Buhhhhh

Image via WikipediaSo even after 6 weeks on nortriptyline my migraines don't seem to be improving.  I've had 4 this week and no less than 2 each week since I started the nortriptyline.  Some of them I've been able to cope with.  Others have been really awful.
This has led to me slacking off on doing Wii and my PT exercises at home.  Not good.  Working on that.

I did, however, discover that if I really feel like I shouldn't do the Wii (as opposed to just being a bit lazy) I probably shouldn't do the Wii.  I had a migraine Friday but though "oh, well, if I just do some of the standing yoga poses so I'm not moving too much or lowering my head (that makes stuff hurt worse) it'll be fine and maybe I won't feel so stiff and sore."  I did the Warrior pose, the Palm Tree, and the Chair.  Half-way through the Warrior pose I started to sweat and shake, with the Palm Tree is was practically vibrating and started getting nauseous, and the Chair I nearly fell over and actually soaked through my shirt with sweat in a few places.  This was a 6 minute long workout.  I usually do 15 minutes and don't break a sweat even if it's a bit warm.  So,  yeah.



My involuntary movements have made a come-back as well, usually on the same day as a migraine.  Fun times.  I've been really, really stiff lately too - mostly muscles rather than joints from right after I get out of bed.  Yoga with the Wii helps a bit, so does a warm shower, but if I stay in the same spot too long, my back stiffens up.
My shoulders and neck are permanently tense again which is part of the migraine feedback loop.  And my sciatica or whatever the hell it is that makes it feel like someone is pinching my ass from the inside or sending laser beams from my ass down to my heel is flaring  up.

Anyway, I have a neuro appointment this coming Friday.  We'll see what else we can do with the migraines, I plan to ask about a specialist.  I've done some reading about vertiginous migraine which is sort of interesting and might help explain some of my balance problems.  Or not.  Whatever. I just want to stop having the damn things so often.  I feel like crap when I have them and can't get much of anything done, then I have the hangover, which sometimes lasts a whole day or more and then it seems like by the time I've recovered from one, another one shows up.  If I get too active too soon it can trigger another one (like last week when I had to hobble-run for a bus that didn't follow the proper route, missed it, and then had to haul ass for 2 blocks to make it to an appointment without being late; within an hour I had an aura coming on and within an hour of the aura the pain hit.)

I've also started having the occasional one on my left side.  In the past they were always on the right and even now are usually on the right.  So, maybe a specialist, maybe we'll up the dose of nortriptyline or try something else.  I might also see if it's worthwhile to have another sleep study to see if my apnea has gotten worse and is maybe contributing. 


The image is of cortical spreading depression, which is one of the models for explaining visual aura in migraines.

Spinning My Wheels

What little reliable information I can find about Functional Movement Disorders says that, while improvement may occur over time, there will be highs and lows in that overall trend toward improvement.
I'm not sure if the last week or so has been a low or a plateau or what, but it hasn't been pleasant.

I've been dealing with a constant sore throat and general feeling of mank for a month or more. I often describe my general overall sense of health as feeling as though I'm just coming down with or just getting over a cold or flu. This has been a touch worse, but something I can generally cope with.  I'm guessing it's more related to allergies and Chronic Fatigue Syndrome than FMD.  I have noticed that the general feeling of flu-ish-ness gets worse if I over do it physically. 

The past week or so, though, has seen what seem to me anyway, like setbacks or stuckedness with my movement issues.  I've been far more tremory.  A certain level of tremor in my hands is "normal" for me and has been since about 2007, but this has been body-wide.  Wii Fit Plus exercises have been more challenging and I haven't been doing as well at them - that, at least, is a more objective measure than my overall sense - the scores are there to see.  And I can't seem to push past 12 or 13 minutes without trouble.

I've had or been getting over or coming down with a migraine what seems like almost constantly all summer.

I've been under a bit of stress - I suppose the job interview last week might have contributed a bit.  My pelvic movements have been the worst they've been since May starting Wednesday evening.  I'd barely had *any* major involuntary movement in my pelvis/lower torso since May, actually.  It's deeply frustrating.  It's also uncomfortable. 

I've been in more pain in general lately and had more brain-fog days.

I've been sleeping 12-14 hours a day and still feeling exhausted.  And my sleep schedule is shot to hell.

