Another day, another diagnosis

Well, I figured out what I have...epistolophobia!

Epistolophobia is an irrational or abnormal fear of writing or receiving letters or messages. 

Fun times! But this totally explains my panic attacks when I have to mail something.  It makes me nuts! This made me feel better:

Key points about epistolophobia:

Meaning: "Epistolo" comes from the Greek word "epistole" meaning "letter." 

Symptoms: People with epistolophobia might experience anxiety, panic attacks, or extreme discomfort when they need to write or send a letter. 

Related anxieties: This fear can sometimes be associated with anxieties around making mistakes in writing or the potential negative response from the recipient. 

So,  I can name it so I can treat it and handle it.  Just another day in my life....

second day is better

Second day off work.  Woke early again as usual. 

Kept caffeine to one cup.  Anxiety is better. 

Probably helped i had 10mg of pumpkin bakes last night :)

Today is better.  After breakfast and coffee and meds I'm still at 50% energy but I'm trying to pace myself. It helps that I don't have to go anywhere today and my doctor visit is virtual ☺️ 

Oh and I doubled my antidepressant today so that's gotta help :)

Of course

Of course I'm depressed..I can't run or dance or walk without pain. 

I forget how abnormal it is to have the constant discomfort or pain or nausea I'm in until those few days I take real pain meds... and the pain is totally gone. It's amazing. 

I just want to do something I don't HAVE to do and really enjoy it. 

Every day is a battle of willpower over my fatigue and pain and depression and ennui.

First day off with this week.. it's always rough. 

Anxiety is not being scared ...it's being the victim of a damn brain monster

 July 25, 2024

Anxiety, real anxiety, is not what most "regular" people think that it is.

Everyday people get anxiety about "things" - things that have gone wrong, things that frighten them, things they are afraid of doing. 

Having Generalized Anxiety Disorder - or GAD - that I have, like my grandmother and my son, is not a reaction to the outside world or things that worry us. GAD is a monster that takes over your brain and body and sanity in a way that cannot be described to someone that does not have it.

Today I had a full blown attack today. Now, to be honest, it's been stressful at my home recently. The four of us that "regularly" live here, my husband and our 2 sons,  have been joined in the last couple of years by my oldest daughter along with her 2 children (whom we love and adore) on her custody days. That has been...tight. We have the physical space in this huge house, but not for a full family like theirs and they've been cooped up in our full basement - right next to my hubby's home office where he works 4 days a week. Not ideal to begin with for anyone.

Add to that the fact that for the last month, we've hosted our oldest son's dear and beloved boyfriend, whom we also adore. With no other place to put him up, he's hunkered down in my office - where I work 3 days a week. So - we've been squished, to put it mildly. Some days, all 8 of us are here and it's loving, but too tight.

Not surprisingly, some days are worse than others and that day was today. It had been slowly building, and I'd been using all the crutches I could. Reading my favorite books to keep my brain out of the current situation, taking alone time when I can, cleaning when the crew is out of the house, using my favorite medical plant, attempting meditation but it is absolutely impossible in ways it never was before...and then lately, having to bring out the old big guns - my Xanax.  And it's barely been keeping me sane. 

But it struck me today that even now, I forget how it physically attacks me. Today, I couldn't breathe. My chest muscles were tight as a drum, no matter how I tried to relax. I could literally FEEL my heart pounding louder and harder in my chest as the day wore on. I checked my pulse, because I MUST have a racing heartbeat and tight chest from something, but nope. Nice and steady 70bpm while sitting, which is fine for an old white woman.

I couldn't breathe. I couldn't relax. I couldn't inhale fully. I felt like a band around my ribcage that was keeping me prisoner. Then I realized this was all the anxiety. Yes, the world is shit and yes, my life is a little crazy, but I am NOT having a heart attack or asthma attack or anything physical. My brain and body had decided to handle my stress by making me think I was dying.

I'm not. I took a full dose of Xanax.  Twenty minutes later, my chest relaxed. I was able to take a semi-full breath. It's still not back to normal, but I can live with this. The pounding of my heart stopped so again, like a normal person, I can't feel it now. I can form sentences. I can think clearly. Clearly enough that I am just ANGRY that this is my burden.

