Well that didn’t work out so well

We tried the SSRI.  Zoloft to be precise.  I had been retching when I got upset, or moved sometimes, despite not having much by way of nausea…this was prior to starting the Zoloft.

After starting the Zoloft?  Retching and nausea and vomiting.  After increasing to 25 mg of the zoloft?  Crushing nausea that makes you want to die, vomiting, can’t eat, awful, can’t keep down what you do eat.

So I saw the shrink on day two of that awful 25 mg of Zoloft and he said that we can cut it back to 12.5.  I’m wondering now why not just cut it back entirely.  I was hoping it would help, I’m not sure it will.  And given what I’ve been reading on Reglan and it’s side effects (tardive and otherwise), I’m wondering if the Zoloft might do more harm than good.

Harm:  It’s making me nauseous even at 12.5 mg.

Potential Harm:  In the case studies I read, it is associated with return/increase in some of the neuropsych Reglan effects, specifically an interesting one called “akathisia”.  Never heard of it?  Neither had I.  I think I read it in the list of “movement disorders” that Reglan can cause.  Here’s an article with a set of case reports on akathisia, Akathisia: overlooked at a cost.  In the discussion, you’ll note that both dopaminergic drugs and SSRIs can cause it.  So if this is what’s going on with me (and oh it really does sound like it fits the bill), taking an SSRI to treat it is perhaps not the best idea.

So after researching this akathisia thing, I called my GI doctor and my neurologist.  I’m nervous about both calls.  GI because I just always am, talking to her is a chore.  She’s going to hear about the nausea and suggest putting me back on Reglan, then ask if the psychiatrist said that the reglan can cause this.  She’ll discuss “neuromodulation” again, which means (surprise!) more drugs.  And then finally we’ll discuss a feeding tube.  Here are my answers to these presumed queries:

No, I’m not going back on the Reglan.  I really feel that it played a significant factor in what is going on right now with my neuropsych symptoms, and they are scary and dangerous and completely debilitating.  So no to Reglan.

Yes, he said he’s had patients who have taken it and have not had this but he said Reglan can do this.

I am reluctant right now to add another medication into the mix.  Tell me what this med is meant to do, what the side effects are, is it likely to make anything I currently have worse?  Add something new?

I am eating about 600 calories a day if I am lucky.  Now that I’ve reduced my dose of the Zoloft to 12.5, while I am still very nauseous and it is not helping my appetite, I am not actively throwing up as much…just dry heaving mostly.  But even with this “progress”, I am not getting more than 600 calories due to ridiculously low appetite (which I think is an enduring side effect of the Reglan, it started when I was still on it).  I have lost a lot of weight since this started, I am now down to 120 lbs.  You mentioned a feeding tube last time we talked.  I’d like to set criteria for that.

I’m nervous about talking to the neurologist because I don’t know her that well.  And she seems kind of, glib.  What if she’s like “what the fuck are you asking me for?”  She didn’t prescribe the med.  But I guess the answer is I’m asking her because she’s my neurologist, and because I’d like her opinion on whether this is some effect (tardive or acute) of taking a D2 antagonist for way too fucking long.  She’s not only MY neurologist, but she happens to be a specialist in parkinsons and parkinsonian diseases, as well as run the movement disorders clinic at the particular BATH where she’s on staff.  So I figure if you’re gonna ask a neurologist about neuropsych consequences of a D2 antagonist, why not go to one who kind of specializes in dopamine?  Why not.

But how to say all that.  Erg.

Because it’s like “hi, can you tell me if it’s this drug or if I’m just completely and suddenly insane?  Thanks!”  Doctors must love being in that position.  So I wait here today with some trepidation for my return calls.  The GI doctor MAY call back tonight, she has a piss poor track record.  The neurologist, I don’t know, this is the first time I’ve called with a question.  I was told it would be given to Keith, her nurse.  So we’ll wait and we’ll see and in the meantime we’ll take our Ativan because my god it is the only thing that helps.

Woke up down

so down.  The erythromycin my GI doctor ordered as a medication to increase gastric motility has given me thrush. So now I’m fixating on the thrush, on the fact that even the crappy, not very effective erythromycin is not an option, and on the idea that I will end up with a feeding tube…and then I start thinking of all the things that could go wrong with a feeding tube, not the least of which is the chronic thrush.  Well, you get the idea.  This is how I woke up this AM.

I feel like I should be able to do more here, to do more to pull myself out of these moods, to better self-regulate.  I feel like it’s a personal failing that I ended up like this.  I know I had to take care of my physical health, and that meant gobbling reglan, and it also meant often not being able to uphold commitments, covered that in past posts.  I get it, but at the same time, I still feel like I somehow let myself down.  That I should have tried harder or something, which is absurd because I still recall how it felt earlier this year, or even last year, when I was trying as hard as I could and it wasn’t working.  I remember it.

