Posts Tagged ‘myalgic encephalomyelitis’

People in the world doing good things I can’t quite do yet

Friday, November 15th, 2013

There are a lot of articles out there about ME.  This is one that expresses some of the surrounding issues well.

Jennifer Brea on TED

Maybe it explains why I often sound more frustrated here these days than I used to.  Maybe it explains why cream-filled cookies don’t actually contain any dairy.  You’ll never know unless you read it.

(Thanks to Elizabeth Milo for bringing it to my attention).

Moving my shoulders, ever so slightly

Wednesday, November 6th, 2013

Things aren’t usually vividly hard anymore.  I’m generally careful to judge everything by where I was at my lowest, which can turn even the most limited of days into hope.  That worst year or so was so truly, completely awful that anything that isn’t that becomes cause for celebration.   Walking to the bathroom without trouble, and without having to call my husband in to help me back up?  That is beautiful.  Setting aside the timer that used to ring periodically so someone else could roll me over to prevent bedsores…  These things give me reason to believe that life will be better for me someday, and that’s precious.  It might not.  I acknowledge that my hope comes from a place of determination and desire rather than statistics.  This illness is more often a roller coaster than a ski lift.  But it’s enough.

I don’t often break out in tears anymore, actively mourning for the things that I’ve lost.  Early on there were so many times where I was faced vividly with such a new and completely intolerable set of limitations that it would take a moment just to get through the realization.  I wanted to go outside, and I couldn’t.  I wanted to have a snack, and I couldn’t.  Being reliant on other people for such basic things was a brutal adjustment, and it got to me sometimes.  The big things were hard (career, kids, vacations, goals, life plan), but in some ways the little things were even harder.  More immediate.  And at that time, the journey was generally downward.  I had no idea whether I would be so trapped forever.  My condition was very severe, and many people who get so low do not come back from it.  Every day was worse than the last, and that’s a very difficult place to feel anything but lost.

I tend not to have those overcome moments anymore.  Maybe there just aren’t that many new surprises to catch me off guard.  They say that human moods are all about reaction to change, and I can see that holding true.  If your current situation is better than it was recently, then you’re happy.  If it’s worse, you’re upset.  But after a while of anything holding steady, we go back to our baseline.  Lottery winners get sad again, and people in poverty smile.  The things that used to be so striking to me and served as vivid reminders of my lack of independence go mostly unnoticed now.  I live on the couch.  I don’t cook my own meals.  I don’t wash my own hair.  I don’t have many of the things that used to define my life.  But it doesn’t stand out to me unless something draws my attention to it.  Holidays and special occasions are difficult, because it’s almost impossible not to make comparisons to healthy years (someone else recently wrote a lovely post on this.  I don’t know why it always surprises me how universal these feelings are, but hearing my own thoughts articulated by person after person still always strikes me somehow.), and now and then something will pop up and remind me this is not the life I expected.   But in the day to day, if I can keep my thoughts confined to my own current reality, it’s not as bad as one might think.

But there are still days where things are more quietly difficult.  Days where I hear a bit of a song I like in the background to one of my snippets of TV viewing, and I want to track it down and buy it, and am daunted by realizing how many years it’s been since I purchased a song.  Days where I realize that I can’t actually listen to it more than a few times, because my head hates that sort of thing more than just about anything else.  Days when it saddens me how silent my world has become.  Days that I’m reminded of how central music used to be to my life, and of iTunes playlists and car radios and music degrees and singing and dancing and musicals and being on stage.  Days when I think about how central music is to self-expression and it feels like losing a piece of my identity instead of just a song.  Days when I sit for a moment and imagine myself dancing.   And my heart aches for a minute with how badly I want more than that.

I still feel my limitations deeply.  I’ve just gotten good at looking away.

I imagine him or her to be an independently contracting monkey rather than one with a master of some sort.

Monday, September 23rd, 2013

The rubbery layer around my heart rate monitor watch face came apart a while back, and we haven’t yet gotten around to trying to glue it back together.   I’m not sure that I can blame the watch, really, because I suspect the magnesium spray that eats up my muscle aches and twitches may have eaten that away as well.

As a result, I now look down at my empty wrist expectantly several times a day.  I’m thinking I should probably just write a time on there with magic marker and be done with it.

