On victimhood

QOTD: The issue is not whether others see or care. The issue is whether we see and care about ourselves.

This caught my eye because I seem to care unreasonably about what other people think about how I feel. I get so mad when I am blown off by others, when they think I’m making it up, and when I don’t feel like they are paying attention to how sick I feel. I think in some ways this is understandable and unavoidable: when you feel like death you do want those close to you to acknowledge you feel bad. Witness any man with a cold.

But the quote makes sense. What point is there is convincing anyone else I have pain? The real problem is convincing myself, which sounds ridiculous until I consider how much time I spend acting like I am just fine and therefore not addressing what I need to address to NOT feel sick. For that matter I spend an awful lot of energy convincing others that I am NOT sick. I’m thinking of all the times it would be hard to explain for me to sit down when I need to, so I force myself to “push through” dizziness and hope that I don’t fall. Or weeks like this when I feel especially bad but don’t have time to rest enough, so I try to ignore my symptoms and flog myself through until I can have a day off to sleep all day.

It seems to make more sense and have the potential to result in more balance if I focus on convincing only myself of the gravity of my pain and symptoms and treat both appropriately. I know this sounds like emotional kindergarten, but that’s where I am most of the time. Especially with this chronic illness thing. My brain defaults to denial for almost every problem I’ve ever had, so unsurprisingly I simply revolt against BEING sick. I’m not sure how I go from that to being pissed that my friends don’t understand how bad I feel, but I manage it.

I don’t have a theory yet about doctors. I feel like I do need to convince THEM that I have whatever issue I’m there for, and I get really mad when they blow me off. The entire medical institution blew me off for years over what’s turned out to be POTS, and that still makes me angry. If you don’t have an easily identifiable cause for a symptom they can’t SEE, then their default is that it’s psychogenic. I understand they get frustrated when they test for all the obvious things and can’t figure out what’s wrong, but I don’t think that justifies their blowing me off. I’m not asking for drugs; I want to know WHY I am so often exhausted and hurt all over, in hopes that that thing can be fixed. (I’ve pretty much decided I probably have some autoimmune Thing that is hard to diagnose, because that situation seems pretty common and occurs all the time with POTS in particular.)

Bottom line is I need to become a self-care ninja and stop giving a fuck whether anyone else thinks I’m justifiably sick or not. Today I am exhausted and ache all over, so I know I have to pay really close attention to not pushing myself, to eating properly, and to resting. To hell with what anyone else thinks about it. If I get dizzy and need to sit down, then I need to sit down. That last part is the hard part for me when I’m working. I want to look like superwoman but am definitely not. I usually CAN push through dizzy spells without falling, but why take the chance? I’ve got to rest when I can and get really crazy and take a lunch break, for starters. We will see how this goes.

Needed: life balance

I have NO balance. I have a pretty busy and demanding job involving living humans, and it doesn’t leave much room for being sick. So the same thing happens every few months: I work too hard without resting like my body demands, and then I end up feeling so bad I kind of drag myself through the day from morning pillow back to the same pillow at night. Things slide. I don’t eat right because I’m too tired to cook, I don’t exercise because ARE YOU KIDDING ME, and the household falls into disarray.

I tend to prioritize work because it involves hard deadlines. There is no balance with my health. I try to do all the stuff I know I need to do to stay somewhat healthy and have some energy, but if it’s a matter of meeting a nonnegotiable deadline vs cooking dinner, dinner will unvaryingly take a back seat. And that usually works for a couple of days before I crash.

I’m having to take a hard look at my job. Overall I like what I do, AS LONG AS it’s manageable. Unmanageability comes in cycles, though, and my supervisor has no plans I can see to ever change that. I just watched her burn out another employee and not even say good-bye to her when she left, so I know I’m totally dispensable in the same way. I have no reason to think anything OTHER than her goal is to get the immediate Things done and screw employee retention.

Logically then I think anyone would wonder why I am doing this to myself. I find the devil you know is often better than devil you don’t know; why leave a job I typically like for one that may be even worse? The grass is not always greener elsewhere. I think MOST bosses are very happy to work people into the ground. This one tolerates me being sick, somewhat. That isn’t something to just toss away.