I wish there was room for something in between.  I wish I had been able to make a go of working at home, but it’s impossible to find clients who are ok with someone who can only work sometimes, possibly outside the client’s convenience.  It’s impossible for me at least.  What I see for client wants boils down to “low pay, on MY schedule”.  I’d be willing to do the former even, but I cannot do the latter.  Take this one project I have been working on. It is time locked, i.e. I can only work up to the current day since it’s compiling daily material from an online class.  I did up to the current date in April, then again in May, and I recall thinking “Jeez, it’s going to be tight at the end, I mean, I’d better be on top of it.  I hope that’s not a period of poor health for me because that’s going to be hard, how much would it suck to have been on top of to ahead throughout this project and end up missing the final deadline and missing the chance to even obtain the material because I ended up too sick to work…”  And here we are, in that last week of that class and I am fighting to stay out of the hospital.  I went in and pulled down as much of the material as I could over the last few days, got all caught up again, but still, I have to wait the days out to get the rest of the material…and what if I end up inpatient?  It’s a definite possibility, the way things are going, either for physical or mental reasons.

This is a lot of ramble, I know.  It’s early.  I’ve been awake for a while, laying in bed with my body still feeling tired (exhausted even) but my head increasingly full of dread and doom.  Not a good way to start the day.

I’m trying to put off taking an ativan.  So far, I am very uncomfortable feeling (and of course there is the nausea, and the mouth and throat pain from the thrush) and I’m only just starting to get the aching heat in my limbs that tells me that little tiny muscles I didn’t even know I had have been tensed up like rocks.

day two of zoloft, still having the fear and loathing

Well “loathing” isn’t quite right.  Fear is.  Fear, panic, compulsive overwhelming consuming concern for anything and everything.  I mean every little thing, immediate and far, that might affect me, my loved ones, now or in the future.

I woke up ok.  A little apprehensive about the day, the last two days were so bad physically.  Woke up better today than I did yesterday, honestly yesterday I was crying before I even got out of bed.  Today, I was ok but apprehensive.  Got up, had some ideas about what I would do today.  I even had the clarity and lack of fear to look at some online jobs, which is something I’ve had to avoid doing because even thinking about it, even seeing the thumbnail for the job site in my google dashboard has given me a shuddering feeling in my stomach, a spinning in my head, a gripping in my shoulders, a weakening in my limbs…basically the start of a panic.

But today, it felt ok to look.  Not much I can do, even under better circumstances.  One was great, except they needed you to work at 1:00 PM Perth time.  That’s 1:00 AM here.  That’s not possible.

But then the fear started.  Creeping in.  I don’t know what triggered it.  Cat guilt?  I felt bad that the cat had gone upstairs and gotten in bed while I was looking at jobs, and that wave of cat guilt was hard – made me start to feel shaky.

Then there were no jobs.  And I think that also did something.  It was like “great, now what am I going to focus on today while I try to ride this thing out?”  It’s a fine line, there is a lot I cannot do right now, and so much of it that I can do, I can only do slowly and on my own intermittent (and totally unpredictable) schedule.  But yesterday afternoon, I did a little work on the slow project I’ve been working for that client from March and while I did make some class A screw ups and have to redo a bunch of work, I did find the work to be therapeutic.  It’s unfortunate that most jobs would not allow me the kinds of flexbility I would need to do the work when I can do my best (and keeping in mind that my very best right now is still highly error prone, as yesterday demonstrated, so it may not be good enough for someone working on a timeline, as most employers are).

I do think today I want some structure if I’m not feeling too sick.  I am recovering from this AM’s panic.  I took an ativan, rested (crying), then Husband helped me get a smoothie together, then I drank that and had my half a zoloft (one day left at this half dose, then up to 25 mg on Saturday, god almighty I hope it helps).  Watched some old Parks and Recreation, now I’m writing, then I’m going to talk to my friend B for a short time.  Then I may rest and try to eat some more, it depends on how long we talk.  I should shower, but I also want to do some work with the PDFs for that slow mo project.  So I’m not sure shower will happen until later, which is probably not the worst thing since I am super dizzy with the ativan and I think with the zoloft too.  My BPs low, well the usual low (unless I’m panicking) and I’m feeling very unsteady in the shower.  So maybe I’ll computer after I talk to B.

And this all assumes I feel ok, as in not retching or vomitting or feeling that crushing nausea.  Gotta stay hopeful.

