Project #fuckpots progress

I had one of those mental clarity moments last month that went something like this: nothing I did to make POTS go away so I felt consistently better was doing much good, so I decided, that being the case, that I had to figure out how to have a life anyway. My motto has been “If you’re tired, do it anyway.” (First modification: “If you’re tired, try it anyway, but it’s OK to rest if it really is too much”!)

I really don’t think there’s much help for my POTS except symptom control and daily lifestyle maintenance. I’ve tried all the obvious meds without much success, or at least none that is worth the side effects. That leaves me with salt, hydration, exercise, and rest.

In other words, waiting until I feel better to do anything will result in nothing ever getting done.

I happened to get a new planner (Passion Planner), coincidentally, which builds on overall goals and has you break them down to monthly and weekly goals. Goals to a chronically ill person are a tricky thing to fathom because largely your goals get really short-term (“get out of bed, don’t fall over all day, and then be able to get back into bed” has summed up my goals for some years now). I had completely lost track of actually accomplishing anything and didn’t have any concept of it. I literally could not think of much that I wanted to do other than not feel sick all the time, which, as we have established, is an unreachable goal.

But the planner inspired me to at least think about it, and it took a couple of weeks, but I did ferret out some things I’d like to work toward. It’s painful to realize that you can’t do anything full steam ahead, and planning anything is not a normal process when you have an illness to contend with, so I’m gradually experimenting and figuring that out: notably, you can make all the plans you want, but there’s no point expecting the plans to go the way you think they will, because they absolutely will not.

Lessons learned so far:

  • Slow progress is still progress.
  • If it doesn’t fit into my daily planner space, I’m not going to have the energy to do it anyway.
  • More important than crashing through to finish a goal is being upright and having a little energy at the end of the process.
  • Many things turn out to not take as much time or energy as I think they’re going to.
  • It’s worth attempting a thing I think I’m too tired to do, because often I can still do it or at least do part of it. (Again: slow progress is still progress.)
  • I absolutely have to build in resting contingencies. This is key. With my POTS at least, once my fatigue reaches a certain point I just can’t get up anymore, for DAYS, which I hate, so I just can’t do anything for very long without resting. And by “resting” I mean “lying down flat and not doing anything for a while, sleeping for a bit if possible.”
  • I shouldn’t use all my unexpected good days to check things off a list, although that’s tempting; good days should sometimes be spent just enjoying feeling well!

It is a bitter pill to swallow when you start accepting on a gut level that you really aren’t going to be able to do what you want to do (if you have the energy to want to do anything to begin with) without a lot of modification. At least I am now in the trial-and-error process of learning how to LIVE with POTS, instead of just exist with it.

My soul fell, today

Today, I felt about the worst I have felt since POTS. I felt crazy with exhaustion and brain fog. Brain working a second behind what was happening. Hopeless. Heavy. Uncoordinated. My vision swam. My ears screamed. Any movement made me feel like I was trying to stand up on a pitching boat. I did what I could not to act that way, and I can do that to a large extent…people want to see normal so they will stretch the boundaries a little to make what they see LOOK normal. You really can feel that bad and no one will notice. I really can stagger through life wondering if I will get down an ENTIRE hallway without incident, I really can wonder all day if I’m having a stroke because I can’t come up with what I was just going to say or am not entirely sure where I am on a route I’ve driven a hundred times. I really can feel so tired that every time I sit down I’m not convinced I’ll be able to stand up again. And I can do that without a single solitary soul having a shred of sympathy. I don’t know if they’re just tired of me flitting like a shadow, half there, if they can’t understand how sick a person can feel and still be upright, or even if they think I’m lying. If when I’m NOT lying on the floor, there must be no cause for concern. (I did not lie on the floor today because I seriously doubted I would be able to get up if I did.) I just feel very tired and, worse, hopeless and very alone right now.

Doctors: POTS is not a thing

I’m pondering this week why it is that doctors mostly seem to disregard POTS and any symptoms of POTS. Why is this such a battle?

My PCP sent me to the ER a few months ago because I had more bizarre symptoms than usual: worse chest pain, increased dizziness/confusion, and sudden all-over pain except for my hands and feet, which were numb and occasionally blue. That visit was harrowing even at the time. The doctor was, simply, a bitch. She didn’t let me finish a single sentence and when I couldn’t produce a photo of my blue hands she rolled her eyes and just walked out of the room. Nobody asked for a health history or med list. Not surprisingly, nothing helpful happened and I went back home feeling exactly the way I did when I went there.

