Same

Woke up today the same as yesterday AM.

I had gotten through yesterday ok though.  Not great, but I made it without taking more ativan after the 0.5 mg in the AM.  No retching after that first round, prior to the ativan.  And I was fine last night, except for the massive headache and the super low blood pressure again (71/forty something).  So we’re back to that pattern.

Today, I woke up stressy.  My husband asked what the focus of the anxiety is in the AM.  It’s hard to say, it’s less concrete than it had been…I’m hoping that is a good sign.  Less concrete and so far, (oh god please let it not progress) less severe.  But in general, it’s about health, and my food intake, which is abysmal.  I’m barely making 900 calories a day, and that comes entirely from supplemental shakes, and I’m still having upper GI motility issues even just with those.  So that is the general focal point of my anxiety when I wake up, that and fearing the day will be another bad one.  I try to use positive self talk during these morning moments, but there’s only so far that’ll take you when your body and brain are just totally jacked up.

So I got up at about 6:30 after being awake but drowsy for at least an hour, still super sleepy, but paradoxically amped up, and increasingly so as the morning wore on.  Despite having the muscle tension in my arms and shoulders (which I feel as an unpleasant warmth), I didn’t take any ativan.  I managed to make it until 10:00, then the retching started, just out of nowhere.  It’s different this time from last, in that I’m not consciously having deeply disturbing thoughts when this happens now.  It’s more of a bodily sensation and a general feeling of difficult to check concern and worry (who can blame me at this point).  I did my deep breathing, relaxation, read for a while, all that helped I suppose, but my BP was still high (for me), showing that I was still clearly stressed.  Then, when I was up and in the kitchen, I think I had just thought that I should drink another half a shake, and then the gagging started…then the retching.

Hence the 0.5 Ativan shortly after, at around 10:00.

I wish I knew what kept this in check for the last few weeks.  I know I had been taking ativan on and off for nausea during that time, but I wasn’t waking up all stressed to the max, and I was often making it until early afternoon before the nausea hit me hard.  So I can’t say that it was the ativan that was keeping this in check during that time.

I’m still wondering if this is some kind of rebound/withdrawal from the Lyrica.  I know I wasn’t on it for long, but it had quite an impact on me and this started back up after I had taken it for three days then stopped it (after the week and a half to two week hiatus, it started a day or two after I stopped the lyrica).  If it is that, then I have reason to hope that it will perhaps go away again soon.  I really hope so.

Today, I’m trying to decide if I should go out with my husband to a get together at a co-worker’s (husband’s co-worker) house.  It’s supposed to be bloody hot and we don’t know these people well enough to know how well they host…i.e. can they accommodate someone who needs to stay cool or who will get sick and possibly pass out?  But I prefer the idea of doing something today to another day of sitting inside trying to find ways to keep busy and keep focused on something other than my rotten health.  So I may try it.  We’ll see.  I still have a few hours to decide.

Oh, and my GI doctor, who I paged yesterday like she asked me to…she didn’t call back.  Again.

Advertisements

getting by

I’m back on the ativan, for the nausea and vomitting.  I think I caused the nausea myself, trying to hydrate up my super low BP, I drank fruit juice and took electrolyte tablets.  I am thinking the electrolyte tablets were too much for my stomach.  If this is what it is, and if it holds to the pattern (I think this happened before, it feels very similar to the cycling nausea from January to March), it’ll take about a week for my stomach to heal.  In the meantime, I’ve lost more weight and I need to be able to eat (and hydrate) so I don’t end up back in the ER.  So I am taking low doses of my ativan.  I was prescribed 1 mg three times a day.  The most I’ve taken is 2 mg, divided doses, i.e. one mg in the AM, then a half in the late afternoon when the nausea comes back and another half before bed.

Yesterday was tough.  I was feeling better BP-wise, and had the nausea under some control, so I went out to do an errand and visit a friend (I have a friend visiting while my husband is away, she drove us out and around yesterday, I’m still not up for driving).  Healthfood store for vitamin K supplement and licorice supplements (I figure it’s supposed to help your stomach and I could, quite frankly, use the blood pressure elevating side effects).  Then over to my other friend’s house for a short visit.  Very short.  I got dizzy, headachey, super fatigued, and nauseous and had to leave.  Unfortunately, as short as it was, I waited too long and forgot we needed to stop somewhere to get my visiting friend dinner.  That was a bad ride home.

