this and that

I haven't written in a while.  Things have been pretty much hectic yet boring at the same time.

The hectic part came with getting my daughter ready for Prom and Graduation.  It came and went.

The boring part is, well, every other day.  But I'm working on it.

Now that the warm weather is here, I've had a little more energy, so I've been inspired to do a little more to better my situation.

For one, I've decided to become a support parent with Parent to Parent of New York State, an organization that exists basically to put parents of special needs individuals in touch with one another for support and so we can help each other find services, learn to advocate for our kids, things of that nature.  I have wanted to do something like this for a long time.  I just didn't know how.

For another, I re-did my resume and I now have an interview next week.  Shhh!  I haven't told many people yet!  It's actually not in my normal field, but I've done this type of work before.  It's been too long and I need to be productive and with people and out of the house.

I take little jabs at creativity, too.  Eh.  Not so good so far.

What I really need to do is exercise.  I feel myself getting out of shape.  Badly!  I told Stacy I want a treadmill since I know I won't go on walks.  I've gone on exactly 2 this summer.  I think I just need to find a good deal on a treadmill on craigslist, set it up, and be done with it.

What I also need to do is write more. And read more. Or my brain will rot.  I have been playing games to try to stimulate it, but that's not the same thing.  I am amazed at how short my attention span has gotten being home alone all day.  

I'm still on the fence about driving.  I think I have psyched myself up a little that I can't now, between the physical therapists saying I shouldn't, Stacy being afraid of me driving and me living in an unfamiliar place.  I've got to just swallow that fear and do it.  Or decide if I really shouldn't.  

So, this is all that goes on with me.  A lot of neurosis.  A lot of nothing.  I didn't even mention the constant barraging from "certain people."  Yeah, the same "certain person."  She is who she is.  Hmmm, wonder where the neurosis comes from?

Oh, I went to physical therapy for my neck.  Can I just say holy cow, when a person with fibromyalgia gets a massage it hurts like hell!  I may not be able to continue to go for PT because I may have used up all of my therapy for balance.  They are supposed to look into that and let me know.  

good to know

I met with Stacy on Monday.  but while I was waiting to see her, I asked one of the receptionists how many more visits I had.

I may have explained this before, but with my insurance, I'm entitled to roughly 20 visits.  after that, my therapist can assess me and extend my therapy for roughly 20 more, but that is all that I am entitled to for the entire year, regardless of my medical need. so if I get hit by a truck and then need more physical therapy, apparently, I would be out of luck until a year has passed.  so it is in my best interest to not use up every single one of my physical therapy visits just on balance therapy, just in case.

so, the receptionist told me, "oh, this is visit 20 of 20."

really?  when did they plan on telling me this?  wow.

I felt like someone had pulled the rug out from under me.  I wasn't ready yet.

other times I had gone to physical therapy, I had known in advance when my last day was coming.  I usually brought something in for the therapists as a "thank you" gift, like cookies or something.  one practice awards "graduates" with shirts and other tokens when they have completed their therapy.  this seemed a bit cold.

I had been seeing these people for months.  joking with them.  crying to them.  and now, because of an arbitrary number set by the government, it was suddenly going to be over.  one of my few links to the "outside world."  I know I'm taking this way too hard, but my world is very small, and it was about to become even smaller.

so, Stacy came for me and took me to a treatment room so we could discuss my progress.  she gave me a few questionnaires to fill out, rating scales which measure my confidence and depression levels.

funny thing about that.  since I've studied about these kind of tests and administered them myself, I'm always guessing at what "they" are looking for, and not always what I really feel.  it's a terrible way to be, I know.  but it's like trying to unlearn to read.  you can't do it.  try it.  just try to look at a page of written words without reading them.  yeah, I thought so.

well, I knew that I couldn't seem too depressed and I had to show more confidence than the last time I took these tests and, well, maybe I have progressed somewhat anyway, I don't know.  it's hard to be honest when you are trying to not be honest.

in any case, Stacy was happy with my answers, and that's what matters.  right?

she told me that we will have a few more sessions where we will plan my dismissal.  she'd make sure I was all set with home exercise.

that's when I told her about my little experiment with home exercise.  I was ready for her to tell me it was anxiety again.

instead, she told me that I should get a cardiac workup, that what I described to her sounded cardiac.  I'm not gonna lie; I started crying.  not because I'm worried, but because I felt like an ass.

