urocyon: Grey fox crossing a stream (Default)
I've got a lot to process right now. It's looking remarkably like a lot of the problems I've been running into may be coming from an inherited kind of temporal lobe epilepsy, which is still somehow scary even though a new label doesn't really change anything.

With my known sensory sensitivities and processing weirdness, I'd just assumed that the weirdo sensory and emotional episodes were coming from getting overloaded and stressed enough that my nervous system short-circuited and caused all kinds of further weirdness. Yeah, that's still a pretty good description of it. :-|

Including some "meltdown" episodes, mostly when I was younger, that actually looked like some kind of seizure to my mom at the time--but she was less concerned after she found out that other of my biodad's family members (the autistic-looking ones, surprise!) do exactly the same thing, down to very specific strange movement patterns they've usually never seen before. (Then we get splitting headaches, start slurring speech and having coordination problems, and have to go lie down...erm, yeah.) It even has a name, the "John Fit", after one ancestor who kept having them pretty much on a daily basis, all his life. Most of the rest of us seem to learn to recognize them coming on and avoid further overload. My biodad still occasionally had them when I knew him, and I have only narrowly avoided several as an adult.

I've also had other experiences that look a lot like complex partial seizures, but mostly simple partial seizure-type experiences on a daily basis. More on the distinction, and some of the phenomena: Possible Temporal Lobe Symptoms.

Actually, I'd been aware for years that a lot of people with similar neurological setups have seizure disorders, including TLE, and a lot of experiences people I know had described with that have sounded way too familiar. I didn't know that this kind of thing is also more common among people with celiac. I wondered about the possibility when I was still being considered bipolar (and yes, there is confusion there), but apparently it was just too disturbing to look into with the stress I was already under. Another rather interesting article there: Complex Partial Seizures Present Diagnostic Challenge.

It does make me more than a little angry that some experiences that may well have been coming from seizures got treated as signs of serious psychological and/or psychiatric problems with poor insight, and I got treated like crap out of frustration when the medications that "should" help just didn't. The idea that it was "just" autism aggravated me enough, but fairly straightforward seizures, FFS?! Especially when the medications I had the most bizarrely unpleasant experiences while taking (which were usually dismissed) are well-known for lowering the seizure threshold. Probably the worst couple of months I've ever had were on Wellbutrin/bupropion, and some of the things I've assumed were EPS from neuroleptics look suspiciously like clusters of complex-partial seizure activity. (Apparently being a CYP2D6 poor metabolizer, with increased-to-toxic blood levels of certain meds, could not have helped at all.) And I may well have continued to have lowered seizure threshold after stopping taking them, leading to a lot of the continuing problems; it happens.

I also felt a lot better on Klonopin/clonazepam, which is often used to treat seizure disorders, and had a lot fewer weirdo sudden panic and other emotionally overwhelming episodes. I also slept better. Interestingly, I never had withdrawal symptoms of any kind from other similar drugs (Xanax, Ativan, Valium, Librium), but got what I now believe to have been increased seizure activity when I went off the Klonopin. It was a very bizarre experience. Xanax and Ativan helped too, but not nearly as much; Klonopin is longer-acting and more specifically used for epilepsy.

Yeah, I know a lot of the anger is a way of dealing with the anxiety and other more difficult-to-manage feelings, but geez. I thought I'd just about reached my anger limit over the earlier misdiagnosis, mishandling, and shoddy treatment (which nobody deserves, regardless of diagnosis), but apparently not.

One of the things I was particularly interested to see, and which really got me thinking about the possibility, was the connection to migraine-type symptoms. An interesting paper (PDF): Differentiating Migraine From Epilepsy. From what I've been reading, I am strongly suspecting that at least most of my "migraines" are really simple partial seizures (the "aura") followed by postictal headaches, nausea, etc. It made entirely too much sense. The two things seem to be both connected and frequently confused, anyway. I had been suspecting that a lot of the really troublesome brain fog, fatigue, and depression ("negative symptoms") I've been having day-to-day might have something to do with the frequent migraines besides the medication after-effects, but, yeah, this is the kind of thing you'd expect with frequent seizures.

So might be the really annoying episodes of "sleep drunkenness", especially after I get jerked awake for no apparent reason (duh!); confusional arousals apparently also go along with TL seizures in particular. I had a lot of trouble with "night terrors" as a kid, too, and it still happens sometimes. I had no idea that the sweats might be related.