Some retching that evening.

And less food that I’d like.  I’m down over 10 lbs now.  About 15 total since this shit all started in early June.

And my GI doctor still hasn’t called me back.  Not that she’s much use, but I figured I should update her and let her know (she told me to call).  Jeez she really sucks.

Husband’s coming home early from his conference tonight.  I’m deeply grateful, since my visiting friend can’t stay as long as she’d initially thought, which was going to leave me all on my lonesome tomorrow and I’m still feeling crappy enough on and off throughout the day that being alone really sucks.  I know there are people who have no other option, but if you did have the option, you’d take it.  So I’m taking it.

It’s probably going to be a long medical week next week.

Wish my good luck and some extra spoons.

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.

demystifying

I’ve decided that when I talk to healthy people about my illness, I’m going to start using MS as an analogy.  This is because most people have never heard of dysautonomia or Ehlers-Danlos, but they have heard of MS.  There are TV shows and movies with people who have MS.  They may even have a friend of a friend of a cousin who has it.

This is not scientifically sound at all.  But then human cognition isn’t really rational.  We like to think it is, but it’s not.  We are subject to many logical fallacies in our thinking, and have to train ourselves NOT to think like that.  I believe that this tendency is most apparent in our social thinking, and I suspect it is facilitated by if not exactly because we don’t tend to think about our social thinking.  How we “feel” about people is how we feel, not how we think.  We might sometimes use cognitive words to describe the states and decisions we make about people, but how much more common is it to discuss those in terms of feelings?

So when you’ve decided that it’s time to disclose your illness, you are left with the daunting task of breaking through ignorance and I think that one tool that can help is analogy – specifically, linking the disease to something that is familiar.  My hypothesis is that the more familiar a known disease entity is, it is more accepted it will be as valid.  Hence, “It’s like MS…” with the caveat of “except it’s specific to the part of my nervous system that controls my blood pressure, heart rate, sleeping, and eating. So I get dizzy and faint when I stand up for a while, I get really tired from doing very little, and there are a lot of things I can’t eat anymore.”  I don’t need to include “going to the bathroom” and “having sex” because really, they just don’t need to know that.  Well, the bathroom thing can be relevant if you’re trying to explain to a supervisor why you need frequent breaks or an altered work schedule, but I’m talking more about the less formal disclosures to coworkers who otherwise have no basis of understanding why you can’t come to “super fun lunch time” and think you’re just being snobby.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

guts for garters

That is one of those phrases that is, if you stop and think about it, quite awful.  It is also one that pops into my head when my guts start spasming.  As they are now.  What prompted today’s trick?  It could be that I ate breakfast (how dare I?!).  Apparently that is still forbidden, eating before 11:00 AM.  It could be work stress.  I just was put on notice yesterday that the departmental staff appreciation dinner is in June (a very ill timed day in June) and that we are ALL expected to go.

Go and do what?  Go and watch other people eat while my window of being able to eat anything trickles away?  Go and stay out and up late on a Monday, the start of a week and a particular Monday that happens to be the day before a conference I have to go to half-way across the state?  Go and not drink but watch other people drink and get drunk, and socialize with each other but not with me  because I’ve been judged to be not a team player?

Golly.  Why not.

So my guts are in an uproar.  And so a work at home day has turned into a day on the couch.  I refuse to feel bad about this.  As soon as I finish this post (while I wait for my yummy magnesium powder drink to cool off enough to gulp down), I’m changing into my jammies, rounding up my kitties, and flopping on the couch with a heating pad and some netflix.  There’s my employee appreciation.  And they can have my guts for garters, for all the good it’ll do them.

no, thank you

I am not good at saying no.  I like to think I am, but truthfully, I am not.  I have discovered this as I have gotten sicker.  I suppose I should have noticed it way back when my blood sugar and endometriosis were my biggest problems.  Specifically, the blood sugar.  I have passed out more times than I’d like in public due to not saying “No, I don’t want to keep walking around looking for a place where EVERYONE wants to eat.  I need to eat now, you all can stand out here and debate it but I’m ducking into this convenience store and buying a snack….”  There were a few times in my mid twenties when I tried this, always inelegantly.  And that is another example of being bad at saying “no”, doing it but doing it badly.

