Journeying/Journalling

Months and months later the cat is still in love with this piece of bubble wrap and sleeps on it every day. My cat is weird :)

Pic shows my cat Vesper curled up in a cat bed on top of a bit of bubble wrap. The cat and the cat bed are almost the shame shade of tan.


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I am greatly looking forward to knowing the answer to life, the universe, and everything tomorrow.

PS
Here is my towel.

[Visual Description: Pic of a very boring blue towel which has clearly never been ironed.]


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Are you one of those people who opens bunches of tabs in your web browser? Open one to these gently changing photos of kittens and - yay! - automatic brain break every time you check your tabs. Highly recommended in these stressful times.

http://www.eyebleach.me/kittens/

Depending what hours of the day you're online (and how fast your video loads) something like that TinyKittens Livestream might be a good option too. Just so long as it's something that makes you feel positive :)

r

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I have done that stupid thing where I switched two medications in quick succession and now I'm getting more migraines. That might be random chance or it might be a side effect of one of the medications. And it's my birthday on Friday so I really want to feel good for that. Argh.

I will do the sensible thing and wait and see what happens because another week will tell me if it's a side effect or if it's random ... but ARGH and dammit.

You'd think after a billion years I'd know better ...

r

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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.


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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.

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(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?

This entry was originally posted at http://jeshyr.dreamwidth.org/319716.html. Please comment there using OpenID - you can log in with OpenID using your LiveJournal URL which is yourLJusername.livejournal.com.

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:



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

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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 ...

This entry was originally posted at http://jeshyr.dreamwidth.org/319211.html. Please comment there using OpenID - you can log in with OpenID using your LiveJournal URL which is yourLJusername.livejournal.com.

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

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