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.

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.

A shit mood

Just ranting today. I felt exhausted for a solid week, POTS was bad, and I pushed through it minus doing much to take care of myself: no healthy food, not enough rest, no sessions on my recumbent bicycle. My job is fairly insane right now. It causes me constant stress and long hours without time to sit down and eat lunch, etc. Everyone is cranky. So all week I’ve flogged myself through work and come home to collapse on the couch to mindlessly watch TV and eat junk food because I’m too tired to cook. My house is a mess, nothing is done on my to do list, and when that happens I feel overwhelmed as to where to start.

I’m feeling pretty blah. Meaning I ended up lying on the floor sobbing yesterday. Lying on the floor is common, but sobbing is not. I hate crying. I’m not sure why THIS trip to the floor was one over my limit, but for whatever reason I just felt DOOMED. I sat on a pity pot. Metaphorically. I’m tired of being tired, I’m tired of feeling sick whenever I eat and barfing all the time (that’s why I got up too fast this time), I’m tired (WORN THE FUCK OUT) from having to constantly think about whether I’m about to fall. I’m tired of actually falling; I’m tired of hurting myself. I’m tired of being unable to concentrate or read a book. I’m tired of getting even more tired and feeling my brain fog reach a level where I think “WTF am I even supposed to be doing right now?” I’m tired of not being able to do stuff I want to do because I can’t be upright that long, although I’m gloomy enough now that I don’t even feel like doing anything to begin with. The only reason I’m out of bed today is that I don’t feel like lying there either.

Often it helps me to ponder that I’m not that badly off. Lots of people have really serious terminal painful shit going on, and those people would be overjoyed to have the OPTION of doing the things I need to get done. Or to ponder that I have a life that some people can only dream of: I own a home, my car runs well, I have a job and no crazy debt, I can afford to purchase healthy food…that list is very long. LIVE AND APPRECIATE THE LIFE DREAMS ARE MADE OF.

That is not helping today. I seem to have regressed to roughly 3 years of age emotionally and am mentally having a tantrum and drumming my heels on the floor because I don’t feel good, don’t know why, and have no idea what I want to fix it. I don’t like it. My plan is to finish my coffee, brush my teeth, and just start getting some stuff done.

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.

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.