Posts Tagged ‘myalgic encephalomyelitis’

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.

Catchy

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.

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.

Asshole.

Wallowing. …But just for a minute, I promise.

Thursday, August 4th, 2011

I watched a TV show today in which someone tried to live as a paraplegic would for a month, confined to a wheelchair. As they went through it, they spoke with people who had been in accidents of various sorts, and who were trying to come to terms with their new reality. So many of the sentiments of what they said felt so very familiar.

I wouldn’t have thought I could handle it. But you do somehow. Because you just don’t have a choice.

There are times that you shut the door at night and just break down for a while. But then you get back up and keep going. Because you have to.

All you can do is try to be as positive as you can. Because otherwise you’ll never make it through.

There are so many times that some part of my mind is still thinking that surely I’ll wake up any second. That surely this is all a dream.

It happens so quickly, and you realize that it really could happen to anyone. They’re just regular, able-bodied people who aren’t able-bodied anymore.

You hear a lot about people this happens to at first…and then you just stop hearing anything about them.

Don’t assume that they don’t want you to ask about it. They would rather you ask than you assume.

A lot of friends just stopped coming by. The chair is too hard for a lot of them to deal with.

I find, though, whenever I watch things like that, that I can’t help also being struck by the differences. And I’m not for a second saying that it wouldn’t be horrid to have a spinal cord injury. It would be awful. And my heart goes out completely to anyone who has to struggle through that. I wouldn’t wish it on anyone. It’s just that parts of watching their experience also drew attention to some of the really difficult pieces of my own existence right now. I try to focus on the positives, I really do. And I hope that venting this doesn’t negatively affect anybody’s perceptions of me. It’s just that some days and some moments things manage to creep through for a while. And I thought that trying to write them down might be a more productive way to handle this than marinading in them on my own. I preface this knowing that it could be much worse. I think often about how lucky I am in so many ways, and how many people with and without this disease are SO much worse off than I am. I truly do value everything I have going for me. And at least I have hope. Six percent is a heart-breakingly small statistic for recovery, but it is something. And though by most accounts more than half the others stay the same or worsen, there is another group that has at least a partial improvement. I may yet get out of this (and I had better, because I’m not sure that I can handle the alternative). But that doesn’t mean now and then it doesn’t get overwhelming, you know?

There was this whole team of rehabilitation workers filmed in the show who were helping the newly injured adjust, teaching them how to be independent, and wishing them well, and sympathizing about how hard it must be.

People finding out what had happened to them immediately had a sense that was awful, and responded largely with sympathy. Most people finding out what has happened to me have no idea what the ramifications are. Many think I’m basically fine.

They went to a support group for people going through something similar. They could go to that. There was even one for friends and family, since there is an amazing amount of strain on people close to someone disabled, who suddenly find themselves in a caregiver role.

The people with some use of their arms could work out the muscles they still had use of, to try to compensate for other limitations. I can’t work out ANY part of my body that way without making myself sicker. Maybe it’s odd, but this was one of the things that struck me most. I guess it would just be amazing to be able to work hard and have it make a difference. The only thing I can really actively do to get better is to do nothing. Which is an incredibly helpless feeling.

Some of them could drive, with the use of their arms. Some of them could push their own wheelchair, and the others could sit up in one, even if they needed to be strapped in. I couldn’t. I am completely reliant on my husband. Every part of me is defunct to one degree or another, and energy used by one body part comes out of the same communal store. And I cannot stay upright.

They could sit and drink a beer, and eat a meal at a restaurant. I can’t. My body can’t tolerate either alcohol or regular food anymore.

They still had their mind. They could think straight, and talk to people, and consider careers and other things they wanted to do with their lives. They could watch TV without feeling the strain of it. They could read as much as they wanted to. They could type up something like this without paying for it later. They could express themselves whenever they wanted to.

I think it was just extra hard because the thread running through the whole show from these people was that they can still do anything they want to do – they just have to find a way to do it. They could trade hard work for increased independence, and I don’t feel like I have that option right now ,but desperately want it. I just want to be able to DO something. I want to be able to work towards getting better in some active way. I want to figure out how to get around my limitations and LIVE. I want to be able to get out in the world again with everybody else.

Hell, I just want to sit up again for an hour without a problem.

I want to be able to talk to a friend for as long as I want to without knowing in the back of my mind that I’m going to pay for it.

I want to use the computer as much as I want, or read all day if I want to. I want to be able to write this stuff without feeling like my head is about to explode from the strain.

I want to be able to watch half an hour about paraplegics and not feel envy.

Things That Have Been Helpful

Tuesday, June 7th, 2011

There are a lot of hits here now looking for CFS stuff.  …Which is neat, but also very frustrating, since I have been slowly compiling lots of useful information, but am really not yet well enough to write it all up, or even compile a comprehensive set of links.  So… someday, when I’m better, I would dearly like to compile together a bunch of the information I’m collecting about CFS, and some of the documents I’ve made to take to doctors, reviews of books that were actually useful (and warnings about the ones that were crap), etc. and post it here so that maybe someone else won’t have to do some of the work I did. In the mean time, though, I thought I might as well throw up at least a few of the things that I have been finding most useful, despite the fact that I’m not currently able to make in as complete a resource as I’d like, or write it up all fancy-like. Call it a step in the journey of unlearned perfectionism. Or call it Bob. I don’t really care.