In a way, all of this is encouraging, because there may well be something to be done about the freaking headaches and brain fog, which have really been affecting my quality of life a lot. OTOH, I am still dealing with the medical PTSD, and have had some bad experiences with anticonvulsants in past. Topamax/topiramate didn't seem to help any of these symptoms, and gave me serious brain fog and language difficulties; Depakote/valproate messed up my liver function and turned me into a zombie who nonetheless managed to gain 40 lbs. in a month (neat trick when you get up to sleeping 20 hours a day!). I am scared by the idea of trying to find out if TLE is the problem--especially since it's hard to diagnose, frequently not showing up on EEGs--and get proper treatment if it is. Especially since I can't just make an appointment with a neurologist, under the NHS, and find another one if the first one is an ass.

I'm also really disappointed because I was hoping to finally get a British driving license soon. I've been driving since 1991, and it's never been a problem; nobody else in my family who has these symptoms has ever gone on to have the consciousness-losing kind of seizures, that I know of. (I'm pretty sure I'd have heard about it!) But, it's understandable that the DVLA would be really cautious about this kind of thing. And now it concerns me that maybe I've been dangerous on the road without even knowing it. :( With the 90%+ suspicion that I've been having seizures, I don't know that I can go ahead and try to get my provisional license in good conscience, officially diagnosed or no--and I was really looking forward to being able to drive in the UK.

This has given me a lot to think about. And now I've got Joy Division stuck in my head.

urocyon: Grey fox crossing a stream (Default)
Some further evidence that this is, indeed, a viral problem I'm dealing with: my blood sugar has gone absolutely wild, without other factors changing remarkably. At this point, I think at least half the crappiness is down to hyperglycemia. I'm really not in good shape with that ATM, and suspect that I'd be feeling much better much more quickly (and hold up to the viral component better) if my blood sugar were back under some kind of control. It's had me scared, and even more worried about getting the house ready to move within a couple of months' time.

I've been stressing more about honestly not being able to get an appointment at the GP's (between medical PTSD and non-voice accessibility problems), which has probably not helped my health. (Especially since I'm suspecting I stressed my way into being vulnerable to icky viruses in the first place.) It's a very uncomfortable situation, which I haven't been able to see many ways out of. Being sick and drained of energy leaves me way less able to deal with just about everything else, in a "Help! I Seem to be Getting More Autistic!" kind of way. Stressing over it only makes things that much harder to deal with.

But, I am not feeling so trapped now, since I thought to look more into other options. Sitagliptin (Januvia), a DPP-4 inhibitor, is the only medication which has helped me so far, without any noticeable side effects. Apparently, it's down to poorly-understood insulin resistance subtypes whether a person will respond well to metformin or a DPP-4 inhibitor; a vanishingly small number of people are helped by both. At least, according to the doctor in the US who gave me the Januvia in the first place--and that makes sense.

So, I am tempted to try berberine, which is also a DPP-4 inhibitor (along with some other actions). There has been some promising research, and it seems worth a try after I track down a suitable supplement.

With any luck, that will at least help me get into enough better shape that I am capable of dealing with the GP, without so many worries about getting steamrolled, dismissed, and possibly even sectioned because I am obviously not in good physical shape, I'm behaving more "weirdly", and my verbal communication skills (especially in realtime) have mostly gone down the drain.

This GP has already shown a pattern of dismissing what I have to say, and it's hard to vote with your feet under the NHS. Small consolation: he's never said one word about my BMI, nor said anything to indicate he assumes I'm a couch potato--and even commented that, as fit as I looked already, diet and exercise probably wouldn't cut it. Lack of blamy comments is refreshing, even if some of his other behavior isn't. This is also the guy who didn't want to hear about persistent serious GI effects and symptoms of B12/thiamine deficiency from the metformin.

It irks me to have to do endruns and pay for stuff in the hopes that it will work--especially when I can theoretically get free prescriptions under the NHS--but accessibility is accessibility. And this is not a situation where "I guess you'll just have to do it" (complete with angry/exasperated tone) is of any help whatsoever.
urocyon: Grey fox crossing a stream (Default)
Looking for something else entirely, I ran across some info I wish I'd had well before this.

From Johns Hopkins' Diabetes and Exercise -- Keeping Your Blood Glucose Levels in Check:
If you have diabetes, you should always check your blood glucose levels twice before exercising: once 30 minutes in advance, and again just before starting. This routine will let you know whether your blood glucose is stable, rising, or dropping.

A safe pre-workout blood glucose level is between 100 mg/dL and 250 mg/dL. If the level is less than 100 mg/dL, have a carbohydrate snack (such as a piece of fruit or three graham crackers) before starting to exercise to prevent hypoglycemia.

