Alex’s semester is over! While we wait for his grades to arrive, we are planning our time. The a babies are used to being home alone with me, and Himself is used to being away and on his own all day. He’s spending this week home with us, then starting next week he’ll spend 3 days weekly at the library doing job hunting and prepping for his first actuarial exams.
Yesterday we sat down and planned the summer semester routine. Having a routine planned, even if we strain against it or are challenged by it, lets us and the children know what is expected of us at any given time.
We don’t tightly schedule the routine. Daily, we set up who wakes up at what time, and what needs to be done for The Morning Routine. After that we set when is lunch time, when is dinner, and when the kids head to bed. Weekly, we settled what days and times Alex with be studying and what the general plan is when he’s home. There are real challenges to his doing school full time, so we are trying to take maximum advantage of the positives in the situation. He will be taking the girls for outings once a week, giving me a chance to have some quiet, personal time to do whatever without their sweet fingers all up in my productivity.
How do you deal with the time one your hands?
I am so grateful that things came together for this trip. My sister-in-law let us use her timeshare condo without charging us the fee. We found a cheap hotel for the mid-trip overnight, so I didn’t even have to boondock camp between Denver and Corpus Christi. Once we were there, it was a beautiful rhythm of visiting the pool, the beach, the fishing dock, and relaxing with videos. And rather a lot of eating.
My kiddos fell in love with fishing, which will never not feel shocking. My suburban princesses found a friend on the dock who taught them to reel, let them stroke the teeny fish he caught, and then stood with them on the dock for hours when the fish weren’t biting. Mr. Rocky was an absolute saint. He helped us with gettingout dusty rental rod into functional condition, teased us over using neon pink artificial bait, and then afterward sent us a card in the mail thanking us for sharing the dock with him.
I’m grateful for the last day we went to the beach, when the water and sky were so blue I thought I was in Florida. The wind was light and pleasant. Rosebud got over her fear of the surf when it was calm and rippling instead of stormy and gray. Jujubee made a friend with a little local girl and built a pair of excellent sand castles.
I’m grateful that this was my month to have a mild round of PMDD symptoms. I got home with my sanity essentially intact, even though I was on the road for what is the most acute phase. I didn’t break with reality at all! My worst symptom was an increase in social phobia that had me fleeing the community pool when the neighbors got too chatty.
We are just back from vacation and things are particularly chaotic. I have an idea that I should have handled our return differently. I should have done more school while we were away. I should be resuming our routine with rigor. I should be cooking more and more often, and sharing it with our friends, who are ill.
I should be better.
I should eat better.
I should workout more.
I should engage with the kids more.
I should clean more
I should be more like other people.
I call this way of thinking “shoulding on myself,” because it creates all of this tension to live up to impossible standards. “Should” implies consequences of not doing it. “Should” implies orders that have come from outside of myself. It is a terrible habit. It breaks up the day into chunks of false urgency and harsh self-judgement.
Rosebud is having a procedure done under general anesthesia today. She’s having some dental work done and also her second endoscopy monitoring her EOE. This is her second endoscopy in 2 months.
She also has a condition called Mastocytosis, meaning her body makes too many mast cells. Those extra mast cells can result in anaphylactic reactions to very odd stimuli: for us this includes ibuprofen, temperature changes, and stress. Because of this, general anesthesia is extra risky. She’s on 3 extra meds to keep her from reacting today and I’m sitting in the hospital waiting room twitching. She didn’t have a reaction last time, but I have this sense of dread when I’m not able to personally monitor her.
Having a sick kiddo is worse than being sick myself. First, Rosebud is NOT a stoic patient. She’s 2, for heaven’s sake, and already greets the sight of a person in scrubs by screaming “No pokes!” More subtly, though, when Rosebud and Jujubee are doing poorly I have to ask myself what triggered them. Did I miss something and accidentally expose them to a known trigger? Are they developing a new trigger? Is this the dreaded idiopathic reaction? I can be philosophical about my health, but I have no calm at all about theirs.