Well, it’s not the first or even 10th time something similar has happened, so I was pissed off about it but resigned. UNTIL. I started getting bills my insurance would not pay because the ER said I went there for a non emergency. In what universe are those symptoms a non emergency? I have bizarre symptoms on a daily basis and would not bother wasting my time unless I was seriously concerned. Even just common sense would dictate an EKG and orthostatic vital signs at a minimum for those symptoms. But on top of that I spent years as an ER nurse and can state with some assurance that those symptoms would warrant cardiac enzymes and at least the suggestion of a neuro workup of some kind. Confusion and numb limbs are kind of scary.

I found out not too long after that that I had serotonin toxicity, if not serotonin syndrome, and that is a Bad Thing that really can kill you.

This situation has pissed off my PCP and she is writing a letter to my insurance company, so we’ll see what happens there. At least I have SOME doctors in my corner!

But why do so many of them roll their eyes and get so hostile? I have theories. The main one is that particularly in an emergency room, if they can’t easily identify a possible cause of symptoms that they can’t see, it’s too much of a hassle and much easier to decide you’re just nuts. That’s pretty obvious. And if you actually HAVE a history of anxiety, you’re doubly screwed.

And what do they do when you go to an ER? They put you in a bed. If you have POTS, being put to bed solves the problem temporarily. The longer you lie there, the better your vital signs look. To your average doctor, a good-looking monitor means the patient is fine. What I can’t explain is why, when they’re told you have passed out or have an ORTHOSTATIC issue, they don’t even check this out. Orthostatic vital signs should be the standard of care with these complaints, but failing that this is a very easy thing to verify: just let me stand up and then watch what happens to my vital signs. My own doctor even told me “the next time this happens make them watch while you stand up and let your vital signs get all crazy.” It’s too bad this is her best idea and that I have to do this, but it probably is the only way to “prove” that I’m not nuts.

The problem with that, at least with this one visit as an example, is that I felt too sick and confused to advocate for myself. Strategic error: TAKE SOMEONE WITH YOU TO THE ER. I’m used to functioning while I feel like death warmed over and forcing myself to act like I feel fine so I do that automatically, but that isn’t a good way to convey that I actually feel like I am dying.

Which leads me to another possible problem. Doctors are trained to consider patients’ REACTIONS to their complaints. Like, it would be noteworthy if someone came in with their leg off and seemed unaffected by it. People who complain of 10/10 pain while they’re texting and eating fast food are probably full of shit. That is a reasonable thing to consider, obviously. But if you live every day with pretty miserable symptoms you can’t go around acting shocked and appalled by how bad you feel. You learn to normalize it and not appear miserably ill. You get so used to your fairly alarming symptoms that you do calmly discuss them. That may look clinically odd. In fact I’m sure it does.

But I don’t see a good solution. Am I supposed to work myself into an emotional frenzy just to get a doctor to believe me? That seems histrionic. And if I do make myself look really anxious, won’t I run the risk of contributing to the conception that I’m just an anxious mess?

I don’t know how to solve any of this. Until doctors start actually listening to me and believing what I say, I predict having to just fight with them all the time. It’s very concerning and exhausting.

Life, or shell? You be the judge

I have some situational depression going on here, and I’m afraid to mention it to anyone because (a) then they will write off all my physical symptoms to depression and (b) the only thing that they could do is throw antidepressants at me. I’ve already taken All Those Meds and they don’t do a thing. Because I don’t have depression.

I’m just tired. I’m so tired, all the time, that even trying to think of something I would enjoy doing makes me feel more tired. Anhedonia? Maybe. But pretty much anything other than lying down somewhere makes me so much more tired that even thinking about doing it decreases the possible enjoyment. Here’s how it works.

I think, I should read a book. So far so good. To do that I have to get up and go GET a book. Right away I’m stalled at “get up.” IF I can get past that and actually go get a book, the next obstacle is how to read it. If I lie in bed holding a book my hands go numb within 5 minutes. So then I have to sit up, which is all right. But then there’s the vision problems and brain fog. Some days my pupils stay dilated for no good reason and I can’t see very well. Most days my vision is just randomly blurry. That complicates reading. And not infrequently I just can’t concentrate enough to read. It’s tiring.

Cooking? I used to love to cook. And I would feel better if I could eat some healthy food. But this is a disaster. Not only does this require a trip to the store at some point, which is one of my worst chores because of all the walking and standing still, but it also requires a lot of standing in the kitchen, plus bending over to get stuff and then standing up again. And there’s the random nausea and bloating thing so I know if I manage to get through all that and cook and eat something, I may feel sick afterward anyway.

So that’s how my “anhedonia” works. I don’t think that’s what it is. It looks like depression, but I really think if I could figure out how to get even a tiny little whiff of energy ever, I wouldn’t be this way.

Work humor

My supervisors have their moments. I was in their office when in came the secretary, who said “you guys, I need help. I’m confused.”

Supervisor 1, immediately, deadpan: “ALWAYS wipe front to back.”