I’ve not been particularly well of late, which was probably obvious by my absence here.  It’s a tough thing to get anything accomplished with only an hour or so of truly functional active mental time per week.  Makes for a lot of tough decisions on where to spend efforts, and a lot of frustration on where not to.  People send me lovely e-mails, and I read them, and appreciate them deeply, and then leave them sitting un-replied-to in my inbox.  That breaks my heart a little sometimes.   Appointments go unscheduled.  Phone calls go unmade.  Pills I’m not sure I want to take anymore continue to be taken simply because I don’t have the energy to firmly decide not to.  Sometimes I try to prioritize what needs doing, but that takes up all my effort and then by the time I can tackle the first item my needs have often changed.  My to-do list grows exponentially faster than I can clear it.

Sometimes my mother calls, and I speak to her briefly and then have to reschedule everything else I thought I was doing that day instead.  Sometimes I feel the desire to Say Something On the Internet, and everything else is a write off for another week or two.  Many times I end up sucked into things that are largely irrelevant – the energy equivalent of paying a monkey five dollars to dance around for me, then realizing five dollars was all the money I had to get home.  But I won’t say that I always regret the dancing monkeys.  Sometimes a person needs that sort of thing.

Besides, it’s not like I’ve got anywhere else to be.

I don’t even know what time it is.

Requisite Cliff-Hanger Update

Thursday, June 6th, 2013

Turned out husband had appendicitis.

Terrible dehydration because he didn’t drink anything the night he spent in pain and confusion, then wasn’t allowed to eat or drink anything the full day while they were diagnosing him, and the full night after his surgery he couldn’t have anything either, which means more than 36 hours with nothing at all.

Had some mild complications after coming home after surgery, including a post-operative fever of 104 degrees that led to a trip back to the hospital by ambulance and another hospital stay for some IV antibiotics.

Finally made it home for good, and two of his ribs popped out a bit from his spine, sending his whole back into spasm.  Was super painful, and is still lingering.  Probably something to do with either drug-induced heavy sleeping, or contorting in a waiting room chair, or something his muscles did while he was convulsing from the fever or curled up in pain from the appendix.  Not fun.

Many, many, many nights without sleep for both of us, but he is now kind of sort of getting better.

I am hanging in there as well as I can with no sleep and tons of stress (neither of which are good for keeping this illness at bay).  But I’ve been the full-time caregiver in this house for the past week.  Am doing WAY better than I might have guessed (thank you, Equilibrant!), but I won’t say there wasn’t a point this past weekend where I was literally crying because my husband needed pillows under his legs to take the strain off his surgery site, and I realized they were all the way at the other end of the hall.  And I was lying on the floor, because my legs just would not carry me anymore no matter how hard I pushed.

It’s been a long time since I’ve reached that point.  But this time, thankfully, I recovered some eventually, and it didn’t become my new normal.  I’m resting every second I can, and not doing much else besides sleeping and fetching meals, but I’m getting through it, and I’m reasonably certain that I won’t have any major lasting damage as a result if all keeps going as it has been.  Of course, there’s no guarantee and very little predictability with this illness, but I’m hopeful that I should bounce back.

I have to bounce back.

Please, please let me bounce back.

But he is okay, and home, and safe, and that’s the most important thing by far.

I’m pretty sure only one of those would notice it’s pi day today

Thursday, March 14th, 2013

We got a bar fridge for beside the couch! Which, I believe, means that I am now either officially disabled or an alcoholic. Probably the former, since mine is mostly filled with coconut water and probiotics, and I’m pretty sure that makes one heck of a nasty-ass cocktail.

No offense intended to perfectly normal people with perfectly normal bar fridges next to their perfectly normal sofas. I’m sure there was a very good reason for that.

At any rate, it’s a nice sleek black and chrome model rather than the old school plasticy white that I was expecting. Nice. I know details may not be particularly thrilling for you, but hey, this is the most excitement I’ve had in ages. Plus, I haven’t had a significant piece of machinery just for me since the day we sold my car. I may occasionally slip in there and make soft vrooming noises.

(It’s got great A/C. Probably should have sprung for the leather interior, though.)

…Do they make fridges with leather interiors? Now I’m thinking they probably do, somewhere. For just that special kind of individual.

Anyway, this should make it a little easier on us when my husband has to be away for the day and the walk to the fridge isn’t treating me so well. And it’ll let me have access to my own juice, water, etc. so I don’t have to ask him all the time or leave it out at room temperature for more hours than I probably want to admit. You’d be amazed how important those little scraps of independence can be.

Plus, I got to watch my husband moving heavy objects. Which is worth it in its own way. Though I made sure to reassure him that I like him for his brains.

