August 29th, 2015

I’m going to be officially stepping away from the blog for a while, so I wanted to post something here to let you all know where I went before it shuts down.

I’m still very grateful for a slow upward climb in my health situation, but for some reason writing is one of the harder things for me to do, so I’ve been taking a break from it (among other activities that I’ve had to admit to myself are draining).  It’s been helping, though, so at this point I can’t predict how long it might be before I’m able to get back into it without strain…and paying monthly upkeep for the blog wasn’t something I felt was reasonable anymore (to be honest, it probably hasn’t been reasonable for a really long time, but I couldn’t bring myself not to hang on to it).


I’m super grateful to all of you who’ve been with me at various points in this journey.  It’s been great getting to know some of you, and knowing others of you were silently lurking.  :)   I ‘d love to put the blog back up someday in the future, so who knows.  Keep hold of the link and you can read it when you’re old and grey.  Or have it wired into your brain.  Whatever it is the cool kids do in the future.

Wishing you all the best.  Keep in touch if you’re able.


In Its Pocketses

March 21st, 2014

I read something today asking what the strangest thing in your purse is right now. I realized it’s been literally three years or so since I touched my purse, so I decided to go through it and explore what’s in there. In the interest of science. Or something. Anyway, here is the report.

As a side note, apparently my purse is currently living underneath the little table in our guest room. I don’t know why it’s under the little table in the guest room, but in the interest of logical organization, it is accompanied by some important documents, several empty cardboard boxes, and a carton of electrolyte drink mix. I assume the purse was sitting somewhere inconvenient three years ago and got shoved in there “temporarily,” since the guest room tends to be a convenient place for shoving things. Except guests.

Contents of Curiosity’s Purse:

1) Lip balm (which has similar cousins in pretty much all of my belongings that could hold one), and also a tinted lip gloss, for if I was feeling fancy.

2) Hair clip I’ve been looking for for over three years now and was starting to believe had been either a figment of my imagination or involved in some unexpectedly traumatic hair-clip-violence that I’ve since blocked out.

3) A scrunchie that I’m reasonably sure I’ve never actually worn in public. And yes, the 1980′s called me, and they’d like their hair products back. They used a land line. …Except they just called it a “phone.”

4) Go Train schedule printed out in font so small as to be almost unreadable, in case I wanted to know what the Go Train schedule would look like if read from a very great distance.

5) Small package of Kleenex that I’m reasonably certain I can’t make interesting.

6) Hand sanitizer, from the period of time that I was getting sick every time somebody so much as made eye contact with me. …Also, that sentence makes “eye contact” sound WAY more disgustingly tactile than I intended it. Seriously, though, letting people rub their eyes on you probably is a good way to get sick.

7) Brand of feminine products I switched from years ago.

8 ) Not one, but two photos of my own face. I’m pretty certain these were for my hairdresser to show her a cut I was really happy with. Let’s assume. Alternately, I can hold them up all official like and say “HAVE YOU SEEN THIS WOMAN?” and confuse the hell out of people.

9) One small Ziploc bag of very desiccated almonds, not all of which remained in their confines. I put them back in the purse after investigating. Live on, almonds.

10) One large dried fruit snack bar.

11) Several small dried fruit snack bars.

12) Additional small dried fruit snack bars.

13) Who needs this many dried fruit snack bars??? Was I portaging??

14) Crumpled grocery list that included items like “millet” and “amaranth,” neither of which I would purchase now. This was from the “tackle my poor digestion” era where I was trying to identify food allergies/sensitivities, and I don’t need them now since I’ve got a pretty good handle of what works and doesn’t work for me, and the factors that aren’t actually related to food. Also, amaranth tastes like dirt. So there’s that.

15) One 8.5 x 11 inch piece of white paper in my husband’s handwriting with the words “To Whom It May Concern” scrawled in large letters across one side, and “I love you” on the other. I’m positive there was a story to this, and cannot for the life of me remember what it was.

16) The receipt for my beloved cat Morning’s emergency vet visit and euthanasia Ouch.  That was…an unexpected find. Dear, sweet boy. I still think of you all the time.

17) One bottle of Gravol, and a small plastic case with brand new ear plugs in it. I really don’t know what that was about. Sounds fun.

18) One small container of my favourite grapefruit lotion that I can’t use anymore without my nose stuffing up like crazy. There should be laws against new allergies developing later in life. It’s like they hold off just long enough to confirm what your favourites are.

19) I’m pretty sure I just used “later in life” in reference to myself, like a mature person. HA ha ha ha ha ha ha HA ha ha. …Although to be fair, those two pictures of my face mentioned above were not taken with a cell phone. Touche, self. Touche.

20) Coupon for $10 off shoes that really I knew I was never going to use when I put it in there in the first place, but stuck in anyway (in case of shoe emergency, I guess. Shoe emergency and limited funds). It expired in 2010.

21) Various receipts and scraps of paper, including one enigmatic Chapters receipt with “3pm Cost of borrowing $2000″ written on it. This was in my writing and seems oddly suggestive of loan sharking activity that I’m reasonably sure I’ve never been involved in. I have no idea what this was (and also plausible deniability about any broken kneecaps involved).

22) Assorted lint.

23) Contact and hotel information from that weekend in Montreal that I took when I was free of the antidepressants but didn’t know what M.E. was yet, and was just confused about why I was so crushingly exhausted and unwell and incapable of getting anything done in the days following. And also why I had so much fun if my problem was supposed to be depression.  This was also a time when I thought I would continue to just get better, which is bittersweet.