People with type 2 diabetes should limit snacking, however, especially if they are exercising to lose weight. If this is the case, your doctor may recommend lowering the dose of your medication on the days that you exercise. If your blood sugar is above 250 mg/dL and you have type 1 diabetes, test your urine for ketones; delay exercise if ketone levels are moderate or high. Regardless of your type of diabetes, do not exercise if your blood glucose levels are 300 mg/dL or higher.

I had figured out to watch for hypos on my own (medicated or no, mine seems really reactive), but had no idea that I should be careful at higher readings. Why is that?

From Mayo Clinic's Diabetes and exercise: When to monitor your blood sugar:
300 mg/dL (16.7 mmol/L) or higher. Your blood sugar may be too high to exercise safely, putting you at risk of ketoacidosis. Postpone your workout until your blood sugar drops to a safe pre-exercise range.

It can also send your blood sugar higher, for a variety of reasons.

This would explain some things. :-| I also doubt that it's very good for your system to have such rapid swings from high to low, which is more likely to happen when mine is pretty high starting out. (The way that makes me feel for a couple of days afterward would also suggest it's not great!)

Now I'm wondering how I managed to miss that, up to this point. If you've got Type 2, medical professionals usually just push exercise (you lazy slob, you!) without much further information--or even finding out how active you are already--but I've done rather a lot of research out of self-preservation. Maybe I managed to skim over that very important information? *scratches head*

This is yet another reminder that I need to get up the nerve to go and try to get more Januvia from the GP. Diet and exercise changes have not made much of a difference in my readings, and I'm suspecting that directly iatrogenic diabetes may well behave differently from "normal" Type 2. :(
urocyon: Grey fox crossing a stream (Default)
Just checking in quickly--hopefully, I'll be able to reply to comments and catch up on some reading later!

I've been down with some kind of virus for the past few days. While I have been feverish and a little snotty, with a sore throat and my asthma and stomach acting up some--that's just annoying. The main symptom has been feeling like instead of sleeping for at least a week, I've been getting beaten with a stick. I mean, I'm used to some degree of chronic fatigue, but this is the "don't want to sit up" kind.

Here's hoping that it's just an odd strain of flu, instead of mono or similar. If nothing else, recovery from the flu is usually quicker.

But, the weather has been cooperating better than expected the past couple of days, with warm sun. I think I'll go bask with a book again in a few minutes, and hopefully take care of whatever portion of the crappiness might be coming from elevated bilirubin. :) (I'm not noticeably yellow ATM, but viruses and Gilbert's? Good idea anyway.) And make another pot of very lightly honeyed mint tea, which I've been very, very glad to discover really does help with viral fatigue and depression. (No idea why it works.)

Just thought I should let people know that I haven't dropped off the face of the earth, or--more to the point--suddenly lost interest. ;)


Aug. 18th, 2010 04:06 pm
urocyon: Grey fox crossing a stream (Default)
I'm absolutely exhausted today, probably from seriously overdoing it yesterday because I just about could. Not the best plan, obviously, but a really hard pattern to break out of.

Many of us are familiar with the perils of The Myth of the Strong Black Woman. Well, I've got my own eerily similar version going. "[R]esponsible for the day-to-day operation"? Still happens, but without much credit or support. And this is usually still considered a good thing. (And soon enough, that thread got down to the all-too-familiar daily stuff.)

Some really fun intersections with disability there, oh my.

Today, I'm trying to take care of myself too, and rest since I need it. Without phrasing things in terms of "if I don't recuperate some, I'll be no good to anybody else". Bleh. Some balance is good.

And, on the lighter (and more squee-inducing) side of things:

Boogie Boogie Hedgehog video. Source.

And more cuteness from Pitbull Sharky and Max-Arthur, the Roomba cat. Source.
urocyon: Grey fox crossing a stream (Default)
Yesterday was pretty rough, but I'm doing better today.

Sunday night, I got what would have to qualify as the opposite of a useful chiropractic adjustment, quite unintentionally. [personal profile] vatine was having a look at something on my shoulder blade, and leaned on his forearm in just the wrong way on my behind: CRUNK! goes my left sacroiliac joint.

I think he's been concerned about unintentionally hurting me anyway, and that didn't help. *wry smile* It wouldn't have been a problem, if not for the unlucky combination of hypermobility, previous injury, and a bunch of tight muscles already putting strain on the joint.

Good thing we had a new bag of frozen peas. I woke up in the morning with room temperature peas still there, which was a little disconcerting, but it brought a lot of the swelling down. :) I will probably lie down with an ice pack again later, since there's still active inflammation, and it really helped yesterday. Things are less stabby today, but that's probably a good idea anyway. For some reason, I tend to forget about icing things. Probably because it involves slowing down long enough to do it. :-| Resting things? Not so good at that.