I don't even know why I felt stupid, though.  I guess because I have let doctors push me around and to the side so long and dismiss me, even when I feel things like this.  well, why shouldn't I?  I let other people do it, too.

I told her I would finally get a physical and go from there.  I also asked her if it would be possible to see the neurologist sooner than the end of June.  actually, I am seeing the nurse practioner and I want to see the doctor.  I didn't think that was unreasonable.  neither did Stacy.  she told me to tell this to the receptionists (p.s., they couldn't find me an appointment with him).  we then had our normal session and I was on my way.

since then, I've made an appointment with my primary care doctor for a physical. I've been exercising some. other than that, business as usual.

disturbing development

so, I'm supposed to be exercising.

I thought I'd do that yesterday, make a real good effort.

I went through my CD's and put in the Scorpion King Soundtrack and started stretching.  so far so good.

then crunches...no problem.  then, I was really getting into it, and decided to do aerobics.

I figured that, in order to avoid vertigo, I would do whatever exercises I used to do standing, while lying down.

made sense to me.

so I started moving my arms and legs around to try to get my heart rate up.

then, it hit me.

a wave of dizziness like I'm not used to.

this was not regular vertigo.  this was different.  like I felt like oxygen was being cut off from my brain.

yes, I know what that feels like.  and it felt like that.

I lay on the floor, waiting for it to pass, wondering what the hell is going on with my body.

why did these motions bring on this particular reaction?

was it the movements of my arms?  or the bringing up of my heart rate?

I had to know.  so I did it again.


after less than a minute, I had the same reaction, only far worse.

I thought for sure someone would find me dead on the floor.

I lay there unable to move for at least a song and a half.  that would be, what, 5, 6 minutes?

I never completely lost consciousness, I don't think.  almost though.

I thought of calling my partner and telling her to come home.  but I figured, why?  what's anyone going to do about this?  I also thought about calling the neurologist but vetoed that idea as well.  I'm going to physical therapy on Monday.  I figure I'll talk to Stacy about it.  hopefully I can get my point across to her about how this went down and she can tell me what to do next.

I have to admit, this has me a little shaken.  I mean, deep down inside, I honestly don't worry about my health because I figure what will be will be but in the end, I just want to get better however;

this now leads me in another direction.

I always figured whatever is "wrong" with me is basically this vertigo crap along with a bunch of arthritis and, yeah, the fibromyalgia, and, while it is all aggravating and tiring and painful, none of it is life-threatening.

but what the hell is THIS??

eating steady

today, I'm trying something "different."

it's really not different, because I've tried it before, but now I'm trying it again with more knowledge.

I'm going super-low-carb in an effort to control my vertigo.  I'm pretty much following Atkins.

this is what I know:

many years ago, while I was engaged to the Evil One, the two of us went on a very low-carb diet, at that time, to lose weight.  We both did...a good amount, too.  But, what was remarkable was that, at the same time, my overall health improved.  smart as I was, I didn't put 2 and 2 together.

see, at the time, I was pretty much bedridden and going to physical therapy to try to learn to walk again after a major vertigo attack.  I couldn't do much else except sleep and drink these high-protein shakes.  after a few months, my balance got better.  I thought it was a miracle.

by the time the Evil One and I got married, I was able to dance at my wedding.  then, like two schmucks, we ate like pigs on our honeymoon.  I remember collapsing in his cousin's yard.  we thought it was from partying a little two hard.  now, looking back, I know it was from my system saying, "hey, what are you doing to me??"  two weeks after we were married, I suffered a worse vertigo attack than the one I'd had that winter.  low-carb to over-carb...my body was in overdrive.  I knew none of that then, though.  I didn't even know it was vertigo, then.  we were still working with the diagnosis of dystonia (and/or "it's all in your head")!