Supervisor 2, also not missing a beat: “Remember, when you’re wearing your helmet, you cannot see what’s behind you.”

Secretary looked confused and backed out of the room. I’m not sure her question was ever asked or answered.

POTS and serotonin

I’ve been totally preoccupied with medical crap the last 2 weeks. My PCP started testing me for carcinoid syndrome because I reportedly turn red when I’m about to fall over, and the 5-HIAA level was like 20 times the normal level, so she did blood work. On that my plasma serotonin was really high but chromogranin A was normal, so the endocrinologist says it’s probably NOT carcinoid but rather some exogenous Thing increasing my serotonin. I did find 5-HTP in a supplement recommended by my naturopath so I’ve stopped that and we will repeat labs here in a bit.

PCP also wondered whether my worsening symptoms in the last week are actually serotonin syndrome, and that’s a good theory but there’s no way to find out. My bad symptoms (tachycardia, brain fog, etc) qualify for both serotonin syndrome and dysautonomia; I do think it would be odd to attribute tachycardia to serotonin syndrome rather than POTS since it happens only when I’m upright. I would think with serotonin syndrome my heart rate would not be 60 all night long while I’m lying down. But really I have no idea, and neither do my doctors.

So I’m wondering if this high serotonin thing is just another jacked-up dysautonomia thing. I found one resource saying that people with autonomic dysfunction have problems metabolizing serotonin, but I can’t find any actual medical research to support that. I found another resource saying that there is a strong correlation between dysautonomia and MTHFR/methylation issues, which I also have, but it can’t be very strong because I can’t find much about it.

On a related note I have to wonder about my mood and the serotonin. I weaned myself off all psych meds as of 4 months ago (except, I suppose, for the 5-HTP supplement thingy) and overall my depression has been much better. I’m guessing that had anyone checked my serotonin while I was taking Prozac, Abilify, etc., it would have been a lot higher. It seems that with all that serotonin I should be a very happy person! But no. I can’t sort this all out. I feel sad and hopeless still, but I also have a pretty new chronic illness diagnosis and lifestyle-limiting symptoms, so to me it would actually be kind of weird if I DIDN’T have some reaction to that.

On meds: I tried clonidine for a couple of days and it put me into a HYPERtensive crisis. I can’t figure that out by any means. Except, again, it’s just some weird shit with my body that I can add to the already-large category of weird shit with my body. My blood pressure is not really high OR low on its own, but it is stuck at a low pulse pressure which I believe relates to a lot of my symptoms. My diastolic is a BIT high and my systolic is a BIT low, but apparently I should stop monkeying with either my heart rate or my blood pressure because doing so has in every case worsened my symptoms.

Finally, I am utterly exhausted from monitoring myself and my symptoms. But I currently believe that monitoring my symptoms is the only way to go; sometimes they correlate with weird vital signs and sometimes they don’t, so paying attention to symptoms and triggers is about the only reasonable way I see to approach an even remotely normal lifestyle. Falling all the time is not a normal lifestyle, and the only way to avoid that is to constantly monitor how I’m feeling. And all that physical introspection is just wearing. I don’t know how to fix that. I just hope that I’ll get used to all of this and the monitoring will become more automatic, that this will become just part of my life and not my whole life.

Can’t work this week

I’m feeling shitty because after feeling pretty horrible for the last 2 weeks, but managing to go to work, I now feel so horrible that I couldn’t work yesterday and have had to call in again today. Fucking POTS and/or carcinoid and/or whatever else is conspiring to steal my life. Dizziness is so severe I can barely just walk around in my house, and I have a TINY, tiny house. Brain fog is so horrible I can’t even read a book.

It sounds like it would be nice to have an excuse to take off work, but in reality the suck factor is fairly severe. I can’t do anything. I’m tired but can’t sleep all the time and don’t particularly want to sleep my life away anyway. I’m too dizzy to even sit up for very long, and having to lie down when you’re not sleeping is a paramount example of boredom. I’m so pissed at my body. I mean just get up and DO something, for crying out loud.

Is this what chronic illness does to you? Just steals away your life, a little bit every day? I’m railing against just being unable to do things I feel like I should be able to do.

On the carcinoid front, I had more labs drawn yesterday so just more waiting on those results. My PCP sent a referral over to the nearest Big Medical Center to see if someone there has any ideas. I did finally get a glimpse of my own “flushing,” which until then I’ve just heard about. I felt like I was about to fall over and felt hot, but was safely seated, so I took a selfie and sent it off to a coworker. She said yes, that is what people are talking about. I thought my whole head must be red, but it just looks like my cheekbones and chin are stained red. It does look pretty weird. I’m a very pale person normally. But it really doesn’t look all that dramatic to me compared with what I was imagining when they described it.

So here I am, awake and with nowhere to go and an empty day facing me.