Some of these I may have already posted here along the way, but I figured they were worth mentioning again in one place. I will also say that I’m certain there are TONS of other things out there that are also great but I don’t know about yet or haven’t been making use of personally. My research got a little cut off by the sudden drop in functioning. If anyone stopping by can think of something they found super useful or enlightening (and credible), feel free to leave a link in the comments. I know that a lot of these are obvious to anyone who has experience in the CFS world, and I don’t expect any of it to be ground-breaking.  Can’t hurt to put it out there, though, just in case someone can use it. I’ve focused on the CFS side of things, but there is a lot of overlap in what’s relevant for CFS and for Fibro, so I’m sure these would be of use to people with Fibromyalgia too.

In addition to the Canadian Consensus Document and the Myhill book/site, which I have mentioned before (and have found very useful), I would suggest people looking for answers consider Teitelbaum’s site (and/or book) and the free program there to assess your symptoms and suggest treatments for them, and possibly this book by Alison Bested and others, which has a little about the practicalities of living with this (energy conservation, disability claims, etc.).  I would say Consensus document for the physical overview and research summary (though slightly outdated), Myhill for some hard science and testing suggestions, Teitelbaum for more treatment suggestions (his approach and Myhill’s are very similar) and supplements, and Bested for a few odds and ends not covered in the other two.  Much of the core information across different resources is the same, which says good things about it’s credibility.  It does mean there is some overlap between good resources, though.  This book by David Bell is a very good look at the likely physical process going on and causing problems, though it is very scientific (a plus for some people and I imagine a minus for others) and is not really intended to provide treatment suggestions so much as raw information.  I liked it though, and was pleased with the purchase.  Cannot say the same for many of the other things I bought.  Myhill, Teitelbaum, and Bell are all doctors whose names seem to come up a lot in CFS circles.  They’re part of the small group of people really working to make progress with this, and I would trust their judgment in most places.

For “resting” periods when I’m not supposed to be doing anything more than meditating or thinking, I invested in a few CD’s.  There is a lot of actual science to back up the Health Journeys guided imagery CD’s if they are used correctly, and I’ve found this one useful.  I am also really liking the self-hypnosis ones by Gurgevich.  Both guided imagery and self-hypnosis give me a little more to focus on than strict meditation, which makes them feel like less hard “work” when I’m mentally drained.

This page was pointed out to me by someone, and though it was written by someone with Lupus rather than CFS, has been an easy place to direct people wanting to understand the concept of energy conservation.  I was also sent a link to, of all things, a Golden Girls episode, but it actually does a really good job of bringing across what it’s often like to deal with doctors when you have CFS (the doctor in New York, in particular, seemed far too familiar to me).  Sad that not much has apparently changed since the time of that show.

And just when you thought you had this sort of figured out, here is an article that mentions one of the “outbreaks” of CFS, where something triggered the illness in multiple people at the same time.

Tips for the Newly Diagnosed:
1) Learn as much as you can on your own, because sadly in 2011 as I write this, unless you get in to see a specialist who deals almost exclusively with CFS (really – not just a regular rhumetologist or anything) you will probably end up knowing more about this than your doctor does.
2) Make sure any sources you’re consulting are credible, and double or triple check their information against other sources you also find credible. But don’t rule anything out because it focuses on a more naturopathic approach, herbal treatments, diet changes, and non-standard tests. Supplementing various pieces of the puzzle is huge in treating this stuff, and comes with very scientific backing.
3) When you get that gut feeling that you are probably doing more than you should be, STOP!!! Rest. No matter how bad you think things are already, you can still get worse. And you don’t want to.
4) Pride is for suckers. Learn to accept help when you need it, and to decline invitations that you really can’t handle the strain of accepting.  Consider the idea of adjusting your activities to conserve energy (sitting down when you need to, or even having someone push you in a wheelchair if needed), even when it draws a little extra attention to you or makes you feel silly/embarrassed (this is hard. I know).
5) Your energy is now precious, and limited. Practice spending it only on the things that really matter to you. Cut down expectations on yourself to do everything as fully as you might otherwise be inclined to.
6) I would also add in that anyone bedbound for more of the day than usual should spend some of what energy they have doing range of motion exercises, particularly for the knees and shoulders.  I thought that I was okay since I hadn’t been out of commission for that long, and because I was still moving around some.  Not so much.  So I would advise anyone in the situation I was in to start early with those things to prevent problems rather than waiting until the joints start cracking, grinding, and doing things they shouldn’t. Just don’t push it so far that you’re wiped out the next day. You may need to cut out other activities to make these possible, but they’re important.
7) I would also suggest asking a doctor about any organizations in the area that might be able to help provide services (in home physiotherapy, meal delivery, housekeeping services, assistance with wheelchair costs, etc.).  It seems like there is a lot out there in many areas that people just don’t always think to connect you with.
8 ) If your brain is shutting down sometimes, try lying down more. It tends to help (which makes sense, as often this seems to be a blood flow to the brain issue).
9) If your short term memory and concentration are shot, try a soft-shell binder (lighter than the hard kind) with dividers in it so that you can jot down notes for yourself in whatever sections are relevant for you. Mine has to-do lists, shopping lists, phone numbers, things to mention to doctors, etc. I keep it beside me with a pen clipped on, and it has done a lot to prevent me from writing the same note to myself fifty times over and then never consulting it because I’ve forgotten it was there.
10) Trust your gut. You are not crazy. You really are ill. And you’re not alone in this.