It depends on the day, really. Some days I’m so exhausted I’m just hatefully angry and ready to walk out. Other days I feel all right and as if I can handle things. This morning I read

We do not have to act in haste or urgency to relieve our discomfort.

I need to ponder that because my favorite time frame is “right fucking now.” I want things solved immediately. I want assurance that I will feel comfortable at all times, and I want that assurance RFN. It never happens that way unless I do something stupid, like rage-quit.

Working full-time with a chronic illness is kind of a bitch, and I have not figured it out yet, at all. When I need to rest it sometimes gets to a point where my body will rest whether I’m on board with it or not. I don’t know how to make this work other than to be really vigilant and not get to that point. And I don’t know how to make myself rest along the way when there are a bazillion things that all have to be done by a certain time. I’m not entirely sure I can figure this out or make it work. The dizziness and falling I can kind of work around, but the fatigue, I can’t seem to.

Right now today I feel like walking out would relieve a lot of discomfort: I could return to bed and sleep for days until I felt better. But that would be acting in haste and urgency and I eventually would feel better and regret what I did.

Got the blues

I felt shitty Thursday and Friday with POTS symptoms, then Saturday I woke up with normal vital signs but feeling like arse. I felt like fire was running through my veins. Everything hurt except my hands and feet, which I could barely feel at all; also my vision had gone funny and my muscles were weak, kept dropping stuff. My PCP told me to go the ER, which I did, although I don’t know why because the same thing happened that always happens. I’m pretty sure if I went to an ER already dead, they would still say it was just psychological. As a bonus, this doctor was a sarcastic bitch.

I’ve been in bed pretty much all weekend feeling like I’ve got the flu but without the fever or cough. I don’t have any theories for why I hurt all over and feel so weak (I can feel my hands and feet again). I’m so gloomy. Is this my life now? Feeling terrible a lot of the time with no reason behind it? I’m glad that POTS explains a good portion of what ails me, at least.

This ER doctor pissed me off by asking (sarcastically of course) what my internet search told me I had. Easy for her to be glib, but it’s pretty apparent to me that unless I have a pretty good idea what’s wrong with me and what might help it, I might as well save my money. I told her I didn’t need the internet to be concerned about strange neurological signs, but otherwise I was too tired and swamp-brained to argue much about it.

My lab results were all normal except for LOW BUN and creatinine, which I’ve neither heard of nor seen before. Her explanation was it could be liver or pancreatic disease, but since I didn’t have any signs of those there was no need to worry. How would she know? I got out less than one sentence about why I was there, she took no history, never asked what meds I was on, anything. Earlier today I tried to figure out what low BUN and creatinine could indicate, but other than the possibilities she mentioned there isn’t much out there. It’s when they are high that obvious things are wrong. Logical processing makes me wonder if it’s from drinking too much water, but I lack the necessary medical degree to figure that out. My lytes were all dead normal.

I hope there isn’t anything much wrong with me. What I dread is the story I’ve heard over and over: “I kept telling doctors x and y, but they kept telling me I was just fine and should relax more, and here I am with this horrible illness that should have been caught earlier.” Happens ALL the time. I just feel like something ain’t right, like badly not right.

Bad POTS day

Yesterday SUCKED. I’m going to describe the suckitude in case anyone wonders what POTS is like. I knew it WOULD suck because I woke up yesterday feeling like I’d been flattened by a steamroller.

First, my vital signs. My BP apparently was relatively OK all day. I didn’t check it much because I was super busy, but I did a couple times and it was all right, even had some pulse pressure. My Watch reports that my resting HR was 67 but the range was 57-179, avg 95. To put this into perspective, on most days my HR runs 75-85 when I sit down awhile during the day (doesn’t quite reach the resting rate), and when I stand up and walk a little ways, it goes up to 120. That isn’t normal, and it is not bad POTS, and it does make me feel pretty tired by the end of the day. But by no means is it catastrophic. If I do any real activity (sweeping the floor, folding laundry), it regularly gets to 130 or 140, and at that point I feel pretty bad. Yesterday if I so much as TWITCHED it went to 140 without passing Go. Walking slowly? 150.

