worse. Very unfair, body. Gimme a break.
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.

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

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