Tuesday, Wednesday stay in bed

Or Thursday, watch the walls instead.

You got that right Mr. Smith.

Tuesday wasn’t too bad, it was awful in the AM but then the clouds lifted and aside from feeling a little physically bad (mild nausea, headache), I was feeling good.  Actually good, energetic but not crazy energy.  Like me.

Wednesday was not ok.  Today was right up there too.  Both days have had much more nausea, vomiting, and retching.  Sometimes I know it’s coming, sometimes it just comes up out of the blue.

Wednesday was so bad that I woke up this AM feeling the dread again.  I had been doing pretty well on dread, it seemed to be retreating a little bit.  But I woke up this morning at 4:30 (as usual) but instead of staying sleepy-dozy and managing at least to go back to a light nap, I was wide awake riding the anxiety train.  Racing thoughts, worry about how long this will go on, what I will do to eat, I barely ate yesterday (and today turned out to be even worse).   Worry about what I will do in July when husband goes out of town.  This is where a paucity of family relations really shows up in spades.  No mother or aunt to call to come help me out while I’m alone.

Today I started the Zoloft, half a 25 mg pill.  On top of Zofran (for the nausea, for what it’s worth).  My appetite, which started waning even before I stopped the Reglan (I think on account of the Reglan induced depression) is just flat out gone now, so each bite is a chore of unpleasant sensations, from sight to smell to taste to feel.  Feel and smell are the hardest.

I called my GI doctor today to tell her what’s going on.  She will recommend going back on the Reglan, and I know this because she already did recommend it.  I will not go on that again, I’ve seen down that dark hole, what I saw was bad enough and I’m convinced there’s worse lurking.  Dangerous psychosis, suicidal depressions, the like.  Maybe for someone who was all sunshine and puppydogs in their head to start with, it wouldn’t be so dangerous, but my head is not full of sunshine and puppydogs, at least not exclusively.  There are some mighty dark corners in there already. They don’t need a big chemical boost.

So after retching for 20 minutes a short time ago, so hard that I feel like things in my chest are giving away, I took another ativan.  I was trying not to take too many of them, but I’ve been getting keyed up, agitated, my legs won’t stop shaking, and so I figured I would take one and maybe it would help with some of the nausea and retching.

Jeez, I hope so.

And the last thing I did today, before calling it “a day” and coming over here to blog, was call my local “pot doc shop”.  See, medical marijuana is legal, in theory, in my state.  It’s just finally getting to the point where certified patients can buy it.  Not quite, but we’re assured that any old day now….

So, now would probably be a good time to at least start the process of getting certified.  My god, it’s like I have so many things to choice from, which symptom/syndrome would I want to base it on anyhow?  The gastroparesis with it’s prescription drug failure, appetite killing, nausea inducing, vomiting set of upper GI symptoms?  The chronic pain from my connective tissue disease?  The migraines?  The insomnia?  And now, the anxiety?  We have a lot to choose from.  If it helped even a little with the eating and sleeping, it’d be worth it.  And it’s pricey.  You have to see the special pot doc, and you have to establish that there is a genuine patient/doctor relationship there, which means getting your old doc to copy and send records ($), then having your record review at the pot doc ($), and your initial consult ($$$).  There may be a second consult too, I’m not sure.  Then if you want the pot doc to help you navigate the process of transferring their say so that you’re certified into a state card saying you’re certified, that’s more ($).

But so are these shakes that I buy in bulk from Amazon and throw up every morning, and so was the medicine i bought from canana last fall in the hopes that it would work as well as the REglan without all the side effects.  So are the doctor’s appointments where they do everything short of saying “we can’t help you, you’re just fucked”.  So is watching my life slip away even more. My god, it was small enough, then smaller, then unbelievably smaller still.  Now?  I find my life is barely larger than the skin stretched over my bones.

A little worse, a little better

Yesterday was tough.  Possibly due to needing to get out early, go somewhere brand new, see a psychiatrist (another new experience for me).  I think I’ve demonstrated that my cycling effect is not dependent on the presence of my husband.  I.e. he was home Saturday through Monday, and I was just as much of a wreck Saturday, Sunday, and Monday as I was Thursday and Friday.  And I’m still better at night.  It starts clearing up in the evening, by 8 I usually have a moment where I realize my arms no longer hurt, the pain in my neck and head has lifted (at least some, the headache does linger), I feel clearer, I am less consumed with dread and grief.  It’s delightful.  It’s not delightful to know that this pattern means tomorrow AM I will start all over, but I am trying to focus on the positive.  I.e. I get a break.  I will take it.  Oh god I will take it.