Now don't think I don't KNOW how lucky I am. I DO. Every day my body mechanics stick up their ugly heads to let them know that I am NOT in charge of how I feel. My UCTD and so many other stupid physical ailments with me daily keep me from enjoying the active life I thought I would have at 62. My retirement will look very different than I envisioned all these years.

No jogging in the park.

No dancing in fun competitions with my husband.

No pickleball with my friends.

No hiking in the mountains on vacation.

Not even singing weekly or playing my flute...the lung power needed is too draining for even that.

And many days, my back hurts or I'm too exhausted to even pickup my brush and paint.

BUT I KNOW I'M LUCKY.

Those are physical things and my brain is unaffected. I read and watch TV and listen to music and people I love and try to survive.

But when my own BRAIN attacks me and makes my life unlivable...I just makes me RAGE against it!

I can't imagine what my own brother went through that made it so unlivable that he just couldn't live.

I've always understood why he felt he had to make that choice. Always.

I've missed him SO much but understood.

So, yes, in that respect, I know I'm lucky, too, because at least I get a break from my brain shit and can be "normal" again on other days. The days he didn't have.

But, damn, it still sucks.

2024 Bermuda Cruise Log Day 1

June 7, 2024

Finally! More than a week since we got home, but we had unpacked everything and I had download/uploaded/scanned all my photos in the first 4 days we were home, then had to go INTO the hospital for work for my Monday-Wednesday shift, died yesterday and here we are today...SO...

Day One: Saturday, May 25th, 2024

Talk about stress! We hadn't cruised in FIVE YEARS and even though I still had all the cruise and travel documents and extras stowed away, getting them ready and packed REALLY stressed me out. However, once I realized we had an 11:00 embarkation time but the ship didn't really leave until 4pm, I calmed right down and got some sleep the night before.

So different this time-our boys drove with us up to the port, dropped us off and drove the van home. Live in chaffeurs! I could get used to this! Check in was painless and easy and before we knew it, we were walking around "our" ship, getting lunch at Windjammers and checking out our cabin. 

Talk about tiny! We got such a great deal but we opted for the tiniest inside cabin we could get. And it actually was fine until the last day or so, then it started to feel cramped. I was so happy that we started and completed the entire cruise without snarkiness or arguments! I guess the 23rd anniversary is the good one :)

It was also nice that this ship, the Vision of the Seas, was almost a carbon copy of the last ship we went on to Canada, the Grandeur of the Seas. Saved us a lot of walking around to find everything, since we knew where almost everything was. Except no Coke machines :( Oh well, I survived on bar sodas! lol

The weather was perfect and the Sailaway Party was a blast with the dancing and drinks :) The only somber part was sailing by the remains of the Key Bridge that collapsed last month. We were the first ship allowed back out after the collapse, since they had to clear wreckage and retrieve the victims, and the ship slowed and had a moment of silence when we passed, which was very welcome and respected by everyone.

Dinner at the Main Dining Room was...okay. Starting with the first meal and consistently through the entire cruise, the food was definitely mediocre. Not much taste or seasonings at all, except for the global food, like the Indian dishes, which were fine for me. But even the chocolate donuts didn't taste like chocolate! The cakes and pies were barely sweet. It was crazy, but even George agreed with me. I made up for it with lots of Coke :)

And that was the first day. We ate dinner and I think we crashed in bed early because I had no memory of that evening, but the bed was SOOOOO comfortable! If there had been enough room on my side for a bedside table, that would have been amazing, but no. Had to crawl in every night. But glad that I still can.

See you tomorrow for Day 2!

UPDATE: Notice there is not Day 2 or after...DANG...but really, are you that surprised? 

Depression- the "gift" that keeps on giving

 Saturday February 10 2024

I woke up today the way I've woken up countless mornings - with a lump in my stomach which drags it down to my gut and then the development of a deep and sorrowful wound in my insides.

Depression from the moment I become conscious.

This has been much more intense the last few years, probably because all the life experiences that used to keep me running around like a crazy person have subsided: college, marriage, moving, childbirth, full time working mom, single mom, stay at home with 2 baby boys mom, homeschooling mom.....etc.

My life is quieter and the horrible sorrow in my soul becomes more and more evident.

My body is not my own

April 10, 2024

I have only realized recently that I have been asking more of my body than it could do for my entire life.

When I was in middle school, I could only run the 50 yard dash well. For any distance further than that, I would get a horrible stitch in my side and that was the end of that.