…Which makes me either a nerd or a zombie, I think.

Pass My Silver Jumpsuit

Tuesday, February 19th, 2013

So apparently I almost certainly have Cat Scratch Fever. And apparently my level is off-the-charts high and I may have had it for a really, really long time. It can cause fatigue, headache, sore throat, swollen glands, and such. As my doctor asked me about contact with felines, I asked him what this find meant for me. I was away at school when I had my first crash of what at the time was called “mystery illness” and I now call ME, and at that time I hadn’t been in contact with any cats at all. Did he think this could be responsible for my condition? He sort of laughed and said that, no, I have this in addition to whatever else is wrong with me. Joy.

As a side note, I can’t even type Cat Scratch Fever with a straight face. It sounds like I’ve gone into heat. Or like a dance craze or something. They might as well have told me I had Saturday Night Fever instead.

On the down side, something clearly weird is probably going on with my immune system, given that most people clear this up all on their own within a month or two. On the plus side, the right antibiotics should get rid of the infection with or without my body’s assistance, which could result in some mystery amount of improvement in some of the related symptoms. I’m trying not to get my hopes up too high, but surely carrying around an active bacterial infection for years has got to take a toll, right? Or at least, not carrying around an active bacterial infection has got to feel better. What if they give me antibiotics and suddenly I’m 60% improved?? Or 20% improved? Or the same, except with an intoxicating banana aroma that follows me around?

It’s been a bit of a confidence shaker, though. I’ve often joked that I’ll be totally screwed if any serious health complication ever finds me, because I have so many severe symptoms that I’ve long ago stopped even mentioning them. This seems pretty common with ME patients. At the beginning, I would take my concerns to the doctor, but I’ve discovered that most doctors don’t like investigating symptoms once you pass a certain number. A mystery number. The Crazy Number. So it’s okay to have one, or two, or three debilitating symptoms, but once you reach the Crazy Number, they all just get lumped into one basket and nothing ever gets investigated again.

It would be nice to feel like somebody would look into the major ones, just in case. I’m sure I still might keep the less severe but doubly strange ones to myself. Crazy Number or not, I’m sure some of them would sound a little nuts. Generally I find just about all of my symptoms nuts, and I’m the one living through them. Hours and hours of daily hic-ups for a month straight for no reason, body? Really? Now you’re just trying to mess with me.

Anyway, I have severe mystery ripping pains, and severe nausea, and severe chills, and severe vertigo, and severe you-name-it very frequently. And not in a nice, predictable way where I can get used to what to expect and easily identify anything new. It’s raging night sweats one week and then horrible sudden chest pains the next. I’ve accepted that my body apparently does strange things for a long time now. It’s so common for me to involuntarily cry out in pain in our house that my husband barely even looks up anymore when it happens. We’ve adjusted, and go on with life as we’re able. And none of it even gets mentioned to my doctors.

The point being that every month something happens to me that feels like a crisis easily worthy of the emergency room. And I brush off every one. If ever my appendix burst, or I had a heart attack, or I picked up a touch of leprosy, or my intestines tied themselves into balloon poodles, I would be at home, calmly trying to go on about my business, or waiting in a heap on the floor for it to pass.

Because agony, or nausea, or shaking, or weakness, or chills, or skin that falls off, or bloating in the shape of balloon poodles is a part of my normal life. Plus, really, if I went to the ER for everything that felt worthy of the ER, I’d be there constantly. And I’m sure that the same doctors who would reprimand me for letting such severe symptoms go on without seeking medical treatment would roll their eyes if I came in to tell them about them now.

But finding out I have an ongoing infection is a reminder that other things can still happen to me, and that I will be totally blind to the symptoms of anything that does. It will have the chance to do it’s thing unhindered for ages and ages before anybody notices something wrong.

And that’s a damned unpleasant thing to be reminded of.

Good thing I’m immortal.

[Note: I may not actually be immortal. I think that may have passed after my teenage years. ...But I also no longer wear a walkman. Fair trade.]

[...Not that I wore a walkman, like, all the time or anything. Just at the appropriate moments. I don't want to colour that into your mental picture of my high school years. But still. Any walkman is too much walkman.]

Super Happy Fun Time Flu Extreme

Wednesday, January 30th, 2013

This is very good.  A tad slow leading up to after the two minute mark, but well worth it.  Once he gets into the details of his experience, I think he’s done an excellent job of bringing across some of what it’s like those first months.  I can see so much of my own journey in what he’s said.