Today, this AM, was bad.  I vomited up the breakfast shake I had eaten, and the Ativan I had taken before things got too out of hand.  I had it in for about an hour, so I guess I got some Ativan, just not all 1 mg dose of the Ativan.  I decided I’d take another if I had the horrors coming on.  Ironically, I vomitted shortly after taking the Zofran that my GI doctor told me to take so I wouldn’t vomit.

She wants me to go back on the Reglan.  I said nope.  No ma’am.  Give me medical marijuana before you give me that poison again.  She says that she knows of patients who have had psych symptoms (she’s saying “depression”, this feels like depression plus) while on Reglan but that now that I’ve discontinued it, “it’s out of your system now, it’s a very short acting drug”.  I ask her but can’t it have long lasting or permanent effects on dopamine receptors, like what happens with tardive dyskinesia.  She says yes, but only with Tardive dyskinesia.  I tell her I have read several peer reviewed papers, case studies, with reports of enduring, long lasting psych effects from Reglan, even after it is withdrawn.  She makes a non-comittal response and says she wants to talk to my psychiatrist.  Oh that’ll go well.

It’s not like there’s a drug out there for this.  It’s not like there’s research on it, so who would know what to give anyhow.  I.e. these case studies could only offer speculation of what might have been going on with their patients, one theorizing that there were phases of too little and too much dopamine being taken up by DA2 receptors.  Without any research, and without clinical guidelines, and with a doctor (my GI) who is going to be disinclined to agree that the medication she increased indefinitely without telling me to be extra vigilant for those nasty side effects can cause enduring side effects even when it’s discontinued.

Yeah, I get that.  I’m not happy about it because it strikes me as obstructionist in terms of figuring out the best way to treat this.  Her refusal to consider any role played by the nearly two years of this med followed by 2.5 months at a high dose….on top of my existing moderate to episodically severe psych issues means that she’s just sitting on key pieces of the puzzle and that strikes me as irresponsible.  Perhaps out of protection for herself, or just out of stupidity.  I can’t ever tell with her how much of her screwing up over these 29 months she’s been my GI doctor is due to forgetfulness from overcommittedness, how much is legal ass-covering and general doctor posturing, and how much might be due to her just not being that bright.

My therapist called today, she spoke to the shrink.  This is good. I had seen my therapist not long after seeing the shrink yesterday, yesterday the very bad day, recall.  She (therapist) had asked about him (shrink).  My impression was that he was distrustful of the medical stuff I was telling him, and that perhaps he thought I was playing games with him.  He asked me straight out at one point “do YOU think you’re bipolar?”  Me?  No.  Never have.  Why do you ask?  Because I mentioned that my brother was….or was diagnosed as such, and takes a mood stabilizer along with an antidepressant (zoloft?  maybe)  It came up in the history.  But you know, why ask me that?  I notice he didn’t ask “Do YOU think you have PTSD?”  He did ask some questions about it that pissed me off though, but then being asked questions about it by a man, especially one who is doing such a fine job of maintaining a professional Distance (with a capital D) is going to piss me off.  Make me feel a little like “it’s none of your fucking business so shove off perv”.  But you keep a lid on that, that’s the appropriate thing to do.  I was able to be appropriate, at least appropriately not angry.

After the appointment was the same as after pretty much any new intake appointment where we talk about my psych as well as health history, in the context of a man who is Distant and Professional and who seems a little bit hassled by how Complicated I am.  That is to say, I am always in a bad mood after one of those appointments.  Yesterday, my baseline was shit anyhow, so the bad mood on top of that I think is why yesterday was so particularly, spectacularly bad.  Spectacularly bad means lots of crying and retching and throwing up and chewing myself up inside.  It means even looking at my pets, my husband, pictures that make me happy, things that give me comfort, make me feel deep, aching sorrow because I feel like I am looking at them from far away and they are gone, like I’m remembering a happier time during this deeply sorrowful one, like I’m remembering someone who died.  Yesterday was full of that.  That and then the concrete “articulated” fear that this feeling is not going away and will not, that this is permanent like so many new “tricks” my body learns, and that I have no energy and little composure that is needed to navigate the doctors I’d need to navigate to get help, that I have no faith in their help anyhow.  Then I start thinking about how sad it is for Aaron to have to do all this, to watch this, and that seems so unfair to him because I love him so much and I want to be happy and loving with him, not sobbing and wretching.

But today I’m doing better.  Now at least. This AM was tough.  I talked to my sister, to my friend on the phone. It was effortful.  Some of the things they said made me upset (my friend talking about a cat who is sleeping on her porch, a cat she can’t take in because she just took one in and now feels extra bad because maybe they were cat friends but this second cat is feral and won’t let my friend touch it…)  That made me cry.