When I was 13 and taking ballet classes, which I ADORED, I would come home after my 1 hr classes and lay on the sofa, totally drained for the remainder of the day. Needless to say, I didn't take them more than once a week and although it crushed me at the time, I realized that physically I wasn't able. At the time, I thought it was a mental failing and blamed myself for not going further, not doing better.

After college, taking Jazzercise with Mom, I would do great for the 40 minute class but flush wildly red and look like I was going to pass out afterwards. I thought it was just because I was out of shape, but I wasn't overweight (at times I was underweight), and no amount of physical activity would get me IN shape.

My body cannot do what the average body can do and it never did. At 62, I am still asking my body to do that of an average woman my age - and I cannot. Not even a little. 

But I have never listened and push myself every day to do more than it really feels comfortable. I'll never build the stamina or build muscles now, and now because I don't try, I'm lazy or even because I have fibro and a bum spine or any of my other 47 ailments - it's because I  never could.

For most of my life, my body was just a vehicle to perform what my mind could imagine. Dancing, running, yoga, swimming, anything was possible until I got exhausted or it hurt too much.

Now, my life revolves so  much around what my body can tolerate. Sleep until my hips ache or my headache starts (and it's never until I'm refreshed). Drink until I get a headache (which is almost immediately). Walk until my back feels like Atlas supporting the world or my feet are on fire. The list never ends. It seems crazy and backwards and I feel a prisoner of my body.

But it has never been able to keep up with my hopes and dreams.

Tough to fix

"When you constantly have to filter yourself, or keep your beliefs away from your spouse, it shows a lack of respect in your opinion. And that's tough to fix"

https://www.oprahdaily.com/life/a26040141/should-i-get-a-divorce/

SOTU turns into STFU

Asked my husband to watch the SOTU with me so we could be on the same page. 

He disagreed with everything I said that backed up Bidens speech. Disrespected every point I made.  

Ended with him saying "Fuck you", "you ungrateful bitch" and "I never should have married you".

So that's where we are now. 

Told him we need to figure out how to divide the retirement funds and I'm laying here trying to figure out how to divorce. Again. 

Oh well,  I tried.  I've been biting my tongue since 2016. Spent so much time walking on eggshells.  I'm so done. 

But looks like I need to get my shit together because I'll be working forever now. 

Free to be me

I didn't mean to,  but I wore myself out.

Last week,  I worked 30 hours instead of 20. Consequently had a two day weekend instead of four days off.  

Big mistake. 

Had extreme exhaustion so much on Monday I almost couldn't work this week. By Tuesday night, I realized I need solid sleep and a single Advil PM did the trick so I could finish my work week. 

Today is my first day off- Thursday. I slept hard until 12:30 WITHOUT Advil PM and I was so grateful.  Now comes the hard part. Relaxing. 

Probably not a great day to read that the Supreme Court justices were asshats again and didn't let Colorado kick an insurrectionist off their ballot. But that's life in these insane times.  And it's hard to be relaxed in insane times!

But I'm trying.  Really.  

TomAYto/TomAHta

January 18, 2024

Every day still trying to deal with debilitating exhaustion. 

I have modified my life to minimal activity and still can't do anything else on the days that I work at my desk for 7 hours. After that, it's bed or couch until bedtime.

Now I'm wondering if it's fibromyalgia or chronic fatigue.

My rheumatologist seems to think the answer is keeping my pain under control and those are the only meds I really take daily, except to sleep.

Some rheumys think the 2 are the same. Mine seems to be one of those.

And there's nothing that can be done about the fatigue according to all the medical sites, except for antidepressents like Lyrica and Cymbalta that did nothing or made me hallucinate.

So this is just my life. 

Damn.

I'm home

 Saturday, Jan 6, 2024

Three years past the insurrection and while my mind and social media feed is full of horribleness, I've also had some weird feelings and thoughts recently. Good weird, though.

Immediately before and after the new year, I had the weird feeling that "everything is okay". I am pretty sure it wasn't the edibles kicking in early (you never know), but it was a lovely relaxing of my chest from the constant constricting feeling of anxiety in my ribs and a calm I haven't felt in years. I am hoping this is an omen of good things to come in 2024 and the beginning of the end of Sweet Potato Hitler.

The second weird feeling I had was the thought - out of blue while I was wrestling with anxiety being around George - of "this is my house".