I always hesitate a little before any kind of updates on illness-related things, because in addition to seeming potentially…um…less than enthralling…I feel like it always comes with the risk of having people assume that I’m somehow attention-seeking.  And I don’t want that.  But at the same time, 1. there really isn’t a whole lot of excitement to choose from around here these days, and 2. I have a strong drive to share at least pieces of my story and in some tiny way help to spread awareness and understanding about an illness that is so very often misunderstood.  In reality, I probably shouldn’t worry about it since those people are already too distracted by the fact that I’ve just started two sentences with conjunctions.

Apologies for the giant gaps in posting.  There hasn’t been a whole lot of extra energy to spare, and generally when I do pull the laptop over to try to compose a post, my brain offers up something to the effect of “uuuuuuuuuuuunh,”  or occasionally “bees?”  Not a particular fountain of creativity over here.  It’s been a bit of a rough few months here physically, including a lot of testing, car travel to appointments, the aftermath of each of those, and a business trip that my husband couldn’t get out of.  How much does it suck having your husband leave for a two week trip and realizing that you are not at all capable of taking care of yourself for that time, you ask?  A lot.  On the plus side, the experience allowed me to discover a new sliver of pride that I did not know I had left at this point.  On the down side, I ate it.  Nom nom pride.

In more recent news, I have just started Equilibrant, which the ME folks reading will know means that I’m probably feeling like crap right now with start-up effects.  And they’d be right.  But I need to do something more, and immune modulators and antivirals seem like the best shot for me right now given my most prominent symptoms and blood work results, and this one is often prescribed by some of the specialists in the field whose judgement I trust.  Plus, there’s a slim chance that Equilibrant in particular may also do something for the ravening puffer demons that have taken up residence in my gut.  I’m not sure what a puffer demon is exactly, but I suspect it is something like a puffer fish, except larger.  And more ornery.  And made of burning.  Anyway, I am cautiously hopeful about it.

So right now I’m living through the Ultra Flu Extreme (as opposed to the regular Flu Extreme that I normally carry around these days).  The Ultra version doesn’t come with leather seats, but it does have a promising “chills and shaking” package, so that’s something.  My body is known to be pretty sensitive to medications/supplements/foods/existing, so I’ve been started off with just a quarter of a pill, which was most definitely the right call for me since that tiny piece has floored me like a ton of bricks.  I’ve discovered that extreme illness is much like pain in that we tend to forget later just how bad it can get (Bad.  It can get quite bad).  I’m sure those of you who caught the regular flu this year can sympathize with that.  The manufacturer mentions that dosing can begin with one pill and sometimes go up to a maximum of six pills per day.  My quarter pill and I laughed and laughed and laughed together reading that, and then lay back down in a whimpering heap of painful exhaustion from all that laughing.  But the pill still seemed in fairly good spirits about it, particularly when you consider that he was about to be eaten.  I’m currently aiming for a dose of one or maybe two pills in some distant eventual time.

Until then, I’m back to struggling to get up the single step from my living room, sometimes needing to take the wheelchair to get down my hall to the bathroom, and getting that horrible creeping burning agony along my spine and up into my head when I try to read or type things.  Things like final paragraphs on posts one has been slowly plugging away at, made of sentences very much like these.


Wednesday, January 2nd, 2013

Listening to things is generally hard on me since the Hell Crash in 2011.   I remember initially realizing that I might be stuck lying in bed for a really long time, and investing in a bunch of guided meditation and guided relaxation CD’s, a couple of audio books, etc.  I might be bed ridden, but damned if I wasn’t also going to be the most zen, well-adjusted person on the planet and also fluent in German.  But it became quickly apparent that listening is taxing.  Unexpectedly taxing.  Somehow more taxing than something that combines both sound and visuals.

(No, I have no idea why.  Maybe I normally use visual cues to piece things together and save brainpower since my hearing kind of stinks (which it does), or maybe imagining a picture in my head is a step harder than having it provided for me?  Maybe once the visuals go off my audio processors zone out and get distracted, and then have to quickly scramble to come up with some kind of creative plausible lie when my brain comes asking what they’ve heard?  I don’t know.)

At any rate, I don’t listen to music anymore.  Music is a sure-fire path to the delightful head/spine protest that I like to call “brainfire.”  I opened up my iTunes this Christmas to attempt a half hour of festive music, and realized that I hadn’t touched it in almost two years.  I didn’t even remember that some of the songs listed there existed.