The symptoms that silliness got me included my vision going speckly and my feeling lightheaded every time I had to walk anywhere: that means I spent the whole tiresome day terrified I was about to fall over. I felt bad enough I was afraid of actually fainting, which I haven’t done for a long time. Several times when I was just sitting and talking, my Warning Feeling stole over me…IDK what it is, but I know what it feels like. I get hot all over, my stomach clenches like when I’m about to barf, my brain ceases to function, and my head and all my muscles feel heavy and really weak. Time slows down and my hearing gets muffly. THIS SHIT IS DISTRACTING. And the fatigue. With those heart rates my body seems to think I’m logging long hours running down the road, and I feel as if I have been doing exactly that. It becomes imperative that I go home and crash. Which I did, when I noted the HR of 179. That? Is a good day to make it a shorter day.

I am grateful that as POTS goes, I seem to have a pretty mild form of it. I am usually able to function normally or at least it looks that way from the outside. I am always grateful that my BP does not seem to drop. Hang in there, BP! I’m pretty sure if it started to drop as my HR increased, I WOULD faint all the time.

Gratitude notwithstanding, days like yesterday befall me seemingly randomly, which sucks. I can’t really plan a busy day which is not the current day, because I have no idea whether I’ll be able to do it. I haven’t been literally unable to get out of bed for a couple of months, but kicking yourself through a day even though you feel like death feels horrible even if you are able to do it. I have some assurance through pattern tracking that once I have a day that bad, it is necessary for me to lie pretty much in bed for a day to recover or those days will just continue. I have this weekend off, so I will be doing that. PARTY TIME. Not.

So yes! This sucks! I’m glad that whoever is stabbing my POTS voodoo doll doesn’t do it every day all the time, but I never know how I’m going to feel when I get up in the morning. Imagine if you had a flu you couldn’t EVER shake. Some days you felt all right but others, the flu symptoms randomly got bad again. Everyone knows what it’s like trying to be up and around with the flu. POTS is that bad. Some bad days are inexplicably followed by just-fine days, but I can tell already that today I’d best plan as low-activity a day as I possibly can.

Florinef flu: FAIL

The same thing happened when I tried Florinef again, even at a tiny dose. Felt great for a few days, felt OK for a day but didn’t pee hardly at all, and then felt horrible on day 5. I gained 4 lb overnight (expected, because of the no-peeing thing the day before) and felt like I had the flu and itched. My joints ached and I had body aches like with the flu, I felt exhausted, and I itched all over, including having a scratch in my throat that kept making me cough like crazy. I took some Vistaril and felt a little better. I don’t think it’s possible to be allergic to a steroid, nor to become allergic to one after 5 days exactly, but there you go. It seems safe to say this is not the drug for me.

Can I POSSIBLY take ANY drug and have a normal reaction to it…either I react extremely to a tiny dose, or I need a horse-sized dose for said drug to affect me at all. I’m not right, pharmacologically.

Today I am having a bad day so far and I just got up; I had to pry myself out of bed and am so tired I am having my “too tired to function” thought processes. Those go like this: I could call in sick. I could call in dead. I could go back to bed for 28 minutes before I absolutely have to be up. I could skip my shower and sleep another 15 minutes. I could rearrange my schedule to start work later. I could just go back to bed and put my phone on Do Not Disturb because who cares if I get fired, I’m never going to be able to work anyway. Yet here I sit, not going back to bed.

The dizziness and falling parts of POTS suck for sure, but the fatigue is what really gets me. It’s what motivated me to find out what is WRONG with me. I wish I could explain this fatigue, because before I experienced it I thought “fatigue” just meant really tired. It is WAY worse than that. It’s both mental and physical; it’s having your brain refuse to handle simple thought processes and suspecting you really may be unable to get up. And when you do you almost wish you hadn’t because you feel. So. Exhausted. I can’t concentrate on anything when I’m feeling this way, and I hate the feeling. One time I took Phenergan and couldn’t really wake up for 32 hours, and it’s similar to that feeling, just like fighting off being drugged.

I’ve learned that when I feel this tired I need to rest. If I don’t it will get worse. I run the risk of ending up in bed unable to move even if I’m able to motivate myself to try it. Problem is, I’m trying to lead a normal life so I have a 50+-hour a week job for which if I miss a day there’s no one else to do my job, so I have to double up when I get back. It’s not good at all to miss a day. So just as I’m doing today, I push myself. maybe I’ll be all right tomorrow and maybe I won’t.