What’s changed?

This is a question I am answering a lot right now, from my therapist, from my primary care, from myself.  What’s going on that triggered all this acute anxiety and apparent depression?  I’d say it’s “mild” depression, although it’s resulted in my losing 10 pounds now so I’m not sure how “mild” that is.  And which came first, that’s the question I’m asking myself too, although so far I’m the only one asking that.

I discussed some of the very good possible reasons for why this could be happening right now, some of the factors leading up to it.  Focusing in on one or two of those right now, because it’s been on my mind this morning.

I don’t like feeling helpless, I don’t like being or feeling disabled.  It’s been a source of frustration for me since the health problems started.  I have managed those feelings largely through avoidance, avoiding situations where I will have to confront my inability to do something or to do it successfully using the tools I have available.  At work, that could mean something like avoiding meetings in a hot room, trying to reschedule elsewhere, because I will get sick and not be able to actually work…I may even pass out or come close enough to it that I will need to be “rescued” by someone and taken home.  I hate being rescued, in no small part because people do it badly…I don’t just mean they make you feel bad about it (they do, more often than not) but that they do the actual practical stuff badly.  E.g., I got a ride home from work from my brother once.  He showed up drunk, drove like a maniac, swearing like a sailor, agitated, slurring his speech (only a little, “just a little buzzed!”).  It was terrifying.

But it’s not just the rescuing.  It’s the confrontation of my inabilities.  My disabilities.  My “special needs”, which in the context of others’ apparent inability to actually account for and respect those needs, leave me damndably frustrated and often lacking having achieved my goal anyhow.  Sometimes expending more energy and time and health on trying to do it that way, so how much of an accommodation is that?

It’s not good for me, for who I am, to have to think of myself as incapable.  So much of my ego and personality and the glue that holds me together is a sense of my own competence.  That has been very shaken, a series of shakings that started that first time a friend and my boyfriend had to carpool up from the Great New England Wilderness to Northeastern Historic City to rescue my ass because I had driven up alone and then become too ill to drive myself home.  Big trans-state things like that, little tiny things daily.  Less now that I’m not working, and that’s actually been great for my mental health.  But then came the disability application process, and in it you have to really sit down and analyze and catalog all the ways, big and small, that you are incapable.  What you can’t do, why you can’t do it, when you can’t do it, if you can do it at all, how?  what your “special needs” are and whether they work to make you actually be able to do it or just do some semblance of it.  Like laundry.  I “help” with the laundry by moving the clothing from the washer to the dryer, in stages if it’s not a small load.  My husband does the laundry though, he’s the one hauling baskets up and down stairs, so he’s the one starting the wash and since he’s down there usually the one moving the clothes (all in one quick go) from the washer to the dryer.  I “help” with groceries, I help make the list, I put things away when my husband gets home.  I can’t write it like that for the disability form though, it’s all about what you CAN’T do and why, or the limits of what you can do.  I’d have to explain why I can’t go grocery shopping myself, that the standing and navigating a heavy cart around (fucking morons) people in the store is too physically demanding for me, that I get hurt, that I get dizzy, I start having cognitive problems (memory, concentration, mood) because I’m now orthostatic from being up walking around so long, and I forget items, have to decide if I have the energy to go back and get them or just skip them and maybe postpone some meal I was going to make….you have to give these details of WHY you can’t do what you can’t do.

I think that process broke me.  I have not been the same since.  Admittedly, that process was during the cycling nausea hell months and was also when my GI doc upped the crazy-making Reglan.  Talk about your confounds.  But focusing just on the question of “what changed”, i.e. assuming it wasn’t the Reglan, or wasn’t only the Reglan, what changed now that has made me feel so full of worry and sometimes dread, so detached and disengaged even from the things I used to take pride in doing (taking care of myself, my home).  What changed was that I got broken in March, and now it’s the anniversary of when things all went to shit at work, a reminder that although I tried as hard as I could manage, I could not keep my job, keep my boss happy/satisfied enough that she wasn’t making my life hell, keep my commitments to work even with two work at home days and still manage to take care of myself.  Happy anniversary.