That’s, unfortunately, still where I’m at.  My health problems mean I have to say “no” alot.  These days, I often preemptively decline by avoiding situations which I suspect would lead to a whole bucket full of poorly executed “no”s or worse, going alongs and ending up with hell to pay health-wise.  This gives me the reputation as someone who does not WANT to, rather than someone who cannot.  I’m not sure there’d be a hell of a lot more understanding for me if it was the latter, but I can tell you there is zero for the former.

E.g., my boss sent out an email yesterday letting the office know about a food discount event going on at a local touristy landmark.  Local as in normal healthy people could walk there, wander around, and walk back without it destroying their day or week.  Not local enough for me.  And not something I think I can do.  Walking there and back is one thing, but add in the wandering around a food court full of stuff I  can’t eat anyhow during my lunch break, and if I choose to bring my own food so I don’t bottom out bloodsugar-wise, I will reduce my stamina but a significant amount due to having to lug the extra weight around while I walk and wander.  So this is something that seems like a clear “hell no” but I am reluctant to reply and say that.  I guess I’d like to better understand her point in inviting me.  I’ve discussed these limits with her, it’s come up in the context of work related social events that my boss’ boss’ boss holds periodically throughout the semester.  Does my boss think that my reluctance to attend those big boss events is based in something other than physical limitations, and does she therefore think that I’m like some faker debutante waiting for just the right invite to get off my ass and flounce off gleefully and spiritedly?  Or is she just being polite in inviting her big fat crippled worker along to this particular event?  Knowing which would help me figure out how to say “no”, with some grace and dignity.

get well soon

An exchange with a friend and fellow blogger just now brought to light a sort of personal pet peeve.  “Get well!” and “feel better!” when said to people with chronic illnesses.  It just doesn’t work.  The sentiment is too easily heard as a command for the person to stop being sick with their chronic condition, a state of affairs they most certainly want but which frustratingly, and sometimes deeply depressingly, eludes them.  And to hear it said so glibly and casually, it can suck.  I know because I’ve been on both sides of it.

Of the two, I slightly prefer “feel better”.  My husband and I have occasionally amended it to “feel better, at least better than this…” but that only works between us because we have a good understanding about what my chronic health problems mean.  I.e. feeling “better” means only a lessening of whatever immediate thing is causing MORE distraction, disability, and devastation.  I.e. “good days” are days when the couch or bed is not your only sphere, they do not mean carefree, painfree days when one can engage in the same lovely ignorance of one’s body as the “normal” people routinely can.

Having a chronic illness means you sometimes “get better” but it’s often unpredictable and always fleeting.  And you don’t ever “get well”.   Wishes for you to do these things can come across as commands for you to push yourself beyond your very real physical limits, can come across as invalidating statements not of kind thought but callousness or outright meanness.  I wish it were otherwise, I suspect that often when people say it they truly mean just to say something nice.  Although when it comes to expressing their thoughts about illness, acute or otherwise, people without chronic health problems often betray their ugly thoughts about it.  “Oh I wish I had what you had,” a supervisor and mentor told me once, about my GI problems, “I could stand to lose some weight”.  Really?  You want this?  You want to not be able to eat anything without needing to run to the bathroom?  You want crippling cramps and gas and weight loss so severe and fast that your hair falls out and your nails and teeth get soft and you catch every infectious anything that comes within a mile of you?  You want to buy new clothes every month because the ones you JUST BOUGHT and only wore a handful of times don’t fit anymore?