One disconcerting thing about this, which I also noticed with the severely sprained ankle a while back? A sacroiliac injury like this is considered to cause severe pain, and after the first night, it's striking me as annoying but manageable. Even on top of the other chronic pain. A good demonstration that I'm scarily accustomed to dealing with pain by now. "Scarily" because that's exactly how my mom missed that she had bone cancer until it was way too late.

Probably not endometriosis, after all. Yay! )

I mentioned a previous sacroiliac injury. That got me thinking again about the ballistics gel dummy model of anatomy: "It bears an eerie and unfortunate resemblance to the usual medical model, where pain is concerned: there's the skeleton and internal organs--where the Real Problems lie--and then there's this ill-defined fleshy mass encasing them." An excellent example? When I probably tore at least one ligament there (not just CRUNK!, but SNAP!), and the continuing pain was honest-to-goodness 'splained away as a special invisible bone abscess in my coccyx, which broke in the same fall. Never was soft tissue mentioned, at all.

Bizarre medical logic )
urocyon: Grey fox crossing a stream (Default)
Some good news: the still-kinda-difficult dietary changes do seem to be helping my blood sugar levels. I'm out of test strips and have been putting off buying more; since I've been avoiding the GP, I can't get free ones. I'll just have to go ahead and cave, and buy another batch. (That is definitely one thing I'll miss about the NHS: free prescriptions if you have certain chronic conditions!) But, I've been feeling relatively hypo a lot--especially after exercise--since a couple of days after the change. By this point anywhere near normal would feel low, though.

I was reminded of this because I'm having to eat something and rest a while now, after getting in from the grocery store (ended up walking down there after all). Annoying, but also encouraging. :)

Oh yes, not only did I go ahead and get some cooked chicken breast, I also "splurged" on already cut-up fruit salad. Pretty good indication of lingering poverty mentality when you're nowhere near the "buy food or pay the light bill" point, and those purchases feel like splurging. :-| But I successfully fought the cheapness urge, in the interest of not being grouchy and hobbling by the time supper's ready!

Edit: I have been doing better, though, at not kicking myself over rarely making it down to Romford Market on the appropriate days. Sure, you can get some really good deals on produce, especially if you hit not long before they're closing down (hard to beat £1 for a huge bowl of stuff!), but that takes an assortment of spoons I don't always have. First I have to remember that it is a market day, then I have to walk or bus it down there, then I have to stalk around through noisy crowds and see what looks good, then I have to drag it home and figure out what to do with it. That hasn't been happening much. Though, come to think of it, I may drag Ingvar down there tomorrow afternoon. *g*
urocyon: Grey fox crossing a stream (Default)
Ingvar and I met up at the station on his way in from work, and we went to pick up the new glasses.

There had been some bizarre problem with his sunglasses, something about the level of extra-thin lenses he'd picked not working with the frame size. He actually stopped in yesterday to find out what was going on with them, and had to pick new frames for the sunglasses, because even the not-quite-so-high-index tinted ones wouldn't work in the initial frames. Still, he was under the impression that the regular glasses had arrived. As it turns out, they also had to switch his regular lenses for the not-quite-so-high-index ones, and they weren't there yet either. Too bad they didn't catch the conflict before sending the order off to be made up. At least that's £30 per lens refund due, IIRC.

Both of my pairs were there. After trying them on, I'm really not looking forward to putting them on in the morning as the optician suggested. I've been wearing glasses for 25+ years now, and this is the worst prescription change so far. It had been about three and a half years, and I wish I could find the old prescription to compare. (Naturally, Ingvar's old one is handily tacked on the kitchen bulletin board, and mine has been devoured by the Diopter Gnome.) In past, I've expected to have a headache, dizziness, nausea, and lurch around like a drunken sailor who hasn't gotten his land legs back, for about a week. That I was expecting, with the astigmatism changes in particular.

With these, wearing them for a couple of minutes made me feel like someone had jammed a rusty nail into my left eye socket, and a couple more into the cheekbone. (I just double checked that the sunglasses were the same, and it happened again!) Very unhappy muscles there. I am also having the problems with worse-than-nothing blurriness through the lens which changed a lot more (the left) as mentioned here; that person described the sensation well: "The right lens is perfect, but when I look through both lenses, it feels like some one just punched me square in the face." In a particularly nauseating way.

The left eye also feels like it's getting pulled toward my nose.

Extra fun with strabismus and eye strain )

My wonky vestibular system and some other visual processing weirdness are no doubt also involved, and I seem pretty sensitive to input changes.