I’d have needed my usual if not regular resources – not the least of which is that crucial belief in self competence – to get through this time period well.  Is it any surprise that now that I’m here after March having broken me, having shaken deep cracks in my sense of self competence, what was going to be a hard time turned into a nightmare?  In all of my list of intrusive concerns, the focal points (when they are discernable, they were initially, the metamorphosis they’ve taken into a general dread is only recent) have to do with competence and capability.  Even the ones about people dying, the start out with the thought of “where would I be without this person?  how could I live?” and they turn into tragic, compulsive set of scenarios playing out in my head of them being dead and me being told, crumbling from grieve, so intense that I actually start grieving now and have to try to calm myself down and remind myself that they are not, it’s ok.  But it could happen, some ugly little bastardly part of my brain adds in at those times.

It’s tempting to say “SHUT THE HELL UP!” to that ugly part of my brain, but I’ve found that being ugly back to the ugliness just makes more overall ugliness.  It just feeds it.  I think I need to find a way to be nice.  This is hard, in part because anger and prickly hostility is a tool I’ve used that makes me feel strong, stronger than sorrow or empathy for someone who is hurting me, even when that someone is myself.

That ended badly

Well, I had a little panic attack yesterday.  I wonder if I hadn’t fought it if it would have been over faster.  But that’s me, I fight.

It started, I think, with just a general jittery feeling.  I was outside having a smoke and I couldn’t stop bouncing my legs.  I tried, I could stop when I concentrated on it but as soon as my attention wandered, the jittering was back.  Then I took a shower, feeling keyed up.  While showering, that keyed up feeling built and built, I noticed my heart was racing, my limbs felt heavy and like they had warm sand or liquid in them, my throat started to feel tight.  I told myself “Ok, you’re starting to freak out…focus on now, washing you arm.  this is normal, you do this all the time and you can get through it.”

Sounds so silly now, but at the time, it was a major accomplishment to get through that shower and subsequently getting ready to go out to therapy.  If I hadn’t been going to therapy, or something similarly important, I might have canceled.  I was tempted.  Driving sucked.  I took the long way to avoid the “scary” roads that give me pause even when I’m well.  By the time I got to therapy, every muscle in my body was tight, rigid feeling, achey, vacilating between that feeling and feeling that warm sand/heavy feeling again.  My head was killing, and I know it was from clenching my teeth (which I was trying really hard not to do) and from neck and shoulder tension.  But there’s only so much you can control when this is happening, especially when you’re driving.  I tried listening to the radio, but boy, yesterday was a high anxiety news day and the public radio local chitchatty talk show was doing a fund drive…that’s not the sort of rhetoric to relax to.  They’re trying to drive up interest, rally, alert, excite.  I needed calm happy voices talking about things like attendance policies in school or some other trivia.  Nope.  So a stressful as hell ride.

This morning, I’m feeling very similar to how I felt yesterday, so I took a half a 1mg Ativan that my primary care prescribed last night.  Hoping it helps.  Hoping it doesn’t constipate me too badly.  Please let it not, that will only add to my anxiety and stress right now.

bad morning, a retrospective

I feel like shit today.

Not so much physically, although my hip is killing me but it’s “just pain”.  It makes it hard to walk, it’s just there, it’s something I can try to tune out if I’m not moving around.

What feels like shit is my brain, my spirit.  I was trying to describe it to my husband, trying to think of how I will describe it to the psychiatrist I am seeing Monday.  It’s hard.  The anxiety is easier to describe, it’s so pointed and abrupt, so obviously not ok.  The feeling of dread, of unceasing worry about hypotheticals which should have little to no place in my day but which pop into my head unbidden and unnerve me deeply, leave me feeling as if this terrible thing has just happened or is imminent, as if there are warning signs of it all around me.  It’s response without stimulus.

The depression, if that’s what it is and jeez if it’s not I don’t know what else to call it, is different.  More nebulous, more insidious.  It’s a sapping of will, a dwindling, an absence.  Will is what I have relied on for so many years, and it’s a strong will I usually have.  Thank god it is, because with the health issues and the PTSD, I really have had lots of call to use it to pull me through the tough times, tough sensations that make it hard to get up and go, to do things, to occupy myself, to keep my attention focused (more or less well, but at least in a way that feels properly effortful, right, and good), to follow through with things like making and eating food, daily tasks we do even just for maintenance of self and environment.  Silly me, I didn’t know this will was apparently finite.  That someday I would reach for it without even thinking, as I do, to move myself to do the things I need to do despite the daily elements of my chronically ill life like fatigue, dizziness, nausea, pain, anger, despair, shame, and it would just be absent.

Today, it is absent again.  How do I define what it feels like to have this absence?  How do you describe a void?  It’s harder than describing the additive symptom of anxiety.  Describing the void, it seems like the best you can do is describe the borders of it, the things that bound that space, and then just point and say, “and there is where SOMETHING should be but it’s not”.