Ok bitches. Things is about to get real. REAL, I say. I am the heaviest I have EVER been, thanks to casual snacking and a new medication
I am going to the beach in 2 weeks. I have swimwear that fits, but I’m not happy in it. I have a wedding to attend in 52 days and my corset busks don’t close. (This is like a fucking pricey dress that won’t button, for you non-corsetry peeps.)
My commitment: Slim Shakes or an equivalent meal-bar for breakfast and lunch. Sweets only on Thursdays and game days. Food journaling to keep me honest. One fast day weekly, probably Tuesdays. Yoga or cardio 4 times weekly. I MIGHT lose as much as 5 pounds before the beach trip, but that should get me into my corset by the wedding.
Want to see more of my fitness battle? Join me on MyFitnessPal. My name there is “FragileSound” and I would be utterly delighted to see you.
Nothing special to report today. The dog lives on, sweet girl. The weather is increasingly spring-like, though we could still get snow in Denver before the month ends.
My energy is strange today. My doc suggested that I shift one of my meds to AM dosage instead of PM and it does seem to make a difference. I’m not more awake, and inertia remains an hideously powerful force in my life, but there is a meditative quality to my lethargy that is quite pleasant. Instead of being worked up over what I should be doing, I’m able to simply rest. Once I do get my butt moving I’m pretty productive.
Take today. I got up at 0845 with the girlies, arranged breakfast then laid down on the couch to doze while they ate. I was up and down, alternating between taking care of the kids and dozing on the couch until 1130. Then I got dressed, wrote a blog post, started the laundry, made lunch, played a very small amount of a video game I haven’t indulged in in eons, and now that the girls have eaten I am back at writing. I feel strangely good. Small changes in routine, med management, and lifestyle can really make huge difference.
A week ago, admittedly during the worst part of my cycle, I was self injuring and crying uncontrollably. Now i’m contemplating a walk with the kids, grocery shopping, and speaking to the neighbors. My girls have made friends with the girls next door, which is totes adorbs, but I have not yet managed to get to know the parents. I’m not good at small talk and the idea of getting to know them is terrifying. Today, though, I’m able to contemplate it a little.
For those of us on a cocktail of meds and supplements, pill boxes can really help ensure that we actually manage to take everything everyday. I have a system of 7 boxes, each with 4 compartments. I use one box for two days worth of pills; morning and evening. It used to be that I would fight the fight to keep them filled myself. Now Alex fills them for me, bless him.
Pill Box Day, when I would lay out all of my prescriptions and be confronted with the reality of my various diagnoses. I would get sucked into a vortex of excessive introspection, thinking and recriminating myself for being a sick person. I knew that this happened, and so I would avoid Pill Box Day for as long as possible. My old system could hold as much as 60 days of meds, if I could coordinate my supplies that well.
Three to six weeks in between sessions still wasn’t enough, though. I would end up off of my meds for days or weeks, and we all know that is no help at all. How does your family support you taking your meds? Do you have a special way of getting through yours version of Pill Box Day?
I had a bad feeling this morning that I just couldn’t shake. I was supposed to go shopping with my mother-in-law and the kiddos, but when the time came for Alex to head off to class and for me to get to work, I was hit with a powerful dread. Bad things were going to happen Out There.
It is a little early in my cycle for the agoraphobic paranoia to be taking over, and we all know it. I talked edgy/weird self into the car for errand running, meant to culminate in a trip to Target: Land of Wonder. My kids live in old hand-me-downs, so the prospect of a Target run for new shoes (“Thank you Grandma!”) is tantamount to a trip to paradise.
The boring errands went well, but I got turned around, flustered, and harried on the way to buy vacation shoes and turned left into traffic. WE ARE ALL FINE. Clearly. But I was instantly triggered; shaking, flinching, crying, and generally making an enormous scene. It was slightly worse than a fender bender. Both cars were able to drive away from the scene.