being part of several dizzy/Meniere's/balance disorders support groups has led me to learn that my blood sugar directly affects my balance problems. this is significant information to know.  for so many reasons.  for example:
1. I should not go without eating.  I already know that I am hypoglycemic; I found that out like 20 some-odd years ago.  so, since my blood sugar tends to get on the low side all by itself, it does not need help from me not eating properly.  that's just plain idiotic.
2. stress does have an effect on my balance disorder.  why?  because stress affects your adrenals which, in turn, affects your insulin production which, in turn, affects your blood sugar.  diabetics, take note...stress affects you, too, in a very similar way!
3. other things I put into my body also affect my balance disorder.  one of them is medication.  another is cigarettes.  one I can't do anything about.  the other...well...let me get the diet thing going first and I'll get back to that one.  it's hard to give up smoking when you live with a smoker.  however, being less dizzy is a good incentive, so...
4. if I lose weight, I will be less dizzy.  why? because my body will function more properly; therefore, my organs will work the way they should.  also, my hormones will be at a more stable level.  so, that brings me back to the topic of today.

I absolutely, positively hate thinking about food.  hard to believe, considering my weight, but it's true.  the Nurse Practitioner said it is probably due to the medications I take.  but, get this, because I actually eat very little, my body holds onto the food I do eat like it's in starvation mode because it doesn't know when it's getting its next food, so, even though I don't actually eat enough to justify my round shape, I maintain it because I have done a fabulous job of messing up my metabolism.  that, and the fact that I don't expend enough calories to boot.

so, I also need to exercise more.  I'm working on that one, too.  it's very hard to stay motivated all alone.

working my eyes

I had my first session of vision therapy yesterday.

I'm not sure how I feel about it.

it's weird.  it's hard.  it's fun.  it's frustrating.

the doctor asks me if I see things in 3D.  I'm not sure if I do or not.

my crossed eye has fascinated eye doctors for years.  why?  it's just a weird-looking eye.  yet, every time doctors see it, they want to play with it.  they want to see if I can see this or that.  if I have single binocular vision (I do not).  how my depth perception is (horrible).  if both eyes can see (yes).

who knew that something so annoying and inconvenient and ugly as a crossed eye could be so interesting?

(I've had people tell me it's attractive, if you could believe that!  I don't get it, either...)

I look at lights and letters and numbers and beads.

one eye covered.  both eyes together.  with prisms.  with 3D glasses.

he brought up surgery again.  I listened with 1/8th of an ear.  not really interested.  he said it wouldn't be to straighten my eye all the way, anyway, but just some of the way.  so, um, no.

I got exercises to do at home.  and a nifty clip-on patch for my glasses.

recovering is hard work.  I feel like it's going to take forever.  for something that may happen.

guess it's better than not doing anything, though.

sensitivity

yesterday, I worked a lot on VOR exercises (vestibulo-ocular reflex) in therapy.  they are, basically, the ones to stimulate the vestibular system in order for me to do everyday things.  for example, walking down a hallway while turning my head to simulate, well, walking anywhere while turning my head, but this is exaggerated and done over and over again.  I think I walked down the same hallway yesterday 20 times looking up, down, side-to-side and diagonally.  some of the motions made me more dizzy than others.  usually the up-and-down seems to get me.


I read in someone else's blog about something called cervical vertigo.  basically, this is vertigo caused by a compression of the nerves in your neck.  it got me wondering if this is, possibly, the cause of my vertigo.  I have been in physical therapy several times before for arthritis and this can be one of the causes.  also, I seem to have vertigo more when I move my head in certain positions than in others.  I don't know.  something to keep in my back pocket...


anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion.  I do all of these pretty well, now.  it's afterward that I may or may not have a problem.  still.  but this is progress, they tell me.  I'm doing better than when I started.  my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress?  it's scary.  because then things happen like the following:


I go on the treadmill, as I have been doing for weeks.  I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me.  she has me gradually work up to the speed she wants me to walk at.  1.3, no problem.  1.5, trotting along.  1.7 this is cake.  then she hits 1.9.  this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle.  immediately, I go into "overload mode."  my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting.  I start holding my breath involuntarily.  I am still walking the treadmill, but I start wondering if I am going to pass out right there.  my normal therapist sees this and asks if I am all right.  I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right."  she reminds me to breathe and focus and comes over to lower the speed on the treadmill.  as soon as she does, the noise goes away and my body immediately relaxes.  an assistant is with her.  Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise.  before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice.  What?