I’m still perplexed by the onset.  I like to know where things came from, why they came about, mostly I think because those offer clues to how to address them.  This…did it come about from lassitude, the necessary lassitude that comes from having a fatiguing chronic illness which occasionally rears up into some set of acute, disabling, and ugly symptoms…the crushing weeks of nausea I experienced cyclically from January through March this year?  I was necessarily less active, had to cancel more, plan less, and now I am experiencing the absence of Things to Do because I had to cut so many things then that now there is little left and little to move towards.  Work, volunteering, friendship activities.  If so, I just need to go out and do those things now to fix this, right?  Wrong.  The parameters are still in place, i.e. I am still sick and so I cannot take on a full time job, I cannot even guarantee that I’ll have the stablity of health to make regular attendance at a part time job.  The best I can muster is work on finite short term projects that I can do from home when my health allows.  The irony that my physical health would have allowed me plenty of that but that I cannot find or get it these days is not lost on me.

So then lacking that, I should focus on other things with more lax “attendance requirements”, like volunteering.  I tried that.  I was in touch with the library folks in January and February, there were attempts to place me as a tutor with a student, and they all failed.  Between the weather and my cycling nausea (which, reading back in those early february emails I am reminded I optimistically thought of as a stomach flu, until it kept coming back), I was unable to make this happen.  And so that volunteering work went dormant.  I started PT and OT at the end of February, still feeling quite terrible as I recall.  That was PT twice a week and OT once a week, and that wasn’t including any other medical appointments I had in there (follow up on my check in with my primary care which included a visit to the nephrologist, a day full of appointments at the BATH for podiatry, Allergy, and something else…dentistry?  A filling maybe?  I think so.)  That takes me into March.

March was full of medical appointments.  Trying to get to the bottom of the nausea, PT, OT, Disability forms, that was March.

April started with a sleep study.  A follow up appointment from the neurologist I saw, which itself was a follow up to a follow up to a follow up (I went through four neurologists total at one clinic because they kept leaving, I had started with one who did autonomic function and sleep medicine and when he left I got passed around to the rotating crop of sleep only neurologists).

In April, I wanted to try to get out more socially.  The snow was finally melting away so getting out of the house and getting around was more of an option.  The library volunteering opportunities were limited, I was not going to take on another class, not after the last four months of acute awful flare ups, but I was emailing with a new volunteer who would be teaching and whom I was hoping I could help out as an in class tutor.  Meaningful work, occupation, without as big or formal of an attendance requirement.  Then that was put on hold, reasons outside of my control.  April also brought family visits, and all my energy went into preparing to host and hosting, and then recovering from hosting.  While recovering from a big family visit in mid April, I had an appointment with a new neurologist, a last ditch effort to find someone to help me investigate and manage the autonomic issues that have come to a head over the last two years or so.  She was…ok.  Not great.  Nice, nice enough but she seemed to not really be inquisitive or eager to dig at all, just told me that this comes with ehlers danlos, Ok, so we’ll go with that.  Fine.  She wants to see me in August for a follow up.  Ok.  Fine.  Follow up on what, I’m not sure.  Take my blood pressure sitting and standing twice a day, fill out a survey cataloging my symptoms, except they aren’t all on there, some of the ones that cause the most disability, the most inability to work.  I found myself wondering if she really knows what she’s doing or if she’s just become some kind of “nice” EDS/autonomic doctor who treats us as a sort of hobby.  This impression was not helped by the fact that she recommended a gluten free diet despite my having tried that several years ago and consistently testing negative for celiac disease, and the fact that if I eliminate gluten from my diet, I will have considerably fewer calories to my day.  Despite all this, a doctor who insists that I would benefit from a gluten free diet on only the flimsy reasoning that “some of my patients report feeling better on a gluten free diet” can’t help but ring my charlatan bells.

Early May.  My husband’s parents visit.  More preparing for hosting, hosting, and recovering from hosting.  I think this is when I am actually starting to feel some increased anxiety, decreased mood.  It’s so gradual, so easily dismissed as a bad moment, that I don’t realize it’s a pattern yet.  But I recall in May having to make more of a conscious effort to do things like regulate my mood (I’d find myself in a bad mood for no really immediately good reason and have to choose to put it aside and focus on the here and now, and to essentially choose to be ok, to be in a better mood), I also think this is around when the anxiety started ramping up.  Fears that my husband would die, fears about retirement and having no money, shit like that. I assumed they were all grounded fears, that I was just feeling extra vulnerable for some reason and that it would pass.  I didn’t realize it would grow.