It would be easy, at this point, to say "screw it" and give up, but obviously that's not what I'm going to do.  I do my Wii Fit every day.  I try to get out and walk (though the heat wave made that hard).  My new therapist has arrived and settled in and I had my first appointment with her last week.  My formal physical therapy is coming up in August.  I try to be as active as my brain and body allow in any given day.  It's very rare I spend a day in bed.

It's just deeply frustrating and a little frightening.  I'm trying, I really am and I do feel better, but not well.  And the very nature of FMD or psychogenic disorders or whatever you want to call them suggests that the ability to heal resides directly with me.  Which makes it very easy to feel guilty about not being better.  To wonder if I really want to be better.  Is my brain playing tricks on me?  Am I playing tricks on myself?  Despite all the evidence that I am reasonably insightful am I missing some huge part of the picture.  Am I, in fact, seeing some benefit to being sick that I just refuse to acknowledge?  Something powerful enough to keep me disabled? 
Or is that a bunch of bull-shit?
And on top of that - does it matter?

Zafu Pinning and When Did I Start Getting Old

Today I finally got around to working on the zafu some more. After careful deliberation, I pretty much decided that the numbers and weirdness from the PDF pattern I had were worthless and decided to mostly wing it. Today I tried to start pinning the circles to the pleated sidewall bit. And broke my brain.
So, I started whimpering online. But, Alwen came to the rescue! Yay! I've got at least one of the damned circles pinned. I had to take a break as my back decided to start being all "Biznatch, I *know* you aren't going to make me stand up or sit and work after days of that stupid video game and walking." So, I made a cup of tea and settled back on the couch with heating pad after taking pictures of the pinned zafu and then loosing the camera and wandering around the apartment looking for it like a fool.


And then my Mom called from my nephew's graduation party. Who let him turn 18? He's joining the Army! And he sounds *just like my Dad*! Plus, he's huge - entirely too big to be taken down with a well-aimed cane swipe. What is this?!? I'm not grown up! Who let him be!?!


Anyway, pinning the zafu drove home an important point. A lot of things start to make a lot more sense once you actually start doing them than they do when you're staring at them and then at directions trying to make sense of them. It also drove home the important point that without the internet I would probably be in a corner covered in fabric and pins rocking back and forth in the fetal position.

And on a side note - that damn flying bird game on Wii Fit Plus can suck gangrenous donkey balls. And that stupid thing is going to say I'm 40 until I actually *am* 40. And my hips and back and shoulders hurt. Stupid freakin' being healthy...

Suck It, Wii Fit Plus!

I did another body test today.  My age dropped to 34.  Wooo!

I'm also in a fair amount of pain, but whatever.

Also, the juggling game is IMPOSSIBLE!

Self-Esteem Boosting

Wii Fit Plus thinks I'm 50 and is shocked that I can walk without tripping over myself.  And Oreo likes to bark at the background noises in the meditation/Lotus Position mini-game and otherwise make a distraction of himself.  Also, I think it wants me to gain weight so my BMI is a perfect 22, but it can suck it.  Most of my clothes fit and we're keeping it that way.

It says Tom is 39 and also thinks his balance sucks, but for a different reason. 

We're of course responding to this in a completely mature reaction and at no point have I flipped off the machine or Tom.  Nor has Tom said anything like "it's okay, I am only 39 and you're 50."

Oreo weighs 15 lbs.  He doesn't get to play any games though.

All of the balance games were a challenge and even with just 5 minutes of playing, I have aches.

Also, WTF is up with the random flying Panda heads in the Soccer Ball Heading game?  Are they randomly assaulting furries and throwing their costumes at us?

Anyway, the plan is to do at least 5 minutes with it every day, probably yoga in the mornings, but possibly other things and keep up with my daily walks too.  We'll see how that goes for being enough, but not too much activity.

Tom is doing the skateboarding right now and it looks awesome but really freakin' hard.  Oreo is deeply baffled by Tom trying to speed up by moving his foot on the floor, which is hilarious.  He just sat right next to him and stared up at his face for a good minute with his head slightly tilted.  Then, since we're obviously playing some sort of game, even if it is a weird human game, he went to get his tennis ball and join in.

Yet another slow day

I don't know if I wore myself out last week, if this is yet another permutation of whatever the hell is wrong with me, or if it's simply a bad flair of whatever is wrong with me and my thyroid meds haven't kicked in yet or what. Whatever it is, this has been a rough week. I had a migraine spanning Sunday to Tuesday with no more than a few hours pain-free between times. The remainder of the week I've been exhausted - part migraine hang-over, part something else. My pain levels have been up too, though I wasn't too terribly twitchy until today. And my hands are still swollen. Joy.