At any rate, I was hoping they would check to make sure the lens was, indeed, the proper prescription before we left, but I have trouble dealing with things like that. It's frustrating. They saw I was having problems, and apparently did not find the reaction unusual with the prescription/eyeball-shape change. (Yay, shapeshifting eyeballs! :/) The suggestion? I should put them on in again in the morning when I haven't been wearing the old glasses all day, and wear them as much as possible to adjust. And come back in a week or so if it hasn't improved.

With any luck, it won't feel as awful when there is not already a day's worth of muscle strain and fatigue on the left side.

Has anyone else had this kind of thing happen with a new prescription, with myopia and/or astigmatism changes--and the right prescription? ;) If so, how long did it take your eyes and brain to adjust?

Gosh. Exotropia and fear mongering. )

Edit: I tried to play around with an interesting-looking blur simulator, based on entering a prescription. That didn't work so well with mine, which gave "beyond simulation range". Odd. Apparently it "[s]imulates prescriptions from +5 to -5 for the spherical error and +5 to -5 for astigmatism."
urocyon: Grey fox crossing a stream (Default)
I'm back and semi-coherent, having spent the weekend in a prednisone-and-antihistamine-megadoses daze. (Slept most of Thursday, Friday, and Saturday, actually.)

Thursday morning, I ended up in the local Urgent Care with a nasty rash all over, which started Tuesday but kept spreading and getting worse. I've got eczema, and am prone to allergic rashes, but this was something special. I wasn't sure if it qualified as an emergency, but finally decided that when (a) certain body parts are swollen to about 3 times the usual size, (b) you haven't slept because they're raw and on fire, and (c) you're wheezing from the allergy overload, it probably counts as urgent.

Ah, allergies! And unexpected culprits )

I'm very glad I didn't chicken out, and went to see about it. While I'm still pretty groggy today, things are much better than they would have been without the steroids!
urocyon: Grey fox crossing a stream (Default)
I am beginning to wonder if some upwind neighbors are thinking, "Gee, it's a lovely afternoon, I think I'll go start a fire." Yes, they are burning some kind of wood again, and I think it's the same people. This time it's a big enough fire that I can hear some crackling from the patio.

Currently lurking in this end of the house, since my eyes start burning and itching when I go into the part directly downwind of the fire. Max is not overly happy about this, but Punkin is. The cats usually don't get as much attention as any of us would like during the day. Punkin is in my lap now, and very smug about it. :)

Whether I like it or not, it's past time to get an appointment with the GP for more allergy/asthma/migraine treatment. This is getting ridiculous. Some of the spasmy muscles will probably calm down once they're not getting racked by frequent coughing fits*--and I would rather avoid going through another year of at least daily "sinus" migraines. Urgh.

After we move (and insurance kicks in for preexisting stuff!), I am even tempted to pursue allergy shots again. I swore never again, but the series I had before did help for years. For now, some Singulair and migraine meds would help a lot. I may try adding loratadine again, in case it helps some (definitely not enough on its own). This is already getting old.

Ah well. With any luck, the smoke will clear some soon. Maybe I should take something for my head and some extra antihistamines with coffee, and try to head it off to some extent. No pun intended.

Maybe I can find something to post about when I'm in a better mood. *g*

* The kind that have scared multiple doctors. Ones without barrel chests and asthma, that is. My lower back is not happy with them, either, never mind the chest and shoulders. Possibly worse? It only occurred to me the last time I had asthma gone crazy from a cold that this might be exactly what's been keeping the back "bad" for the past 15 years. Your chronic cough may be truly chronic when... *facepalm*


Apr. 23rd, 2010 04:10 pm
urocyon: Grey fox crossing a stream (Default)
Argh. Someone in the neighborhood decided to wait until (a) it's relatively dry out there, (b) allergies are already choking me, and (c) it's too warm to close all the windows, to burn garden debris.

OK, so they had no reason to know that "hay fever" is a paltry description for what some people downwind are experiencing, but they were surely aware it hasn't rained in a while. I wouldn't burn stuff out there at the moment. Then again, I'm used to not being able to burn things at least half the year, much less in a rather densely populated area.

Hmm, I really should try to get a fresh inhaler soon. 'Tis the season for maple pollen.

Just needed to rant a bit!
urocyon: Grey fox crossing a stream (Default)
It looks as if I should be able to manage my blood sugar without meds, after all!

It's been running under 10/180 most of the time the past few days, since I've been checking it regularly again. That includes after eating. The highest reading was 12.7/228.6, first thing in the morning. It's not swinging wildly, like it was.

This is lower--and far more consistent--than it was running, regularly, on metformin. (Not only did it make me sick, it just didn't work.) What's different? My nutritional status is the main variable that's changed. This would tend to support my speculations that being low on vitamins which are directly involved in glucose metabolism might screw up your blood sugar levels--further depleting thiamine in particular, for extra fun.