Now, this is odd. I have lived her for 22 years and my name is on the house. It is legally my house and my money did help pay for part of it. I helped pick out all the colors and appliances in it, I clean it as best I can and I am grateful whenever I see it after we get home from a trip out of town.

But this was different. I had the thought that I needed to realize that this is MY home. MY house. Not just one I helped keep up, but it is MINE. Now, of course, not all mine, but it's almost like I had never allowed myself to feel that way about a house because we moved so much as a child (8 times before I left for college). Maybe I had put up a wall to not really "settle in", plus George has made it clear that we can't afford to retire here and we'll have to move one day. That just guts me and I think I went off on him yesterday because he gets so weird when I say I want to live here til I die. 

The other place it is coming from is that I have always felt that I am here "at the pleasure of his Majesty" as it were - because of George. And that because he never really wanted to marry me that I am "lucky" to live in this house because of HIM. For years, because of my guilt about getting him to marry ME, I felt like I had to make HIM happy. I acquiesced to alot of decorating issues. If he really wanted something, I demurred. I mean, I'd already asked so much, who was I to insist we had a beige patio set if he REALLY wanted a black one? I'd already gotten more than I deserved. It was definitely a "if Daddy ain't happy, ain't nobody happy" household.

So that's alot of baggage I've carried for 22 years. But when I think of it as MY house now, I feel so much better. I am worthy of it. It is MINE too. I own it as much as anyone. It is mine to feel at peace in. It is mine to enjoy. I am ready to stop looking over my shoulder to see if I am doing things correctly or if I am accidently ignoring him if he needs something. At this point, he can barely hear me when I ask him something the first time, so I need to speak up all the time and I realize he isn't that interested in what I am doing when I am not with him.

For years, I had flashbacks of times when I had accidentally screwed up something, like not putting his frequent flier number on the vacation reservations or accidently embarrassed him by not asking before posting a picture of him he didn't like. Both ended up with me curled in a ball on the floor sobbing while he raged at me and called me every epithet he could think of. When that happens a few times, you start to walk on eggshells and fear anything you forget could lead to that.

When I got to the point where I didn't care what he did, it was sad and hurt, but it helped. If he unloads on me again, I will unload back and unload on him. I'm done feeling inferior or guilty or helpless. I have to make sure I balance that against times I may REALLY be wrong or hurt his feelings when I absolutely shouldn't, but I think I have a long way before I am unfair about it.

As a matter of fact, yesterday we had another verbal tussle in the car that resulted in me telling him that when he gets extremely anxious about finances and retirement, that it is horrible for me. (And more times than not, I go off to take a Xanax or edible until my heart stops racing.) That I am afraid our retirement will be a constant state of him bemoaning our finances - and that's even when we are better off than anyone we know. And I am NOT going to live like that. He again insisted that he WASN'T acting like that to me and I just didn't take it. I merely said "knowing how you react when we talk about it and I KNOW you're going to blow up, do you think I would accuse you of something like that if it wasn't REAL?!?!" And it was a long, quiet ride home after that.

At this point, every woman who has a "sensitive" man knows what comes next. I wait a reasonable amount of time and then I apologize. Because that's what we have to do to reestablish the status quo. Except I didn't. I'm done. This is the new status quo. If you do something that scares me or makes me uncomfortable and I tell you, I will NOT be gaslit, whether it's intentional or not. YOU did something that was threatening to me and I am going to tell you it's not okay. You figure out what to do.

So in this light, feeling like it is MY house has an important meaning. This is MY house as well as YOURS and I'm going to feel comfortable in it. I'm not going to feel guilty about leaving you alone to do my own things or lay down or not watch another game with you. It's okay for me to spend time alone in my office doing things I want to do. Maybe one day he'll miss spending time with me and try to find me, but that's not the point. The point is that I've always wanted my house to be a place where everyone could feel safe and now I feel it is safe for me. Because I've made it that way in my heart. This is my house and my safe place. I have nested here and hope to be here forever.

I really hope fate works it out that way.

PS I just remembered also that when we first moved in and I had transferred the phone service from my house to this one (because one of us had to) and left my name on it as the primary owner - George hit the ceiling. He was the husband and HIS name should be on all the housing docs and bills. I called and changed all the utilities to his name either primary or only, if only one was allowed. I learned early that this was HIS house and I was always secondary. I guess that really did live in me all these years.