So there you go. The contents of my life several years ago. There was also a pencil and notepaper involved, but I think I scavenged that pretty early on. It’s always the most valuable things that get pinched first.

It was kind of weird going through it all. I forget sometimes that people use purses. I’m determined to get well enough that someday it becomes practical for me to need to carry one around again, but it’s so foreign now that I think I’m going to feel like I’m playing dress-up.

It’s okay, though. …I’ve got a scrunchie.

She is kind of functional. Nice and warm.

February 27th, 2014

My cat has recently taken to trying to sleep around my neck like a scarf. This wouldn’t be so much of a problem, except that she also has a tendency to forget that she possesses legs when she tries to get up. She just thrashes herself around like a salmon until she ends up upright.

In related news, if ever you’re planning to curl up with a salmon, you might want to protect your larynx.

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

November 15th, 2013

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

Jennifer Brea on TED

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

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

Moving my shoulders, ever so slightly

November 6th, 2013

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

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

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

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

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

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

September 23rd, 2013

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

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

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

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

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

I don’t even know what time it is.

Requisite Cliff-Hanger Update

June 6th, 2013

Turned out husband had appendicitis.

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

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

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

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

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

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

I have to bounce back.

Please, please let me bounce back.

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

Painful Truths

May 29th, 2013

So my husband was awake all night from severe abdominal pain.

This morning he called the health line we have here, and they advised him to go to the E.R.

I feel awful for him and the rough night he’s had.  I’m concerned for him, of course, but I’m not overly worried at this point. Hopefully it’s nothing serious, and hopefully he’s in good hands regardless.

But it’s been a painful reminder of the impact my own illness can have. My husband is in severe pain, in the ER right now, and I couldn’t drive him there. I am not with him. I am not holding his hand. I am not talking him through it or being his rock. I can’t fulfill my role as the calm-in-a-crisis one. If something serious happened, I wouldn’t even know until somebody got around to calling me, and if they did, I don’t know how I would come see him anyway (though, somehow, I would FIND A WAY). I can’t push my own wheelchair around. I can’t even really sit up for long enough in a regular wheelchair for somebody else to push it around for me. I would need a caregiver.  And my caregiver is my husband.  And wanting desperately to help him isn’t enough to make me able to.

I can’t even entirely help myself.  I don’t even know what I’m going to eat today. Thank goodness there are leftovers in the fridge, and new groceries so there should be things I can grab haphazardly to gnaw on. I’m not well enough to fix myself even a simple meal without payback. I’m getting closer, but I’m not there yet. And if I was ever on my own long enough that the groceries ran out, I would be completely reliant on finding someone else to get some for me. It’s literally not possible for me to get them myself anymore.

I will be fine today, but they’re difficult realizations to have pushed to the forefront.  Wanting something really badly isn’t enough to make my body capable of it.

I cannot care for myself independently. And that’s a damned scary thought.

I cannot care for him either. And that’s so very much worse.

Are you my mom or step-father? You should probably close your eyes, then. This post is broken. It causes blindness. And hives. And it’s full of pictures of regurgitated food. On spiders. Singing Ke$ha songs.

May 22nd, 2013

…Though I suppose that defense only works if they know who Ke$ha is.

Confession:  I don’t even really know who Ke$ha is.  I am seriously out of date on overplayed pop stars.   Defenses failed.

This is going to be a shorter update than I’d like to give, but it’s the best I can do at the moment.  Physically, am hanging in there.  Have been a bit extra burnt lately.  Of course, there are all kinds of things I’d like to say about this, but the fact that I’m burnt already means I probably shouldn’t.  ;) The overall trend is still going in the right direction, though, and I seem to have a more solid grasp every day of how to keep it that way.

Have been under huge strain for the past few weeks, though.  My husband and I are trying to get my mother and her husband out of their current (very poor) situation, and into somewhere safe and secure and where they’ll be okay from here forward.  And that involves moving them.  And we need to do the house purchasing, because they’re not yet in the country.  And we need to find a way to reliably get one of them into the country, which might be difficult (but immigration will not give a straight answer about it or tell us anything about their chances, only “fill out the forms and we’ll let you know in 6 months”).   And we didn’t know that person didn’t already have citizenship until this morning.  And all of the researching and organizing and phonecalls and planning falls on us.  And the whole thing is dependent on a third party, who is impatient, and self-interested, and sometimes volatile.  And we can’t talk to that third party directly.  And the person who can is also sometimes volatile, and prone to despondency and occasional rash ideas.  It’s been a lot of work, and a lot of stress, and sometimes it feels like herding cats, except instead of herding I have to give the cats thousands of dollars and get them to fill out paperwork.

I am leery of saying any more than that here, because I don’t want what I say to be misconstrued.  And I dearly love my mother (she is not at all volatile.  She is made of innocence and rainbows).

Plus, there’s a slim chance that someday they might accidentally find out this blog exists.  And no good can come of cats reading my venting here.

At any rate, I’m just trying to cope at this point.  And hoping very much that this will all be resolved somehow soon.  The rest of my life has sort of been on pause until then.

Maybe you don’t understand as much as you think you do.

May 9th, 2013

Starving, cancer, heart failure, depression.   And people thinking they understand when they have no idea and coming off like douchebags.

Happy Mental Health Awareness Week, everybody.