Stacy had  to go back to work with her patient a moment, and the assistant had gone with her.  I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy).  did she actually say that?  it was just a bizarre question...

when Stacy came back to check on me, I had to tell her, "I'm better now.  the sound apparently set me off or something.  she," making crazy eyes at the assistant, "thought I was afraid of the noise."  


while Stacy and Lauren (the therapist I am working with) talked about how the machine probably needs to be serviced, and that's where the noise came from, I didn't get the validation I had hoped for, like, "wow, what a crazy-assed, stupid, ignorant, uninformed, jerky, dumbass response to someone who has neurological responses to vertigo! I'm sorry you had to deal with that.  I'll let her know."  or something to that effect.


maybe I'm a little sensitive.  


maybe it's just that from working with and for people my whole life, I am hyper-aware of what comes out of my mouth at all times when dealing with people at all times.  I remember that they all have a story, a life, feelings, a family.  I don't know why, at this stage of my life, I am still shocked and amazed when other people don't.


and this was nothing.  seriously, nothing.  I know it was nothing.  she was just an idiot.  ok, not an idiot, she just was clueless.  


but, it's the tip of something much, much bigger that I have been holding onto and I am damned near ready to burst.


another post...perhaps another blog...

strength training and inner strength

so now my balance therapy has branched out.

when I go for my vestibular exercise, I get strength training.  it's way harder than I thought it would be.

I squat, I lift dumbbells, I use weight machines, I do resistance exercises.

I need this stuff.

I'm glad I made the decision to ask for this.  even when I am sore.

I'm also glad I made the decision to do this at the same place where I get my balance therapy, even though the orthopedist told me to go to a facility that specializes in arthritis.

fact is, I get dizzy when I work out.  so we have to deal with that.  the other place may or may not have been equipped for that.  besides, doesn't it make sense to have the same therapist track your progress?  and, since my neurologist is treating both my fibromyalgia and my vestibular dysfunction, he can prescribe as much physical therapy as I need.  not have me running all over the place.

when I'm lucky, I also get heat treatments, too.  I say "lucky" because only one therapist seems to give them to me.  not sure why.  I'm not the kind to ask for stuff like that.  I know I'm the patient, and it's my treatment, so I shouldn't feel that way.  but I do.  I feel that it is a luxury, like someone getting a poolside massage.  stupid, I know.

I feel this way about every aspect of my treatment lately...that I am on an extended vacation.  and I know why.

my girlfriend calls it, "people taking my inventory."  everybody does it.  I'm sick of it.  for example, my 9-year-old ASKING ME WHAT I DO ALL DAY!  (seriously??)

I've already mentioned my mom.  she goes in spurts. I'm just waiting til the next one.

I'm the worst offender, though.  because I know I'm not doing as much as I should.  as much as I want to be doing.  and then other people's criticisms ring in my ears and I'm paralyzed.  a self-fulfilling prophecy. I'm trying to work on it in talk therapy, but, until I come to some conclusion, health-wise, I don't know how far I will come.

it is hard for me to make a life for myself at home.  harder still when I get dizzy doing things that used to make me happy, like dancing, or taking long walks or driving.

I'm trying to push myself to do the things I used to do, because I'm unwilling to give up at 44 years old.  I used to live in a black hole.  I'll be damned if I'm falling back inside of there.

yes, for my kids, always for my kids, but for once, a tiny part of me says for ME, too.  (I can't tell you how my stomach churns when I think it...but I'm trying to believe it, anyway)

so, after I write this, I WILL get off the couch and practice SOMETHING.  some b's.  some squats.  play on the Wii.  I MUST motivate myself to move and, as much as I think I can't, I MUST move my head around.  I KNOW it will make me dizzy.  that is the point.  make myself a little dizzy each day and maybe I will be less dizzy someday...

I stay away

I know I should be exercising.

practicing my b's and all that.

but I am at the point where I think it's pointless and all that.

I just got an email in my dizzy support email that said people like me have to do these kinds of exercises every day for the rest of our lives.


really?  I am not feeling it.

because this is not a cure.

it's just bobbing my head around and looking at checkerboards so I'll feel less dizzy some days.


but other days I may fall on the floor.

what a load of crap.

