Archive for the ‘ME/CFS (Chronic Fatigue Syndrome)’ Category

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.

Cat Scratch and Win

Tuesday, February 26th, 2013

We’ve been having some fun around here playing the what if game. It’s just like we used to do in regard to winning a major lottery of some kind. What would we spend the money on first? How would our life change? What would we do with our time? How would things be different without financial worries?

Except now we’re having fun thinking about what if I have a raging bacterial infection! It’s kind of like winning the lottery, right? Plus, way more likely, since we never buy tickets for those things so somebody would have to arrive pretty much dying on our doorstep with the winning numbers or something, and use their very last ounce of strength to call a lawyer and will the ticket to me. It could happen. Maybe they’d be dying of a raging bacterial infection. Double win!

Really it’s kind of a lottery win that somebody discovered my infection in the first place. The symptoms are so badly camouflaged under the core ME stuff that I never ever would have had them checked out. It was pure luck that one of my doctors decided to test for a bunch of viruses and infections just in case. He’s known for doing that, but honestly at the time I thought it was probably a waste of blood.

I know it’s probably unlikely that anything major will change for me based on my latest test results, but it’s fun to think about anyway. What if that was the tipping point that’s made me so very sick for so long? What if it was responsible for all my worst symptoms? What if my ME would still be in remission without it? What if my problem was treatable? What if I took antibiotics and was suddenly normal? What if I could work again??

I can’t tell you how exciting it is just to think about being able to work. I’m not even a person who places high importance on work in my life, but it’s just such a…normal…thing. There would be so many possibilities for me.

My husband realized that I would probably need a car again. It’s been so long since I drove anywhere that didn’t even occur to me. Probably something small and cute, but cute in a reliable way rather than a sports car way. It would probably be safer to wait a while before purchasing it in case the excitement and joy of re-entering the real world results in a car painted bright spring green (which it otherwise might).

We would book tickets to Europe, ASAP. The husband mentioned something about “when he was able to take vacation from work.” I recognize the logic of this, but I would be dying to book them right away. Right. Away. Like, let’s leave tomorrow. Thinking that we might have to take travel off of our life list has been really demoralizing over the last couple of years. That’s one of the first things I’m doing if I’m ever well enough. We’d probably hit Paris first. We went there for our honeymoon and totally fell in love with it. Seems fitting as a return destination to celebrate a fresh start at life.

And I would write a book.
And learn a language.
And play my guitar.
And sing my heart out.
All of the things that I’ve been dying to do while I’ve been cooped up here, but couldn’t. I would do every single one.

And we would go visit friends. So many friends.

And go out to dinner. In a restaurant. A really nice one. Where I would sit. Upright. In a chair. And eat regular food.

And we would have adventures. All kinds of adventures. High ropes courses, and museum crawls, and wine tastings, and dance classes, and yoga retreats, and trampoline lessons, and so many memory-making experiences. Those are the things that fill up my spirit. I would soak up every one.

Maybe I need to think about this stuff more often. It tends to go by the wayside now, because a lot of the time really thinking about these things just makes me acutely aware of how much I’m missing. I spend a lot of time really focused on NOT thinking about any of that. It’s part of how I’ve kept myself together.

But it’s fun to have hope. Real hope. Even if it’s only a sliver. My family doctor’s unfortunately on vacation this week, so I’ll see her as soon as she gets back. The specialist who discovered the infection wants me referred to an infectious disease specialist for a more thorough follow-up, so I’m not sure if I’ll get treatment through my GP or wait for the specialist. I’m trying to keep my real expectations reasonable. I hopefully won’t be too disappointed if it turns out the infection was only a negligible piece of what I’ve been feeling, and that treating it doesn’t actually make me feel any better. Heck, at this point I’m half braced for them to tell me that the readings must be mistaken, or that they’re not going to treat it regardless, and have to fight for it. But it sure would be fun to feel like my life could turn around so quickly.

So in the mean time, we’re rooting for a raging bacterial infection in this house. Full, disabling, systemic infection. Please, please. …Maybe I’ll be lucky.

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.

I’ll take Rabid Consumption for 500, Alex.

Sunday, December 16th, 2012

Had an appointment with the ME/CFS clinic at one of the hospitals downtown.   No information I didn’t already know and no real hope for treatment, but it was amazingly refreshing to talk to a doctor who was actually a specialist in this area.  I liked her.  She knew her stuff.  And she certainly got to see me in pretty rough shape by the end of it.  At the very end of the appointment, I got asked to walk a tightrope line while counting back by sevens, which apparently I’m completely incapable of doing simultaneously now and not all that great at doing one at a time either. My math degree is crying a little.  I’m pretty sure I never officially earned any degrees in walking, but I suspect that if I did they might shed a few tears of shame too.

