It’s hard getting appointments with my psychologist. And a few weeks ago I set up some recurring Tuesday appointments which now conflict with the day program. So we’ve been going week to week trying to set up last minute meetings.
Got a call Friday morning offering a timeslot in the afternoon and that worked out for me, so I took it. Unfortunately, the first topic of discussion (after “how are you doing?”) was her relaying that she was leaving the practice and moving on to a new position in another state. So the therapist that I’ve best connected with is going away. I handled the news as well as could be expected, and I really do wish her the best. She’ll likely be around through December, and I’ll continue to see her through then.
But in answer to my earlier question “how are you” I’m finding that a good answer to that question is “sensitive.” I took the news fairly well, but it’s really sinking in and bringing me down. I do know that I’ll find another therapist, and maybe even one who “gets me” as well as she does. But it’s disappointing and frustrating. And has me feeling my depression fairly intensely this weekend. But I’m getting a lot of sleep and taking care of myself as well as I can. And so is my family. We had a good shopping trip to Target and then hit my favorite restaurant for a yum yum bowl. I’m safe and it’s not putting me in the worst place ever, but I’m definitely down.
Before we tackle that question, let’s look at the issues at hand when trying to do a personal depression inventory:
Depression as identity – Am I a depressed person or am I a person with depression? I have lived with depression for decades. Sometimes it’s once or twice a year, other times it’s the whole package all year long. Regardless, it’s been a part of my life long enough that sometimes it’s hard to know where it starts and ends.
I have removed pretty much every stressor in my life. A leave of absence from work, no daily commute, nothing to raise my blood pressure.
One of the issues I’ve identified with my psychologist is that I hold onto my depression, and I have trouble visualizing myself without depression.
Right now, depression is my full time job. ECT three times a week, day program three days a week, psychiatrist appointments and psychologist appointments, as well as the face-it foundation group. It’s an awful lot of time spent talking about and treating my depression.
How do you measure depression?
How are you feeling? Sad? Down? Depressed? Is it the feeling of depression or is it something more easily measured? If we look at my current PHQ9 score, that’s a 20 – severe – Warrants active treatment with psychotherapy, medications, or combination. If you want to go by the HAMD, it’s 17 points – Moderate depression. If you compared those to two months ago, you’d likely see much higher numbers back then. So technically, I’m a certain amount of better. Does that track with what we’re hoping to see?
How do you measure progress?
When talking about treatments and potential outcomes, most meds (and ECT) consider effectiveness to be a 50% lessening of the symptoms. I’ve never gotten a straight answer on whether or not that’s cumulative – in other words are two effective treatments likely to equal 100% improvement? So I guess we’re looking at those scores above to see if they’re improved by 50% or more.
So, how are you?
But to answer the question, I really don’t know. I feel that I have more “bright” days than dark, and overall my mood has certainly stabilized — a byproduct of one of my meds, to be sure. But has the depression lessened? Yes? Somewhat? I still feel it in my chest, in my bones, and in my head. But even then, what will I feel when I get out into the “real world” again? And how far do we have to go down the rabbit hole to be sure we’ve done enough? If this were a tumor, we could inspect to see that it’s all gone. If there were blood tests to be done, we would know when things were back within the “normal” range. But since it’s an emotion, a mood, a feeling, a state of mind, it’s much harder to say.
In the perspective of suicidal ideation, that’s certainly reduced – but I still have days where I would prefer not to exist. I still go to sleep at night wondering if tonight I’ll pass in my sleep and finish this adventure. But I don’t spend my sleepless hours trying to come up with a plan, if that’s any consolation. So I guess I still have a ways to go.
Tuesday was a busy day. Up early to see my psychiatrist to review my meds. Waiting to see how the ECT progresses before we change anything else.
Grabbed some coffee at the hospital and an uber home. Had enough time to practice playing music before a neighbor gave me a ride to my day program. It’s so nice to have so many people who want to help.
Wednesday’s procedure was as expected. Some jaw pain, dealt with nicely via Tylenol. It’s a little unsettling to know why I have the jaw pain – they use a bite block like this:
but the truth of the matter is that it’s still a seizure. So the little bit of pain is just a reminder of the scale of the procedure.