I know I should not feel this way.

I'm just a little frustrated.

I guess because, at this point in my life, I was planning to move on with things, and I'm not.

I had hoped that VRT would be a solution and not just a Band-Aid.

blah.

because I entitled my blog "I stay away" today, I started thinking of this song by Alice In Chains.  This video is just the lyrics.  the first video I found on youtube was quite weird and was about a circus and I don't know what.  it cheered me up a lot, actually, and I'll post it next, if you want to watch it instead...

I liked that one of the lyrics are "I am enlightened..."  I was actually in the middle of writing about that in one of my other blogs.  see you over there.

guess I have to get motivated again...

some concerns

I've been in vestibular therapy for several months now and here's where I'm at.

There are days when I seem to do the exercises pretty well.  And there are days, like yesterday, when a simple walk on the treadmill barely more than ONE MILE PER HOUR can make me go into horrible spins.

It's frustrating and confusing.

As usual, the staff are extremely supportive and encouraging, so that helps.  Still.  I can't help but wonder.  I am going to be among those that cannot be "cured" because it has been too long since the initial damage to my vestibular system?  I know that even if this is true, this time won't have been wasted since I've learned so much here, but I wonder if some day this "truth" will become a "reality."  This scares me.

I also wonder if it is possible that there hasn't been enough done to discover the underlying cause to the dizziness, too, and this frustrates me as well.  We are guessing that the cause is labrynthitis because an ENT said so when I first got sick, but what if HE was wrong?  I mean, does it really make sense that I would remain dizzy all these years from ONE case of labrynthitis?  I can't find much to support that truth.

At the suggestion of the neurologist, I saw the vision therapist.  He decided I would be a good candidate for therapy.  He said it *might* help with the balance issues; it often does in cases like mine.  He actually was very optimistic.  Cautiously optimistic.  I guess he has to be.  There is a lengthy evaluation process, so the therapy won't begin for a while.

I also talked to my "main" physical therapist about adding strength training to my balance therapy.  I also suffer from fibromyalgia and have been having it rough.  I was hesitant about going somewhere else for physical therapy, considering my balance issues.  She thought I was being smart (I did, too!) and said she'd talk with the doctor.

After some hard thinking, I've decided I have to do a couple of things, even though it's kind of "admitting" my state of disability...which...apparently is a bad thing to do.  Anyway, I am in the process of obtaining Medicaid taxi in my area so I can alleviate my partner from having to drive me from appointment to appointment, and so I can make more appointments during the week if I want to.  I also am applying for SCAT (Suffolk County Accessible Transit).  It is a paratransit service that will provide door-to-door pick-up for rides around my county.  I've had this service before; in Florida, and when I lived in Nassau County and, while it is not the ideal way to get around, it can be very helpful and is much more cost-efficient than a taxi.  I also gave my doctor paperwork to fill out to have my student loan forgiven. This was a killer for me.  Since I graduated almost 13 years ago, I think I've been able to work a combined total 4 years...IF that.  What a disaster.  No one plans for things like this.  I certainly didn't.  And now, I keep having my loan put into forbearance and deferment over and over again because I certainly can't make payments while I'm living off of social security disability checks.  Meanwhile, the interest has ballooned my loan to well over $40,000. It may as well be a million.

While these things are, in and of themselves, quite depressing, I'm dealing pretty well most of the time.

I did, however, have to field this conversation with my mother yesterday, and it threw me for a loop:

MOM: "I saw something the other day about domestic violence.  When you are ready to go back to work, I think that would be a good field for you to go into, considering all you have been through..."

ME: "I definitely think I would volunteer in that field, but, considering everything I've had to do for Tara (my adult autistic daughter), I know I that I would go back to what I HAD been doing."

MOM: "What you HAD been doing What? Sitting on your ass?"

Now my stomach tightens.  I see red.  I try not to throw the phone through my glass doors.

ME: "I said what I HAD been doing.  You know perfectly well what I mean.  Working with developmentally disabled individuals.  You know, when you get like this, I don't want to talk with you anymore..."