Likewise, the radio is never on when I’m in the car.  My husband listens to it sometimes when he’s driving on his own, but it’s always quiet when I’m in there.  And I’m very rarely out of the house now, so I tend not to be exposed to radio or background music in stores, etc.

I tend to skip over videos on my Facebook feed, because they’re generally too straining to be worth it.

Very recently, I found myself in a waiting room with music playing and something dawned on me suddenly, and I was so awestruck by how profound that statement was that I couldn’t believe I hadn’t realized it sooner.  Earth shaking.  Really (not really).

I have been out of touch with popular music so long that there will be songs that are so overplayed that everyone on the planet is sick to death of them, and I will NEVER HAVE HEARD THEM EVER.  *gasp*

If this had happened years ago, I might never have known what Achy Breaky Heart was, or wouldn’t recognize the name Brittany Spears.  There will be whole fleets of artists that everyone hates, and I won’t even know to hate them.  Clearly I’m missing out.

On a sincere side, it’s a weird statement on how cut off I am now from the “normal” world.

I still sometimes wander the internet, though, so I’ve seen a few jokes and memes and wordplay going around.

So today, in honour of the start of 2013, I went to YouTube and I listened to Call Me Maybe, and Gangnam Style.  For the very first time.

And I am so out of touch that I’m not even entirely certain those were appropriate selections.

Schrodinger’s Junk Mail

Monday, October 15th, 2012

There is a point with this illness where one realizes one should not at all be driving.  Unfortunately, one often realizes this in the middle of a road somewhere going very, very fast.

I haven’t driven a car since March or April of last year.

I can remember what I believe to be one of the last times I drove more than a tiny distance (it may have been the very last time, but I can’t recall for sure and don’t want to inadvertently misrepresent myself by making false claims.  …Because everything on the internet is true). It’s a difficult thing to sum up “brain fog” for people who have never experienced it, and the mild form and intense form vary greatly in their effects.  Let’s just say that my ability to multitask was severely limited, holding multiple pieces of information in my head at one time was nearly impossible, and that my mind now had a tendency to skip over certain things that would once have been obvious or cut out pieces of basic information once it got too overworked. I think it chooses to call this “increased efficiency.”  I choose to call it “why the fuck am I holding a carrot and empty sunglass frames?”

You can see how this would be great for driving.

Anyway, I was driving along on my way to a medical appointment, on a street where the posted speed limit was 80km/hr (so I was going exactly 80.0 km/hr.  Everything on the internet is true). I was low on gas, and had almost passed the gas station when I remembered that I was supposed to stop.  But I hadn’t quite passed it.  So I turned the car into the driveway.

Without realizing that I would have had to slow the car down first.

I can remember the giant black skid marks I left as I careened around that corner, barely in control of the car.  I remember the horrible, horrible screeching noise the tires made on the pavement.  I remember feeling as if a hundred eyes must be looking at my car in disbelief.  It was way beyond “slow down, you douchebag” and well into the territory of “what the fuck is wrong with that person are they having a seizure I think they must be.  …Or they’re seven.”  I pulled over in the gas station parking lot in shock, with my hands shaking terribly, wanting to disappear into the seat so that nobody would be tempted to interact with me, replaying over and over in my head that I really did just screech into that driveway at [exactly 80 km/hr and not a km faster] and thanking God and chance and anything else up there that there hadn’t been any more serious consequences and that I managed to successfully hit the open driveway rather than anything beside it.  It happened completely out of nowhere.  It was so fast.  And so totally crazy.  You get so used to being able to process split second information that you just never consider that ability might not be there when you need it.  Completely surreal.

That is the day that I realized I should not drive anymore.

I did drive again, mind you, and if it wasn’t a long trip, it definitely also stands out in memory.

I used to take long walks around my neighbourhood in the time that I was unable to work, but still not yet housebound.  Eventually my symptoms got so bad that I wasn’t able to walk that far anymore, and instead I would just walk to my mailbox at the end of our street.

To fully understand this story, I have to interject here that I love getting the mail.  LOVE it.  Even when what I have reason to expect is not exciting.  Even when I do not have reason to expect anything at all.  It’s like Christmas every morning, filled with vast and uncharted possibilities and the wonder of discovery.  Approaching that box is like Schrodinger’s paradox, except with the potential of postal surprises and fewer dead cats.