Sometimes I get away with ignoring my symptoms and proceeding anyway: usually I don’t fall when I feel like I might. Usually I’m able to get through my day when I feel tired like I do right now. When I do end up on the floor or in bed I castigate myself. “You KNEW you were having a bad day and should have paid attention!” Well, that’s true, but if I coddled every single symptom I would never do anything.

Very frustrating.

POTS, MTHFR, and poisonous vitamins

Someone posted on a POTS board about also having an MTHFR mutation. Immediately other people chimed in. That caught my attention because I’m heterozygous for the MTHFR 677 gene. Because 6 months ago I’d never heard of either POTS or MTHFR and now I’ve randomly heard of a bunch of people who have them both, that makes me wonder. What are the chances?

MTHFR is not a disaster like POTS, at least for me. I learned about it when I went to a naturopath for depression, thinking that depression alone was what was making me unable to get out of bed. He looked at my existing lab work and listened to my story, and about 10 seconds later he said he wanted to test for MTHFR mutations. He sent me away to read about it. What little research there is either says MTHFR excitement is a bunch of nothing OR that it can cause everything from dandruff to heart attacks, so I was skeptical, but I had the tests done. The proof is in the pudding.

As strange as it sounds, my vitamins had been poisoning me. MTHFR regulates methylation in the body, and you need that for all kinds of stuff. I have a reduced ability to reduce synthetic vitamins into the form the body can use, and some vitamins affect things you really don’t want to go wrong, like mood and cardiovascular disease. Eating folic acid, instead of folate, just blocks my folate receptors to the real stuff, and folate needs B12 to work its magic, so also taking non-methylated B12 makes things worse. I get lost in the biochemistry but essentially with this mutation you end up with high homocysteine (which is bad), I had crazy high cholesterol (also bad), and somewhere down the methylation line it affects serotonin and dopamine (hello mood troubles). I’d been choking down regular multivitamins for years and hated them because they made me feel sick half the morning. Who gets sick from frigging vitamins?

Easy fix, though: just take already-methylated B12 and folate, eat your leafy greens, and avoid synthetic folic acid, which sadly is in EVERYTHING because of the neural tube furor. In just a few weeks I was off my psych meds and feeling fine, and I haven’t had any issues. It was like magic. Decades of psychiatry could have been avoided with the proper B vitamins. It’s easy to test, too. If I take one of my methylated vitamin caps every morning, I feel pretty good. Push it up to 2 and I’m a nervous wreck. Overmethylation is a Thing. Like I said I get really bogged down in the biochemistry. You’d think I’d be shouting from the rooftops that I finally found a cure for my mood problems, but that discovery was immediately overshadowed by POTS. And I’m not due yet for a lipid/homocysteine check, so we’ll see whether those numbers get any better.

One characteristic of depressed people with MTHFR is that antidepressants don’t work. Mine usually worked for a short time, really short, and then it was like I wasn’t even taking them. So they started adding stuff to them, notably Abilify, which perked me up more than the others and for a longer time. Abilify caused a mental struggle. I did not like the side effects, mostly weight gain and the good chance of ending up diabetic (you know I dread diabetes), so I was on and off, with varying results.

Now here I sit about to go over the diabetes ledge with no wiggle room, if I haven’t already gone over, and I’m pissed about what medications can do to you. No, I don’t KNOW that Abilify did this to me, but that combined with having had VITAMINS make me sick gives me a pretty decent fear of putting ANY pills down my throat. POTS is making me confront that fear with Florinef, and I’m not a fan.

What if I’m poisoning myself for no reason? What if my POTS symptoms could be lessened in some other way that we don’t know about yet? I’d be diabetic and steroid dependent for no reason. This merry-go-round rarely stops. I decide to start and stop Florinef all day long in my head.

I’ve always been challenged, shall we say, at letting doctors manage my meds. I tend to tinker with them on my own, with varying results. The main result is that often I don’t outlast the side effects to see if the drug in question actually helps me. My current doctor has seen me on the floor feeling like death and understandably is confused at my reluctance to take a drug that seems to prevent that, but she doesn’t understand the depth of my phobia about being diabetic, either. It really is a panicky choice for me: fall all the time or be diabetic? To make things worse, MTHFR is reported to make metformin a poor choice, and normally it would be first line to control my blood sugar.