My care team at the ECT clinic mentioned the blog and that they liked it, and my writing. Hoping to keep up those standards.
As for the day program, a little background: It’s three days a week, in the afternoons. After a round of check-ins for everyone, there is usually a lesson on mindfulness, CBT, ACT, or some other therapy. Occasionally there is some time for art or other creative activities. I find it really useful to have group, and the lessons are always helpful.
New nurse – or is it old nurse and new nurse was last week? Waiting room crowded, like standing room only by mid morning. But we were seated so there you have it. Same routine, lots of waiting, bad TV shows in the lobby.
No signs of the depression changing, but we’re going to go another week before we turn the power up. Had a headache and general “icky” feeling all day after treatment. Even with a midday nap. Slept poorly last night. Feeling like this paragraph is backwards.
Dizziness, headache, a little jaw soreness, and general anxiety made the day pass slowly. But got to practice music and play some video games.
Wife and I went to see our son this last weekend and it was a nice break, albeit tiring. Everything I do takes twice as much effort for some reason. But it was good to spend time with him and meet some of his friends at college. He’s doing really well and we’re proud.
Long day tomorrow so resting for the remainder of my evening. Daylight savings time is messing with my pacing for the bedtime marathon.
So that’s three treatments complete, one week down. Time for a personal inventory, I guess. I don’t feel that much differently. I am still a little hopeful, but have been feeling the depression all week as well.
The staff at my hospital are great. They take the time to explain everything, carry out they procedures with my comfort in mind, and laugh at my jokes. The laughing is the true test.
We’ve been managing the logistics fairly well, though still dialing in the timing of appointments. After going early and having to wait a long time, we adjusted to going later – but still ended up waiting a while. So back to early it is. Not driving is a bummer, but it’s also nice to be able to look around while riding to and from places, and to be able to critique whomever is driving. 🙂
Physically I’m not really in any pain. Sometimes a headache, but really the only painful part is getting the IV.
So overall I’d say things are going pretty well, with no obvious changes in mood. Wife might argue that I’m a bit brighter than usual. But still feeling the funk.
Today more random electrical connections left on my chest for me to rip off. Makes pulling a band-aid seem like nothing!
Update: I just remembered, the nurse said the mood ring went all rainbow colored last time! Multicolored and changing!
Apparently I published the draft of this post five hours ago. Oops.
Today after the procedure, my jaw ached for a little while. Doc says I keep having really good seizures, and I’m guessing this and the calves are a side effect.
My legs are a little loose for a few hours afterward. Not completely unsteady, but not so sure on my feet that I’d want to play basketball. Ok, yes, it’s actually more true that I would rather never play basketball, but it was the best thing I could think of.
I will never be able to spell seizure without spell-check
The above makes more sense now that I’ve googled what the procedure looks like. I found a British clinic doing it and even though there is muscle relaxant, the patient really was seizing, physically. In a controlled environment, and attended to properly, of course. It was fascinating, but if you don’t want to be able to picture me having a fit, don’t google it.
Also, I’ve got random IV holes on the left and right hands. That’s the worst part, getting stuck for the IV. But they’re pretty darn good at it and it’s as painless as possible. I can “smell” the saline when it starts flowing into my veins, which is really odd, but lets me know they’re almost done with the ouch part.
The lobby was showing “Kelly and Ryan” and “The View” on the TV, and to be honest that’s more anxiety causing than the thought of a medically induced seizure.
Wife and I are off to see the Son down south at college. May even get to meet the new girlfriend – no pressure! He’s going to get a body crushing hug, as the last time I saw him I wasn’t sure I’d ever see him again. That sucked.
It will be a good weekend away in the more tropical climes, sipping drinks on the beach – just what we need. Ok, so no drinks or beach — just cornfields. But lovely to see the boy again. We even sprung for the one motel in town, as opposed to staying in the large cities nearby for less money.