Hopefully her report to my family doctor will help her feel more confident when interacting with my disability insurance folks. Downside is that I’ve been pretty much out of commission since then, from the combo of riding in the car and the four hours of talking.  We actually sprung for a hotel room beside the hospital so I wouldn’t have to get up early and do both sets of car ride plus the appointment on the same day.  And I gave in to the overwhelming thirst afterward and drank a truly obscene quantity of water and electrolyte beverages (you might not think that water could be obscene, but I assure you that I managed), which seems to have made a sincere difference.  Some before we left, then more in the car, then a pile more again once we got home.  The Australian guidelines for ME mentioned mild overhydration as one of the ways to help prevent or lessen the severity of a crash, and my gut says that there may be something to that (Almost literally my gut.  And my throat.  And my mouth), since I suck down water like a forty-foot-long camel discovering waterfalls for the very first time (this analogy may not actually be as anatomically accurate as I imagine, but my extensive experience with camels leads me to believe the scene would be quite jubilant).

So I’m not as bad off as I could have been, but I still feel overall very much like crap.  Like a truck full of viral research backed over me three times instead of ten.  Back to feeling like my head is slowly setting on fire when I try to type things.  But at the same time bored enough to want to share awkward camel analogies with the world.  That stuff is important.

In related news, there are a few places that it’s great to be while consuming obscene quantities of fluids  (…Or at least, I assume there must be.  I can’t say, truly, that I’ve ever found myself in a particular location thinking “You know… This would be an amazing place to drink a lot of fluids!”  Maybe I just don’t get out enough.).  At any rate, if ever you find yourself on Jeopardy, and the clue is something along the lines of “what is a great place to drink more than 2L of water in a half hour or less”, I’d suggest against answering with “in a car, on the highway, during slow-moving traffic, with no convenient bathrooms nearby!”  …Partially because that’s sort of a weirdly specific answer for Jeopardy, but also because you’d be wrong.

At any rate, if I’m not as visible for the next while, that’s why.  Still here, still thinking all sorts of brilliant things that I’ll never post, and some vaguely interesting ones that I might someday.  Just by necessity focusing on recovery for the time being.  If I don’t check in before then, have a great holiday.

(though you’re still allowed to have a great holiday if I do)

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.

In which I go from uncertainty to limitations to venting to rambling diatribe

Friday, September 28th, 2012

I’m not feeling particularly grace-full at the moment.  I’ll have my emotional grace back tomorrow.  Or maybe a day later on.

I hate being too much of a downer or a whiner here.  But I guess it’s only natural once in a while.  I don’t mind at all when other people are open in blogging about their own struggles.  I actually really like getting those insights into them, and it would never occur to me to think anything negative about them for it.  I should learn to remember that more.  Sometimes I feel like I can’t tell people the bad stuff.  Some part of me feels like they’ll judge me, ironically even more so since becoming so ill.  People don’t like to hear other people complain.  I worry they’ll be saying “doesn’t she realize how many other people have illnesses too?”  Or think I”m being self-centred.  Or weak.  Or that I’m “giving in” to the illness.  Or assume that I’m just wallowing too much, and that somehow every day of my existence is no longer a struggle.   Or that they’ll be watching to see if I’m going to be one of those strong and positive patients or…that other kind.

It’s funny – when I first started this blog, I titled it Emotional Umbrella, and kept it entirely anonymous, and wrote about all the gory details of things without worrying who was reading them.  Now I’ve made friends through this identity.  And there are people out there who know me as a person and not just as a blogger.  And somehow even though these people are wonderful and accepting, and got to know me by reading all my dirt in the first place, it’s harder now to let the grungy parts show.

But today will be a little bit grungy.

I generally do try very hard to stay positive about things.  I’ve been told I’m doing that remarkably well overall.  I joke, and laugh, and appreciate the good that’s still in my life, and empathize with the many other people going through their own challenges, and look forward to a future with more freedom in it for me. And I try not to look at all the ways in which my life is now less than what I’d hoped it would be.  I do try.

But sometimes this whole situation just feels…really hard.    And sometimes when I least expect it, some of that will come bubbling up, and overflow me, and come streaming down my face for a little while.

I just need to vent today.  There are a lot of things brewing in there that I’ve been trying to ignore.  In some moments, all of this just feels so terribly unfair.  I want my life back.  I so badly want even the tiniest scraps of my life back.  I want to go out for an evening with my husband.  I want to see my friends.  I want to accomplish things with my days.  I want to be useful.  I want to add value.  I want to make my own choices on whether or not to have kids.  I want to leave the house under my own power, and not have other people stare at me, or awkwardly avoid staring at me, or ignore me completely and talk to my husband.  I want to be able to go out without knowing that the people looking at me only see the illness. I want to be able to use a normal fucking wheelchair rather than my monstrosity with its back down and its legs out and its giant giant wheels.  I want to be able to push it my fucking self.  I want to go outside when I want to.