I have doctor issues. I work with doctors, so I’m really clear about the fact that they often do not know what they’re doing. And as a patient I’ve been blown off and misdiagnosed for decades, so that doesn’t help. Now I have a new doctor who does seem to know what she’s doing and who actually listens to me, so those things should mean I just do what she recommends, right? But what about? But what about? But what about?

And now we are back at my seeming need to control every single thing my body does, which is illusory and will fail. My autonomic nervous system is a mess so by definition I have no control over what it does.

As for my Florinef trial, once again it’s markedly and nearly instantly improved my POTS symptoms. Yesterday I went to a class that necessitated being up and down from the floor and didn’t feel too bad, and I successfully went to the grocery store, which normally I dread because it involves too much walking and stopping. For some reason it’s the stopping that seems to get me. I did get a high HR notification when I was just cooking dinner, and I could feel it racing, but it did not come with the brain fog and muscle weakness that you would expect. My pulse pressure was 40 at bedtime, so that is working. Could be such a thing as the Florinef doesn’t bring my heart rate down but does some other thing to keep the Really Bad Symptoms away. Unfortunately I clocked my blood sugar at 215 so I freaked out.

So as usual…I can’t control any of this except what I do to try to combat it: take the meds my (respected) doctor suggests, track the stuff I need to track, get a lot of salt, drink my 80 oz of water, wear my compression socks, and keep exercising. I’m up to 17 min on my recumbent bike and it’s not making me nearly as dizzy as it did when I started.

Health anxiety/obsession

I’m tired of myself. I constantly think about, worry about, and talk about my symptoms and concerns…which is largely why I started this blog, actually. I don’t want to be totally tiresome to the people who still listen to me. 

I need a happy medium. One where I think about my body just enough to keep it propped up, fed, exercised, and appropriately hydrated and rested, but where I am not thinking about, or constantly needing to think about, how I’m feeling and what it MEANS. I spend too much time consulting all the things my phone and watch track and worrying about my blood pressure/blood sugar. I do need to keep track of all that stuff, but at some point, which I believe I’ve passed, it’s not helpful. 

I *know* my heart rate goes up when I get up and move around. I know my pulse pressure is often really narrow. I know that probably these things contribute to the symptoms I have, but whether they do or not at any given time does not really change anything. I seem to believe, deep down, that with enough careful obsessive self-observation I will finally figure out exactly what is going on to cause the symptom in question. That belief is probably false and leads to a LOT of wasted time. 

But I can’t just ignore all of it and don’t worry, be happy, because if I fail to accurately monitor how I’m feeling, I will end up horizontal either immediately or eventually for some span of time, feeling like hell. I have legitimate concerns that cause me to ensure I’m not about to kill off my kidneys with high blood sugar or hypertension or collapse from low potassium, and it’s indisputable that if I fail to rest when I need to the consequences are dire. When I ignore how I’m feeling and push through, it goes badly. So I would like to develop a Goldilocks version of self-monitoring. Not too much, not too little, but just right. 

It’s as if, after spending months if not years lying around feeling totally at the mercy of unknown forces, now that I have a diagnosis that explains what happens to me, I now feel overly dedicated to figuring out how to CONTROL IT. Well, that probably isn’t possible. Railing against fate has been replaced with trying to control EVERYTHING. Not helpful. 

If I have a good day, I wring my brain out trying to figure out what magical thing I did or did not to cause that, so I can do it again, and the converse applies to bad days. Best I’ve figured out so far is that mostly shit just happens some days, and I may never know why. 

Also on my wish list: figuring out how to avoid feeling dimly frightened most of the time. I’ve had two bad, bad falls in the last year, one of which resulted in a broken hand. Those experiences seem to have left me constantly anxious and hypervigilant almost all the time. I detest, for example, just having to cross a concrete parking lot. Because that would be a hard surface to fall on. I get all tense and experience a dozen falls a day in my head, most of which never materialize. Again: lots of wasted time and energy. Do I need to exercise caution about falling? Absolutely. Do I need to let it take over my life? No. 

I seem to have accepted having a chronic health problem that needs daily TLC. Now I need to accept that after I’ve done what I can to provide that TLC, I need to let go and live my life as best I can.