I think it is my orientation, which existed before I got sick and didn’t ever “get well”, toward taking things literally. I am better than I used to be, but I still hear the literal in the sentiment…like an echo or a second voice speaking over the one that is attached to moving mouth articulating these blithe words.  “Get well!”  “Feel better!”  sound to me like demands that I throw away my crutches and walk, be healed!  Amen.  And when I don’t, when I fail to, I feel like I am letting these people down.  Like I will be judged.

 

way up north

I have something like a flu right now.  I say something like and not just “the flu” because while it feels very much like the flu (sore throat, fever, aches, headache, a bit of nausea) it feels like the flu at about 20%.  Now keep in mind, I have a quite recent memory of a very bad flu that left me completely unable to get out of bed for a solid week.  When I say this is 20% as bad as that, know that 20% is still plenty awful.  It started Tuesday morning.  This is the week before classes start.  And this week, my supervisor and coworker had decided that we’d all go on a field trip way up north to the Great New England Wilderness to give a day long mini-conference.  I cannot miss this conference.  Had I been involved at all in the planning, I would have pointed out that flu season and three days before classes start is perhaps not an ideal time for such an endeavor.  I was not involved in the planning.

So I’ve known about it for a while.  I made my plans and tried to take some solace in the fact that next week, I’d have two work at home days.  These work at home days were so crucial, more so since next week Mr. Patient is going out of town Wednesday through Saturday for a conference.  I had planned on taking those days as my work at home days and then one as a vacation so I wouldn’t be stuck getting in and out of Ye Olde Historic Northeastern City on my own.  The energy, time, and expense that this costs me is significant, it’s enough to derail me for weeks.

And then my boss dropped a bomb.  She’s going on vacation next week so my work at home days are suspended.  “Yeah, I’m gonna need you to go ahead and come in every day that week…” I found out right before Christmas break.

Fuck.

To recap:  By going way up north today, I’m being asked to do an exceptionally physically difficult thing today on even less reserve than normal (i.e. flu-like illness that’s gone on for 4 days now with no sign of relenting), then to do an exceptionally physically difficult thing all week next week.  This is a recipe for hospitalization in my book.  I am left wondering if my boss really just does not get it or if she gets it but waives it when it’s inconvenient for her.

lock out

I recently posted about the accessible door to my building being locked for an event.  I have since found that the security guards in my building had started locking the door routinely in the evening.  That is, the building is still open, services in the building are still accessible for anyone who doesn’t need that door, they are just not accessible for anyone else because the guards locked them out.

Why?  I asked.  Of course I did.  The guard told me “They told us to start locking it to save energy, but now that I know you need it I won’t lock it until I see you leave.”

Um…..no.  So I wrote to the building manager, who initially thought I was saying the accessible door was locked when the building was locked (?!) but said he would look into it once I explained that I meant only the accessible door was locked during operation hours.  A few days later, I checked back in. I was told that the building had no such policy but that one of the guards had proposed that they start doing locking the only accessible entrance to the building after the guards noticed that “too many non-disabled people were using that door….” and they wanted to save energy.

Savor that for a moment.  Let it sink in.

This isn’t the first time I’ve seen accessible come up against “environmental”.  In the summer, the powers that be at this same building decided they would set the air conditioning system to less cool “to save energy” and would shut it off at 5:00 because “no one is in the building then in the summer”.  This was sent out just after an email about employee summer hours, where you can opt to work late 4 days a week then have the 5th day off.  So much for no one in the building after 5:00.  The air conditioning email was peppered with environmental rhetoric, but it was clear that this was about money.

I’ve encountered it more casually too, a fellow grad student once chastised me for taking “the lazy box” (elevator) instead of the stairs on a day when I was in so much pain and so dizzy that I had barely made it in to school.  I guess that one wasn’t so much about environmentalism, but about fitness. Both appeals (to environment, to fitness) involve people assuming some higher ground to justify the ignorant and marginalizing behavior.  Both involve people making groundless and hurtful assumptions about other people’s abilities and motivations.  They are similar in that they are both justifications for discriminating against people with mobility impairments.  And while people have the right to hold their ignorant views, they don’t have the right to impose them on everyone.  They don’t have the right to lock the fucking door.