My husband thinks I’m possibly a little bit crazy in this.  I just love surprises.  Even the surprise of nothing at all.  But that man can pick up a package that is clearly an unknown birthday gift, not tear it apart in the post office parking lot, bring it all the way home, and then leave it untouched on the dining room table for days. …Or at least, I suspect that is the case.  After an hour or two, my own curiosity-by-proxy becomes so overwhelming that I end up hounding him into opening it on the spot.  Point being, he may or may not be human.

This is the same reason I never ever let the phone go to the answering machine if I can help it.  I will engage in some serious triathlete-worthy gymnastics to get to a phone in time if it happens to ring at an inopportune moment.  True, the telemarketing people selling windows and doors have called here at this time every night for the last three weeks in a row.  …But what if it’s something special??? What if it’s the Prime Minister, or a marching band, or people selling shutters and vents?

At any rate, checking the mail is a great source of joy in my life.

Eventually the decline of my physical functioning left me with the harsh reality that I was just not well enough to walk even to the mailbox anymore.  I had tried in previous weeks, and I had failed, struggling to get back home with leg muscles that were no longer responding and breathing like I had only one lung and a large load of coal on my back (and with some pretty awful payback the next days).  This was at the stage where I was just starting to not really be able to get out of a horizontal position much.  But I love checking the mail.  And as I recall this particular day, I was even expecting a package.  A package!  Full of totally unexciting things!  Things that could have been in my mailbox at that very moment.

I had decided that I could not get the package.  Clearly, I could not get the package.  But it was right there… But I could not get the package.

And then I looked at my car.

And I looked at the mailbox.

And I looked at my car.

And I thought, okay, I have reached an all time low.  But I am not above that.  I am totally going to get in my car and drive it the embarrassingly short distance to the end of this street, and check my mail.

And so I got in my car, and I drove it the embarrassingly short distance to the end of my street, and I checked my mail.  And I was partly triumphant, but mostly just really not feeling well.

I will remember the drive back forever, probably.  I can vividly recall being halfway down the street.  I knew with no doubt at all at this point that trying to sit upright that long had been a Truly Terrible Idea, and I had this litany going over and over in my head while I drove, “Please don’t pass out.  Please don’t pass out.  Please don’t pass out,”  as I watched my house getting (so slowly!) closer, with my head getting hazier and hazier and my vision getting foggy, and prayed by some miracle that I would be able to make it all the way back.

I remember it going through my head how ridiculous it would seem when people found me, metres away from my driveway, passed out in my car with a triumphant wad of junk mail on the seat beside me.  I remember hoping that it wouldn’t take until after work hours for somebody to realize I was there since it was still only early afternoon, and hoping that I would be able to fall sort of flat if I did lose consciousness, since staying propped up seemed like it was likely to be detrimental.  I wondered if my husband would be worried when he called me after work and nobody answered (because I always get the phone).

I did make it home, but barely.  And I lay stranded on the floor of my entry way for a very long time, face to the floor mat, before I was able to get myself up the half flight of stairs that leads into the rest of our house.

I have not driven since. We sold my car later that year.

As I recall it now, the delivery I was expecting hadn’t even arrived yet, so there were no packages for me to pick up that day.  But there will be in the future. And if determination can do anything, then someday I will be well enough again to get them myself.

Even if some of them are filled with compression stockings.

Everything on the internet is true.

That Woman Really Likes Chard

Friday, October 12th, 2012

Still trying to avoid overactivity, with varying degrees of success.  It’s so hard to find that line of what I can do without triggering really bad problems, particularly since it seems to shift around constantly.

And, of course, the thought of playing it extra safe and just lying here literally doing nothing for the next year and a half sounds…hmmm….what’s the word I’m looking for?  Oh yes – Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.

I recently came across this blog via a comment here, and rather than posting too much today, I’m going to link there instead.  She’s said it all as well as I could anyway.

One minute your life is totally normal, and the next you’re in this completely surreal world where your body feels like it wants to die and just getting to the bathroom is a monumental challenge.  It took me a really long time before I lost the voice in the back of my mind that felt like surely this was not happening.  That surely it was all a nightmare, and any moment I would wake up from it.  It’s amazing how much denial the human brain can try to grip onto when it’s faced with something so sudden.

I think now that there is part of my brain that has forgotten what it is like to not live on a couch.  It is going to be a very surreal experience in itself if ever I can drive again, or go grocery shopping.  I’m going to be standing there in the middle of the produce section, with triumphant tears streaming down my face, and people are going to think I’m really moved by eggplant.

And it is going to be awesome.