Now, though, hours after the fact I’m still around the bend. My mother-in-law is calm and cheerful in her gratitude that we are all safe. I’m up in a metaphorical tree. I’ve taken my emergency anxiety med and a nap. I have had food and tea. I’m still shaky and prone to zone way way out. I want to lay down with a book or a TV show, but with MIL right here I’m trapped trying to appear productive. Type-ity type-ity type nothing to see here! I can hear my blood in my ears and my heart feels like a galleon jug shoved into my chest, but we are all fine here!
I can hear the crunching metal, over and over in my mind. I want to drown it out. Maybe David Attenborough will help. That’s a healthy choice. We have already done a kindergarten piano lesson, two games of Candyland, had a brawl about the ownership of a few coloring books, and had dinner. Two hours until Alex comes home. Then I can go to sleep, reboot, and try again tomorrow.
Tomorrow is its own problem. I’ll deal with it then.
Having an invisible, stigmatized disease sucks. The worst part, though, in my opinion, is the process of getting treated. Because FIRST you have to prove it. Uuuuuuuuuuuugh.
It is worth it, because eventually these physicians/therapists/social workers/etc can make the pain less.
But first it is stupid clinical worksheets (“On a scale of 0 – 5, how much do your symptoms interfere with your daily life?”) and gateway clinicians trying to figure out if you are displaying drug seeking behavior before letting you speak to a real psychiatrist. First, you have an hour or 90 minutes of being questioned. It may have taken you months to work up the nerve to say “I think I need help,” but you have to have an entire session of work done before anyone will do or say anything helpful. And if anything, going into an inpatient facility is harder!
All of these places and all of these people are worth it. And these hurdle exists to protect patients from bad diagnoses as much as to protect providers from fraudulent people but AAAAARGH. There has to be a better way.
It isn’t just for us adults, either. My 5 year old started have self destructive, self harming meltdowns and NO ONE would help us. I was on waiting lists to see providers that were YEARS long. Finally, after several months of searching, we went to see someone with an amazing reputation who ONLY took cash payment. Because he could see us within a month. Then we had two multi hour sessions, one with us and one with just Jujubee, before we could even start making a plan for her. We were in terror of her behavior for about year. Autism? Depression? Did I do this to her because I’m mentally ill?
Verdict: Anxiety. We have a game plan. We are changing a lot of the way we live to help soothe her and to teach her to soothe herself. But WHY did we have to suffer and beg for a year to get here?
Moving sucks. If our living environment impacts our mental health, and most experty experts agree that it does, then moving is signing up for a serious downgrade on mental security.
First, you go through the filthy job of packing and cleaning the old place, then you are left up to your eye teeth in boxes. Boxes of pre-curated clutter and junk with enough sentimental value that if you can see it you want to keep it.
We are up to it in boxes of clutter right now. We have unpacked enough that we are able to live quite comfortably, but there are stacks of untouched boxes in the corners and about a fifth of the main living space is crammed with them. We have been officially in the new place for 7 weeks. My mood is swinging all around, and I’m struggling to stay vertical all day. It isn’t pretty and we are all suffering for it.
I’m sorely tempted to throw away any/everything still in boxes, then I remember that it includes my photos flash drive and I start wonder what other important things I’m forgetting about, so I have to go through all of it. Sadly, for every awesome find like my flash drive I know there will be a dozen or more little objects that I neither want nor need that I will have to deal with. Broken pencils, sentimental knick knacks, things that I received as gifts that no longer make any sense but still carry a burden of obligation.
How will I cope? What do you recommend? Well, it is obvious as I write this that I need to get the unpacking and secondary purging f-f-f-finished. This is less obvious when the kids are demanding entertainment and the laundry needs doing, and homeschool, and dinner, and and and.
Maybe working on one box, not necessarily emptying it, should become part of my after-Rosebud’s-sleeping routine. In our old home I got up nightly to exercise and work in my journal. Maybe reinstituting that will help me feel less like I’m drowning in unfulfilled potential and suicidal resentment.