I've also started getting short of breath really easily again - no idea what that's about. Allergies, perhaps. Seriously, on occasion, just getting dressed has me panting. Anyway, definitely something to bring up the next time I see a medical-type person.

Tom kindly went to the library for me last night to get me some new reading material - First Man in Rome and I, Claudius. Yay! Now if I could just perfect knitting or crocheting while reading...

We've been making our way steadily through the new Doctor Who via Netflix and the Roku. Last night was the first episode of Series 2 - The Christmas Invasion. I giggled through the last part of it quite a lot - I totally want to save the world in my jim-jams. :P

I also played Wii Sports last night for the first time in well over a year. I was thinking maybe a bit of light exercise might make me feel better. While it was fun and I may try to start doing it more regularly, my arm is killing me today. And my age was calculated at 70. Thanks, Wii - I needed that. I would look into Wii Fit, but me + ataxia + balance board = trip to emergency room. Suck.

Shopping IS Therapy, Dammit

Today I slept most of the day due to the exhaustion of the most recent skirmish in the mouse wars.  I had actually set an alarm for 11 AM, figuring that would give me more than enough sleep.  I woke up, was still really stiff and hurty, and so decided to read and stretch a bit in bed before getting up.  The next thing I knew, Oreo was barking and wagging his tail in my face because Tom was home from work.  Sigh...

Anyway, I had been wanting some fusible interfacing for some projects I want to work on and Tom had wanted to go to a Home Depot to poke around, so we set off.

I scored my fusible interfacing (at a discount, because the instruction sheet had left marks on the interfacing) drooled over fabric, grabbed some canvas tape, and a bias tape maker.  Serious fabric drooling.  I should just get over my cheapness in not being willing to pay $8/yard for pretty quilting cottons, but then again, if I did that, we'd be even more poor than we are and be buried in fat quarters or single yards fabric useful only for making bags and pillows and stuff. Mmm, bags...

Ahem.

Anyway, we also dropped by a Best Buy, because the stupid vermin had chewed through the cord on the motion sensor for the Wii.  Shows you how much Wii we've been playing.  We also (after much wandering and annoyance) discovered that Lego Indiana Jones has finally dropped in price.  Sweet!!!!  As it seems to also be good for my motor skills, all the better!

Then we went to Home Depot and wandered around the nurseries.  We now have baby sweet basil, mint, rosemary, lavender, and Italian parsley nestled happily in a trough planter and smelling delicious.  The aloe has been replanted in the pseudo-Predynastic pot.  And our seedlings of oregano, curly parsley, and lavender seem to be doing well despite early depredations by the vermin.  The papyrus plant seems to be doing okay as well.

I am very excited by our little garden - I've never done much with plants before, so I'm having fun pestering Tom with questions.  I'm also looking for either  some better options or tricks in iCal for reminders so I will remember watering and other household chores (this has become a major problem for me).  And I'm looking forward to cooking with fresh herbs, figuring out good drying methods, and making sachets.  

Therefore, I am in an extra good mood this evening, despite the lateness of this post. Tomorrow I get to go for a haircut, which will make life even better as I'm currently getting uncomfortably close to a mullet in the back (I cannot stand hair on my neck anymore).   Better, a friend is taking me, thus sparing Tom from having to hang around a girly salon for an hour. He gets to stay home and play Wii.  :P

Amigurumi Raving Rabbid

Amigurumi Raving Rabbid
Originally uploaded by henny-haekelt

The crafter really captured the manic quality of the raving Rabbids! I had a blast (with much swearing thrown in) playing one of the Rabbid games on Wii, so of course this is something I like.

My teenage air-guitar fantasies come true

The Beatles Rock Band

I realize this is old news, but I don't care. All I care about is how to acquire the $250 I need to get it. Anyone want to donate to the "Get a Cripple an Awesome Wii Game Fund?" I promise to take video of me playing and post it here!

Seriously - I dreamed about a game like this long, long ago when I listened to the Beatles 24/7. And thus I am ridiculously excited about this now, even more so because George Martin's son, Giles, is involved in the production. How cool is that?

Right, off to air guitar with my cane...