MOM: "Oh, I didn't hear you..."

ME: "You heard me perfectly well.  You even repeated exactly what I said.  What I HAD been doing.  Not what I HAVE been doing..."

The thing is, my mother sees my not working as a FAILURE of some sort.  Same for my not driving.

It's hard enough for me.  It's absolutely TORTUROUS when I don't have the support of someone so important to me.

Does she think I don't WANT to work?  Does anyone think I WANT to be dizzy?  To have my thoughts scrambled constantly?  To fall out of nowhere?  To be a shadow of my former self?  To be dependent on other people?

I used to be Supermom!  At one time, I worked full-time and went for my Masters degree and was in the Community Choir and volunteered for my Church while raising two kids.

This illness has invaded my head and my body in such a way that I can't think and don't know which way is up.  I don't want this.  AND I AM DOING EVERYTHING IN MY POWER TO TRY AND FIX THIS!

However...it has been so many years, with so many WRONG treatments, WRONG medications and just so much time has passed.  What if it is just too late?

My New "B" and Other Therapeutic Torture

The other day, I was stepped up to a different "B" in therapy.  For those of you who have no idea what I'm talking about, I'll explain (and, hopefully, provide a visual aide if I can figure out this blogging thing right).

You see, when I started balance therapy, among many of the exercises I have to do, one of them is the "dreaded B."  Basically, you're given a point to look at (in this case a letter "B"), and made to do things that normally evoke a dizzy response while focusing on this damned letter.  For example, moving your head from side to side, or up and down.  The basic "B" looks like this:

I had worked on the simple "B" for a while until I, apparently, mastered it, (got less dizzy while working with it), and then I graduated to this "B":

This "B" was supposed to be torturous, apparently.  When different therapists would see what "B" I was working on, they'd say stuff to me like, "Oh, God, poor you."  Or, "That one makes me dizzy."  But, for some reason, it didn't evoke any more of a response from me than a regular "B."  My guess is because of my crossed eye and my inability to see things 3-D like the rest of you people.  Since it's black-and-white, maybe it's not such a challenge for me?  I don't know...

Anyway, so I had my setback, and I went back to the simple "B" for a little while.  I also was working on some "B's on sticks."  Yep, that is just what is sounds like.  

I had to do some eye exercises and tracking with these lovely letters.  The purpose of these exercises were to try to strengthen my eyes, try to get them to work together, try to increase my peripheral vision and also to desensitize my responses to movement.  I am sure I will be doing lots more of this in visual therapy (I go for an evaluation February 6).

So, I saw my regular therapist on Monday and she re-assessed my progress.  She decided I could "graduate" again to this wonderful "B":

Yes, it's a checkerboard.  This one is supposed to be between a regular "B" and the crazy black-and-white one.  But for me this thing's a killer.  I can barely get through my exercises with it.  Hell, I can barely look at it right now on this screen!  It's that disturbing!

So, I do these lovely eye things in addition to any other physical torture they decide I need to endure that day.  It may be the treadmill or the stationary bike (physical exercise is important to everyone, but for us dizzy's, who tend to shy away from it, it is even more so...the benefits are enormous), standing on a wobbly board, walking around cones, balancing myself on a rocking board, standing on a cushion (simulating uneven surface), walking around while turning my head, throwing a ball, and on and on.  

More days than not, I leave there telling my partner, "they beat me up in there."  But I know it's for a reason.  

I laugh and call it  "therapeutic torture".  I'm trying to stay positive because it's the only way to stay out of the pity pot.  And because I feel I owe it to these therapists, to my partner, and especially to my kids and, yeah, to myself, to keep at this and try to get better.

dealing

So I cried yesterday.

It was the first time since I relapsed that I cried.

I decided to unload the dishwasher, this, after I watched my partner run around the house cleaning and doing laundry and preparing food and making the house look semi-decent.

You know, the things I normally do on a daily basis.

It's funny how much we've both come to take those things for granted.  Well, she doesn't take them for granted, she says.  She's very grateful for what I do.  She jokes and says she can't wait for me to get better this time because she can't believe just how much I actually do as a "stay-at-home mom" and a "sick" one at that!

But I felt very guilty just sitting there while she worked around me.  I had to do something.