At least I can leave with my husband’s help on rare occasions and for very short periods.  I know that I should be grateful to have that much, and really, I am most of the time.  I know that there are people out there with this who can’t do that much, even if they’re willing to risk payback.  So many people are living their whole life through a window.

I want to be able to handle simple, tiny, trivial things without being run over by a truck for it.  I was wretchedly ill the last couple of days.  Wretchedly ill, like a really bad flu, with swollen glands in my neck, and a super sore throat, and pain in my head and neck, and sweats, and aches, and stomach problems, and that deep exhaustion and weakness and discomfort that comes with any awful virus.  Why?  Because the person who comes normally to give me a bath was off sick this week, and the replacement talked a lot.  The person who comes to give me a bath…triggered intense illness from talking at me.  Putting aside the indignity of the first part for a minute, that second part doesn’t even sound like it should be real. (Seriously??).  And yet it is.  I hate the neurological piece of this.  I hate that thinking and listening and watching and reading have the potential to make me ill, or to take away even what little independence I have left for days or weeks or more.

I want to be able to write things like this without suffering for it.  I want to be able to call someone when I’m upset.  I want to be able to comfort myself with a movie.  I want to distract myself with an outing.  I want to make myself a treat to snack on.  I want to invite somebody over and let the human companionship soothe me.  I do not want to lie here.  I do not want to be alone, and in tears, and without access to any of the things that would once have calmed me. Sometimes that seems like the most unfair.  That the times I most need help and support are the times that I may be doing permanent damage by seeking it out.

I am horribly lonely sometimes.  I miss seeing random people in my day.  I miss my coworkers.  I miss my friends.  A couple of our closest friends have said flat out that they just couldn’t handle it.  One says it just makes her too sad to think about.  They still try to put on a good front for my husband, but they politely put off invitations to come visit including me.  They used to be our closest friends.  They were the ones I would have thought would stick by me.  And now I do not have their support.   They do not call.  They do not write.  Because what’s happened to me is too sad.  And I do not want to admit how bitter that makes me feel on some level.

It’s been a little extra rough lately.  Finding out that the damage could be permanent has been a tough blow, not even just in limiting my potential recovery, but mostly because I can’t justify doing the little things that used to strain my body but help preserve my sanity.  Or when I do, I feel torn up about it. And it makes me SO angry on some level that I was so badly misdiagnosed.  I cringe thinking of all the time I spent pushing through and doing more (even though I KNEW that it felt like the absolute wrong thing to do), knowing now that those actions may potentially prevent me from ever getting a quasi-normal life back.  I’m angry with myself too, for not trusting my instincts or standing up for myself enough to go against what they were telling me to do.  I don’t blame the doctors who did their best, even the ones who didn’t listen, or take me seriously enough, or who gave me terrible advice under the circumstances, or said really offensive things, or implied this was some sort of holiday for me (well okay, maybe I blame those last ones just a bit).  I acknowledge that their training in this is pathetically limited, and that’s the reality all over the world (our country is actually a leader in handling this illness, though we’ve still got a crazy far way to go).  But the one doctor from my University days when this all started, when the symptoms were more straightforward and the clues were easy to fit together, who brushed me off over and over again and couldn’t be bothered making a diagnosis that fit.  Her I hold some animosity towards.  At least for tonight.

I’m fine overall.  But it’s always harder when I’m feeling extra sick.  It means I’m doing even less than I would otherwise be able to, and that’s demoralizing.

And as an extra kick in the teeth, a really nice, supportive, well-researched online article on my condition was sent my way.  And I accidentally glanced at the comments at the bottom of it.  And I was not prepared for the amount of ignorance and vitriol there.  I probably should have been.  But I was not.  We’re just milking the system, they said.  We’re exaggerating.  We’re just lazy.  Everybody gets tired.  If it was really so bad, more people would have heard about it.  If it was really so bad, doctors would know more.  If it was really so bad, no one would ever have mistaken it for psychological.  We’re addicted to being waited on.  We’re afraid to work.  We’re imagining symptoms that are not there.  If I was really so sick, I wouldn’t ever be writing on the internet.

Well let me tell you, ignorant commenters who will never ever read this, that I write on the internet because it is all that I have, and that there are many days that I do not have even that much.  Let me tell you that I am a motivated, responsible, successful, strong, rational woman, who has lived through “normal” levels of exhaustion and aches and pains and illness, and brushed it all off just like you do.  This is not a subtle thing.  It is not something you can brush off or push through.  This is not even in the same realm as any of that.  And the fact that many doctors aren’t up to date about this illness is not evidence for your cause; It is a travesty.

It is real.  And it is that bad.  And you have just made it worse.  Thanks for that.  Who the hell feels that strongly about an illness that they don’t have anyway?  Don’t you have better things to argue about on the internet?  It’s an election year in some countries, after all.

Because the last thing I need when I am feeling this miserable, and struggling this hard, and have lost so many of the people and things that are important to me, is to have you judge me for it, and question that I’m suffering at all.

I am suffering plenty.