All the Maxercise (thanks, [livejournal.com profile] vatine!) lately probably hasn't hurt, but I was getting more exercise before when the blood sugar was really high and unstable. The main reason I became less active was dizziness, etc. And I haven't been needing to eat as carefully, since I've been off the metformin. One lower reading this afternoon came after I'd eaten a lunch with some brown rice, a banana, and diluted juice to wash it down! Lack of vitamin deficiency is the main factor that's left.

This is very encouraging. I'd wondered before why nothing I did seemed to make much difference in blood sugar levels, beyond the obvious like consuming huge quantities of concentrated sugar. It was frustrating and discouraging. Now, at least I've got a tentative explanation.

The Januvia didn't give me any noticeable side effects, while seeming to work, but I'd rather not take it if I don't have to.

Oh yes, and the depression is much better now, too. Some of that is probably also from correcting the deficiencies.
urocyon: Grey fox crossing a stream (Default)
Looking through Vol. 1 of Travell & Simons' Myofascial Pain and Dysfunction--which I haven't bought, expensive as the set is--after it turned up on Google Books when I was trying to find a reference on short arms and ill-fitting furniture, I ran across some other interesting info.

Yep, it's probably a good thing I went back on the B complex, plus the B vitamins in Magnesium-OK. I was not remembering that, besides the swinging thyroid weirdness (which I've been getting again, from prolonged stress), the repeatedly uncontrolled diabetes will interfere with absorption and conversion of a number of things. Including B vitamins for which I'm showing signs of insufficiency, or outright deficiency in a couple of cases. The disturbing oculomotor weirdness (not to mention increased brain fog and fatigue) I've been running into lately may well be coming from being low on thiamine, for example. The ear infection has proven much harder to deal with because I was already getting dizzy from my eyes not wanting to focus properly, and probaby more directly from vitamin depletion.

I was also not bearing in mind that the ethnic liver chemistry may well be changing requirements for a lot of things--besides the lingering celiac absorption issues--as a large part of the "wild natural individual variation" thing. "Enough" determined statistically--mostly from samples of rather different ethnic background--may well not be enough of some things for me at the best of times. Judging by the traditionally high intake of a number of foods full of nutrients I seem to be running low on--like leafy green veggies, beans, fish, and nuts--back home, this would not surprise me at all.

Yeah, I'd recognized the feeling of being low on B12 again, but was blaming a lot of the rest on spending months* really running myself into the ground, with neglect and overt under/malnutrition. That likely had a lot to do with it, though in a more complicated way than I had thought. No wonder I've been craving liver, which is chock full of several nutrients I seem to be low on right now. (I think I will go ahead and buy some later, and [livejournal.com profile] vatine doesn't have to eat any.) Trying to get more of a number of things from food sources has not been enough, and no wonder! I may just need to set up a pill box to help me remember the supplements--which I may well just have to keep taking regularly, judging by this experience.

The good news is, assuming I get sufficient vitamin intake to work around the absorption/conversion oddness, apparently most of the symptoms should be much better within 4-6 weeks. I was starting to get scared by some of this stuff**, and it's reassuring to find a probable explanation which is easier to do something about than the nebulous "stress".

Another helpful thing is just finding out that I've got a "good" reason to be feeling pretty damned disabled right now. ATM, I'm too dizzy and clumsy to risk a jaunt through the shower--what with all the actual falling down lately--but am getting ready to slather on more deodorant and head out grocery shopping anyway. Trying to apply the same standards to myself that I would to a stranger on the street is a bare minimal goal, but it doesn't always work! I thought I had come to terms with having a pretty variable apparent functioning level by now, but it seems not completely. Ah, the fun of less obvious (not just close to "invisible") disabilities, and the mess of internalized BS which gets bundled with them.

At least this has provided a wake up call, making it abundantly clear that I really should slow down and take better care of myself. That is what I'm going to have to do for a while, and the omnipresent other considerations can go hang. Shame I'm going through another spell in which this kind of thing is needed for me to admit to myself that I really am dealing with disabilities--but, all things considered, it's a good thing I did get a jolt! Continuing to run myself into the ground, mainly to show myself that I can, is just plain stupid.

* I say "months", but this has been going on for the better part of a year now. No wonder it's catching up.
** And even more hesitant to bring some of it up to the GP, having been on the wrong end of iffy conclusions being jumped to if your problem is not a common one, way too many times by now. Watching how that kept happening with my mom did not make me any keener on reporting things like oculomotor problems, and likely being given Haldol for my troubles by the well intentioned. Especially since I'm looking more autistic these days, in part from dealing with the health issues.