I figured how bad could the dishwasher be.

For an educated person, I can be pretty stupid sometimes.

Just the act of unloading a dishwasher involves looking down and reaching up at several different levels over and over again.  Stopping.  Sorting.  Looking at different vantage points.  Bringing your head down.  Turning it one way.  Turning it another.  If I were designing a vestibular therapy exercise, in fact, I would set up a mock kitchen and have my patients load and unload a dishwasher.  It's quite a functional exercise.

But I was not in therapy, I was home.  And halfway through unloading, I felt the floor come up to meet me.  I held onto the counter for dear life.  That's when the tears came.

Of course my partner scolded me for getting off the couch.  I told her I wanted to help and cried some more.  Then she scolded me for crying (there are no "pity parties" in my house).  She also reminded me it wasn't good for my little one to see me upset (she's right, of course).

Still, I was almost relieved I cried.  I was beginning to think I was incapable of crying.  Now that it was done and out, I felt like I could deal with this relapse.  I think.

And then I went to balance therapy.  I saw the same guy I saw last time.  He did some eye exercises with me, then went on to a few more challenging things.  He was concerned, and, I don't know, puzzled?  I feel way less puzzled than he about this relapse.  To me, this is standard; I will relapse.  Should I not be while in therapy?

While there, I saw one of my regular therapists, who learned of my relapse.  He was surprised and disappointed.  He also got to see me fall.  Twice.  After the second time, my therapist called it quits for the night.

I tried to keep up a cheerful front during therapy...I don't know, so they don't think I'm panicking or something.  Deep down, where nobody sees, my panic is real.  Not about this particular relapse, but about my condition overall.  About its permanence.  About how much it has stolen from me and how much it will continue to steal from me.

I wonder if anyone will help me for good, or if this is as good as it gets?

vertigo happens

Yesterday's therapy was definitely interesting.  They called in the troops.  (Have I mentioned that I love this place?  I will, about a million times.)

At first they were puzzled at my relapse.  I was doing so well.  Yeah, I've heard that before.  But I knew not to panic this time.  These people taught me that.

These particular therapists were not my "regulars," so I explained how long I'd been at this, and what could possibly be at work here, my new medication, the weather, or just because.  Just because this is the third January in a row this has happened to me.  For no other apparent reason than it being January.  Only this time I've been doing everything to prevent it and it still decided to happen.  So, I guess my vestibular system really, really hates January for some unknown reason.  

The aide knew he couldn't do anything with me, so he called in the assistant who was supposed to be working with me (often at physical therapy establishments, therapists or assistants who work with patients will have aides go through exercises or therapies with patients who are doing well, especially when said therapists or assistants are finishing up with their last patient.  It's common practice.  I have seen this in every establishment I have been to -- sometimes they even employ the services of interns for this purpose).

The assistant came in and evaluated my situation.  He saw I was in a bad way, so he said he'd do a Hallipike maneuver to see if he observed any nystagmus.  He had me sit down with my legs in front of me then dropped me down quick with my head to the left.  As I felt the familiar dizziness come over me, he told me that he did, indeed, see my eyes pulse, or move, or whatever nystagmus looks like.  He had me collect myself and then repeated on the right.  I felt fine and said, "no, this side's ok." Just as the words came out of my lips, the world spun out of control and my eyes started fluttering.  Rolling around in my head like something out of a horror movie is more like it.  I heard his voice from a foggy distance, "what's happening?" and I knew I had to answer or he'd think I was seizuring.  "That's just my body's neurological response," I tried to explain.  I felt like hell.  He had me ride out the dizzy wave and then had me sit up.

He called in someone else, whom I assume was a therapist, and we then worked on eye exercises and head turns, all seated.  This was a far cry from what I had been doing this past few months, but vertigo happens.

My "homework" is simple, back-to-basic seated exercises.  And, yet, they still make me dizzy.  It is what it is.

I had one moment today of "what if?" (what if I never get better?  what if the exercises never work?  what if my condition never improves?  what if I can never go to work?).  My partner said we'll get by.  I love her for that.  I hate that I have to ask.  But, apparently, vertigo is going to keep on happening and happening and happening and...