May brought more talk of tutoring/teaching, but a request from the library staff to “put it on hold” until after their recognition event in mid May, which was ok because in mid May we had my sister’s graduate commencement (which was an hour away and involved a half day trip with packed food and time away from a couch where I could rest if I had to), then came a week with husband’s medical stuff, another early half day at the hospital where he got double scoped, and I sat without much for food in the waiting area, feeling crappy, not able to lay down, keeping my feet up as much as possible and pounding cold water for the temporary blood pressure elevation it brings.

The last week of May, I finally was able to reconnect with the library staff.  We made plans for me to meet weekly with one student to tutor them.  I spent the next TWO WEEKS trying to get in touch with that student to set up plans to tutor, but to no avail.  Finally, the library staff connected me with another student, which brings me to last week.  And last week was when the lack of things to do, the occasional visits with friends for coffee, the days at home with nothing, not even PT or OT to break it up, all of it, started to pile up on me.  I had been slowly decreasing how much I was cooking and therefore how much I could eat, but I found even when I forced myself to prepare food, I was throwing much of it away at the end of the week uneaten.  I just didn’t have an appetite.  I was losing weight.

Then came the sex.  Husband and I tried one day I think two weeks ago now, it just wasn’t happening for me so I gave up and, er, took care of him.  Then the next week, this past weekend, I thought I’d give it a go anyhow.  And it just…didn’t work.  Just didn’t happen.  I’d say it was the equivalent of impotence in a man.  That was devastating.  The days leading up to it had been particularly bad for anxiety and that sapped will feeling, restlessness with a side of sucking inability to motivate myself to do or stick with anything I tried to do to alleviate the restlessness.  Did I mention the anxiety?  That then turned into anxiety about the anxiety, about the incurable restlessness, the sapped will, the not eating, the lack of attention or ability to derive even satisfaction (normal for me) from doing the small and big (for me) things I need to do to take care of myself, my pets, my household.

So this weekend it all came crashing down.  I cried a lot.  I couldn’t stop once I started.  I was afraid of all sorts of hypothetical situations, worried that this was a permanent change.  Horrified that I hadn’t noticed this creeping up on me, how out of touch with myself I had been.  How easy it was to explain away each loss of ability or in the case of the anxiety newfound ability to scare the shit out of myself, as something situational and transient, controllable.  I let this happen to myself, right?  I made it happen.  I stopped tending to my psyche and sexuality, maintaining them because for much of January through March, I was just surviving.

Or did I?  Because here’s the thing.  I’ve had bad, bad,bad times before.  And this has not happened.  This feels very alien to me.  Even for “bad me”, this is not the type of bad me that I get.  I get mad, I have uncontrollable rage.  I act out aggressively, verbally, sometimes physically.  I hit things, I break things.  I am morose and moody and tumultuous.  I get more promiscuous than usual.  I know these bad things well, I’ve spent a lifetime dealing with them and finding ways to manage them.  This is new, very different.  And when I think back on the past few months, and what was going on that lead up to this point, there is one thing I am reminded of.  In March, late March I think?  at the advice of my GI doctor in response to the cycling crushing nausea, I increased my Reglan.  I had been taking 10 mg 3 times a day, often getting away with twice.  She recommended an increase to 10 mg four times a day, and I did it.  Not without some worry, mind you, but I did it.  I upped the med because the nausea was so crushing, it made me feel suicidal.  The thought of being a slave to the nausea and how it robbed me of being able to feel anything good was too much, so I upped the Reglan despite the feared side effect of tardive dyskinesia or other dystonia, which I had good reason to fear since in late Fall I started having muscle spasms in my face, around my mouth and under my eye.

But what I forgot to be vigilant for was the other set of side effects of Reglan.  The anxiety and depression side effects. It just didn’t even cross my mind.  And I wonder if that’s at least a part of what’s going on now.  One bit of evidence against it is that since my appetite decreased, I didn’t take it four times a day on days when I didn’t eat three “big” meals.  But that was sporadic.  I have, for the last three nights, stopped taking my bedtime dose.  That plus the fact that I am now officially only eating twice a day means I am now taking half the dose I had been taking since March, more like what I was taking before.  So far, I’m still not ok, but I’m trying to stay hopeful that maybe it just takes a little while to get out of your system.  It came on slowly, it may have to retreat slowly.  Reading the internet, when I can be moved to even bother doing so (again, very weird for me), you’ll find patient forums where people claim that Reglan gave them permanent mood disorders, which is scary but I try to remind myself that reading patient forums is just plain scary, that these are many of the same people who report placebo effects of gluten free diets with such confidence that their otherwise well trained neurologists believe them and pass that shit on to other patients.  So I try to take it with a grain of salt.  But still, it is worrisome.

Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.