Edit: This is also likely to get one's symptoms taken less seriously. Largely between "looking more autistic" and associated bad experiences, I have not hobbled screeching and whining in search of pain relief. And I manage to look more functional, and get more done, than probably 95% of other people with similar pain and other symptom levels; therefore, the pain could not possibly be that bad. Not being neurotypical--and not responding in an expected manner to high levels of pain--definitely helped my mom get into the situation she did. It's scary.
urocyon: Grey fox crossing a stream (Default)
I haven't been around much lately, and my first impulse is to apologize for it. But, it finally dawned on me a couple of weeks ago that this is not an example of Not Trying Hard Enough, but of overload levels affecting my language skills (and other stuff). Trying to translate thoughts into words (part of my verbosity comes from this, throwing enough words at concepts so that maybe some of them will stick), then type them out, gets harder when there are a lot of other things sapping energy. So much for the persistent idea that I don't have significant communication issues. I can't help but be reminded of Bev's incisive I Am Joe's Functioning Label. Ouch.

It took having to try very hard to avoid going into the ever-popular John Fit (family subtype of the rather violent meltdown episode, which is apparently something to behold, especially with the distinctive unlearned "twirling in midair" movement pattern) for the first time in 10+ years, before I figured out what kind of persistent overload levels I'm dealing with right now. At least I know that it's avoidable now, and what's happening in the first place. (When I tried desperately to suppress them before I knew what was causing them, I just got some self-destructive substitutes going, which were treated as a separate problem.) I'm fighting feeling bad about not going out much, which cuts out a lot of troublesome stimuli, now that I am aware (a) what's going on, and (b) that it's very temporary. I'm spending a lot more time resembling Amanda's How to make a phone call, in 70 easy steps, and kicking myself over it less.

At least it finally occurred to me to ask for some help getting some of the factors under control. I have started taking paroxetine again (forgot all about it once I got back here), since some serotonin tinkering could only help right now; having depression creep up on me now that I can let myself relax more hasn't helped. I tend to forget, or at least not take fully into account, some ongoing pain and health issues--especially when other things are distracting me from dealing with them--when they're still there in the background, adding to overload. Getting my blood sugar managed again will no doubt help a lot (especially since I still keep forgetting to eat), and I did recognize that I was staying so overloaded that calling the doctor's and making it there on my own was just not likely to happen, until and unless some of the other things were taken care of. I saw that this was not yet another example of Not Trying Hard Enough (kind of trained to be a broken record, eh?), and asked Ingvar for help with the impasse. Yep, that's still hard to do sometimes, though I have had even more evidence that pushing yourself until you cannot do so anymore is just not reasonable, from watching my Mom.

No, I'm not complaining nor feeling particularly sorry for myself, just explaining what's been going on. It's amazing what some knowledge, coping skills, and perspective can do for one's perceptions of a situation.

I'm mostly trying not to beat myself up or push myself too hard to do things that will be more overloading, just because I still tell myself that I "should". Applying compassion to one's own life isn't necessary easy, with sufficient training to the contrary, but I think I'm learning. This also makes it easier/vaguely possible to see other options, and have more energy left to pursue them. For example, I have had to admit that getting the pet care business up and running is best delayed until I can actually talk on the phone and go out on a predictable basis (duh). Instead of badgering myself about it, I've started making jewelry again in the meantime. I have also started learning Cherokee, since I feel capable of doing that right now.# Keeping things picked up out of the floor and learning a language require very different abilities. I can at least see that kicking myself over not being so good with applying the cleaning skillset ATM is not going to help me get anything accomplished, rather the reverse. I've still got skills I can put to good use.

Speaking of not beating myself up, I have found a good antidote to getting down on my physique: the Warriors of AniKituhwa dance group. I'd been impressed by still shots of some of them in some museum stuff Sid's sister thought we might be interested in, and brough back from a trip there this past fall--and by "impressed", I partially mean "falling over laughing in recognition". They've also done some rather funny tourism ads for Cherokee, NC. One of the more impressive things was recognizing that these guys are actually more striking because of the way they're built. Maybe what I really need is some red ochre and bloodroot. I'd been trying to keep Alexander McCall Smith's "traditionally built lady" point in mind (with all the associated humor), but these guys kinda smacked me in the face with it. :)
# This is largely because it's very accessible as these things go, to the point that the Nation in OK is offering free online courses. It seems slightly more relevant since, by traditional reckoning, my lineage turns out to be dual Tutelo/Cherokee (lineage adopted around the time of Removal), which explained a lot of minor differences which have passed down. (Along with the fact that the common portrait of Sequoyah looks disconcertingly like my Papaw in a turban.) No, that does not make me feel somehow deeply Cherokee, but increases interest levels. Less relevant, but I just found out last night that my paternal-line Tacketts (NC-->KY) had probably been harder to pin down because they started out Tahquettes. *smacks forehead*
urocyon: (water)
I haven't been in front of the keyboard much in a while--mostly haven't felt like it, being sick and tired from (and of) the metformin. Yesterday was pretty bad, but today seems to be making up for it. Thank goodness things frequently work out that way.