Edit:  Updated with a comment below with a few additional resources I’ve found useful.

Pop, grind, separate, crack, crack, crack.

Thursday, June 2nd, 2011

So apparently the cracking, grinding, popping, separation, pain, etc. in my shoulders and knees isn’t actually a CFS thing. It’s because haven’t been able to use my muscles enough for them to keep the strength to keep my joints in place as they should be, and those two joints are the two in the body that are loose enough to come apart some without that muscle action. Ack.

Who knew that degradation could happen so fast… I’ve only been on the couch for, what, a month? There’s a risk of osteoporosis too in the long term. …I knew this some from one of the books I read, but it didn’t seem like something so immediate. It seemed like I would be well again long before any of that applied to me, or that because I was still moving around and walking a little bit that I wouldn’t have to worry so much. Apparently not.

So now doing anything is dangerous. And not doing enough is also dangerous.

And I am realizing first hand how much trouble I am going to be in if anything else goes wrong while I’m dealing with this illness. I am so totally used to bizarre and random body discomforts and oddities that I really didn’t blink an eye when my knee detached itself temporarily the other day. Just swore a little. The fact that it continued to do so in the following days didn’t even make the list of things to mention in passing to my doctor when I saw her yesterday. It was my massage therapist today who noticed something was WAY wrong. This is a whole other side of badness that wasn’t even on my radar. I really thought that I was starting to get the hang of how much to do every day, because I was now able to avoid most of the pain, and was very slightly better most days than the day before. Now I’m finding out that “successful” rest level is just destroying my body in other ways.

I don’t want to have my joints seize or freeze or detach, or my muscles wither, or my bones get brittle. But I’m also suffering really badly right now from trying to move my limbs around slightly more today because I was scared by the realization that this could happen. I can’t do that much.

This whole thing is really freaking scary.

Edit and Update – March 2013: This post gets frequent traffic, so I thought I would give it a quick update. Cracking joints is apparently a symptom of Lyme Disease, so it’s worth checking that out thoroughly if you’re searching here for this. That said, I do think that cracking, grinding joints seem to be more common and easily triggered in people with severe ME/CFS. I could be wrong, though, since it was really hard to find any mention of it when I was looking. My guess is that it has something to do with the muscles just not having the energy to hold them together right, or possibly there’s some relation to other underlying bacterial infections (since in the end it turned out I likely had bartonella at this time). I don’t know. I do know that the joints all over my body went MEGA cracky before I had fully crashed (literally every movement set off at least one or two cracking sounds, from all over my body), and before there was any pain/discomfort/difficulties in my joints. Also before it could have been related to deconditioning. There’s got to be something more to it.

But in terms of resolving the problem, more movement did help, and continues to. Punching across the chest in front; arms arcing from down at sides, up overhead and ending flat against the bed with elbows on either side of the head; out to the sides like a snow angel; and extending legs from bent knee to straight knee – these were the most critical motions for me, because they prevented the most aggressive joint issues I encountered. I’ve been able to add a little more as I’ve gotten better. Look into Range of Motion exercises. They do help.

BUT…I would never, ever suggest doing an exercise that would cause an overall worsening. I had uninformed physiotherapists and doctors give me some truly terrible advice along the way. Now that I’m seeing an expert exercise physiologist, I have been advised to do only a few reps of a single exercise at a time, then rest in between for 4-6 times as long. I’ve been told to spread out the exercises so that I’m never doing too much in one sitting, and never more than about 30 seconds of activity before a rest. I’ve been cautioned to never do anything “somewhat difficult” (though that would have been anything at all at my worst). If I had known what I know now when writing this post, I would have done maybe one single arm lift at a time, then rested completely for half an hour or an hour if I had to before attempting the next one.

But in the end, it worked out okay. I can move them smoothly now. I still start to get cracking and pain if I skip a day or two of the motions. But in the bad weeks, even just 5 reps of the cross chest ones in the morning and 5 at night, along with one or two up overhead to stretch my shoulders that direction is sufficient. That little bit is enough to keep the problem at bay.