Yesterday I was thoroughly fed up, and finally thought to try to find more info on side effects. (Don't know why I hadn't done this before, possibly out of "this will surely go away soon" denial.) Apparently, it's not at all unusual for GI symptoms to continue, no matter what pharmaceutical reps have the doctors believe. (Medscape is erratic in wanting a login, so here's a saved version.) This is not too surprising, considering how it works on the GI system--that certainly explains why the symptoms kick in within half an hour of taking the stuff. That's even without all the anecdotal evidence. Judging by other people's experiences, the lightheadedness, dizziness, and headaches are probably more direct side effects, rather than the hypoglycemic symptoms I started out assuming. It also seems that the fatigue, brain fog, general lack of energy, and some muscular pains are likely coming from B vitamin depletion--and my stores of some were just getting reestablished, from the celiac. Pretty much the same reason in both cases, but it hadn't occurred to me; maybe I should blame the brain fog. :)

On the brighter side, I did run across a lot of tips for making the side effects liveable, mainly from one PCOS forum. Some of the eating advice I'd figured out already. I'd discovered that I do need to eat every couple of hours, in small quantities, and make sure I eat something before I even finish my coffee in the morning (particularly fun, since I'm just not hungry for a few hours). If I wait until I'm starting to feel low, that's the rest of the day gone; ditto for eating very much at a time, or much in the way of carbs without tons of fiber, or much not-very-saturated fat. Yesterday, I think I got so sick from (a) waiting a couple of hours to eat, while carrying buckets of fish water in the meantime, and (b) extending some leftover goulash with too much pasta. I was glad to see some other tips on food timing and content, including taking the pills in the middle of the meal and preferably with some milk or yogurt too (if the lactose content isn't enough sugar to cause a problem). I'm seeing an awful lot of veggies and fruits--which the metformin hasn't hated, so far--in the near future, and I already tend to consume 8+ servings. I'm also going to try harder to remember to take a B complex, and hope that some of it gets absorbed, along with the magnesium supplement on top of all the legumes we've been eating lately.

As a side note, the advice I ran across--along with personal experience--makes me very glad indeed that I knew enough not to follow the diet recommended by the NHS. Besides throwing in lots of outdated "eggs are horrible, don't eat nuts, margarine is great" cholesterol-lowering advice, the handouts I got made absolutely no distinction between Type 1 and Type 2. If I were being "good" by their definition, and eating even more starchy carbs than the food pyramid suggests, I'd be about dead from the meds before now--and wondering why it was happening, in spite of my "goodness". It's particularly inappropriate, given that metformin is the most prescribed drug for Type 2, with its method of action. I only wish I were surprised at the quality of advice. :/ Unfortunately, a lot of people seem to have more trust in medical professionals, and don't do much if any research for themselves.

The metformin hasn't been very fun so far, but it still looks like the best option. Something that actually reduces the insulin resistance, rather than pumping more insulin into a wonky system, makes a lot more sense. Just seeing some assurance that things can be managed so that the effects are tolerable has given me more hope. Knowing that there's something, short of going off the meds, that I can do to help the complete lack of energy is particularly welcome. With any luck, quality of life will be looking up before too long.

That reminds me, I really do need to get over my phone phobia* long enough to call for a remedial massage appointment. The knotted up shoulder and chest muscles from that job have proven a more lingering and aggravating problem than the lower back injury. It keeps feeling like I've been trying to fly, with implausible angel-type wings, attached behind my arms. Wearing a bra really aggravates this, since I could tell at the time that doing such strenuous, repetitive work with restricted/awkward movements from a bra was causing a lot of the problem. They're unpleasant enough, at the best of times, but I'm still not entirely comfortable bucking that particular deranged social mandate. Some sports massage from someone who knows what they're doing should work wonders, though, so I really ought to make myself get on the phone soon.

* I'm still wondering about the feasibility of using TTY and/or relay; just the CAPD, which helps make me nervous since I can't understand the other end of the conversation at least half the time, constitutes a legitimate reason. The little television/DVDs I watch have been so much more enjoyable since it occurred to me to turn on the closed captioning.

September 2011

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