This is my Harvey temporary tattoo — looks pretty good for 29 cents! (plus shipping)
One of the things I’ve learned in the day program is the concept of GLAD. It’s the idea that you every once in awhile or at the end or beginning of a day go through the acronym GLAD and say:
one thing you’re grateful for
one thing you’ve learned
one thing you’ve achieved and
one thing that has delighted you.
the family and I have started doing this at dinner and it’s a great way to spark conversation about your day and to find out how everybody is doing. Of course it’s a great way to express your gratitude which is a very important part of working with depression and anxiety.
So today I am:
Grateful for a warm home on a chilly day.
I have learned a little bit more in my practicing music.
I have achieved getting up at a decent hour and being productive in the morning.
And I have delighted in some Captain crunch cereal.
Ok that last one might be a stretch but it was pretty good. so when you have a moment go to the acronym think about what you’re glad about and see if that helps.
This one is going to be much more rambling and disconnected. Up again in the dark, but now it’s just an appointment, it’s not a grand adventure. Aunt and Uncle are giving me a ride home, but wife took me and was my “minder” through the appointment. It’s a complicated thing, my schedule. So it’s wonderful to have such great support.
Actually more depressed today and late yesterday. It’s been a crazy week so this is probably a response to all that excitement. Combine that with nervousness and I’m a little grumpy. Haven’t even practiced playing music since the weekend. Did manage to knit some last night on the Hudson’s Bay themed scarf.
Yesterday Aunt and Uncle gave me a ride to my psychologist appointment downtown. They went walking while I got my head shrunk. Apparently they spent most of the time looking for a news stand or somewhere to get a newspaper. I guess they still print those.
Afterward we went out for brunch at a new diner – very funky and very cool. It’s owned by one of the people we meet at the school fundraiser Halloween party last weekend. He even recognized me in my old glasses. (New ones broke). Aunt&Uncle and I had a great conversation, talking about everything from trying to explain what mindfulness was, to Uncle’s dad teaching him yoga in the 50’s. And the usually family stuff, of course. It’s been really nice getting closer to them these past few weeks.
In the afternoon I had day program and one of the others attending was having a “last day” so we did the tradition of making art after check-in. They were musically inclined so I made this:
This makes me happy
I really like the day program, you get to meet so many different people who have the same or similar problems to yours. Unfortunately, that means they end up leaving and it can be sad. Turnover is a bitch.
Random notes from today’s prep:
When they take vitals you get to take a drink of a medicine that is supposed to prevent aspiration during the procedure. It tastes like raspberry sour patch candy.
Printed up some cards with the blog info on it to share.
Have my “social avoidance tools” fully deployed today. No eye contact, headphones.
56 days until Christmas.
I’ve been thinking of a semicolon tattoo if I make it to a certain date. New Years?
The doc said I had a really good siezure last time, and that helps them dial it in. Had additional meds to help with they nausea and calf aches. Calves are much improved today.
The procedure was the same experience today, but I’m understanding the layout better and less confused when I come out of it. Figured out where the recovery room was.
I shared my cards with them with three blog address on them. (Hi, care team!) They thought it was a cool idea.
One of the nurses was very excited when I brought up the mood ring. She did notice it and it changed color during the seizure, blue and green and purple. Not strobing, but still interesting!
Was wearing my suburbs shirt and they asked if I had ever seen them. Many times, I replied and they asked whether the singer was still in the cities. As they were putting me under I said “Chan Poling, I’ve met him, I’ve got stories, but now you’re going to miss them…” as they put me under. So I went out to the sounds of laughter, which must be good.
Wife reports that I came out much quieter today, less joking around. But I’ll attribute that to the increased depression.
Got home and straight to bed. Skipping group today, which is really disappointing but the sleep was worth it. Next week might be able to make the Wednesday session.
Still planning on going to see the Son this weekend, which will be tiring but a much needed boost. I miss that guy like a missing limb. And we may get to meet the new girlfriend!
And finally today I finished my Hudson’s Bay Blanket themed scarf!
Ignore the imperfections – it’s only my second knitting project!
At the suggestion of my wife, a Sharpie allowed me to bring Harvey along for the procedure. He slept through most of it.
For some reason I thought a Marines shirt was the appropriate choice. Maybe for confidence. We arrived in the still dark of the morning, and after some wandering around found the office. Checked in with the usual paperwork, depression inventory, had vitals taken. Blood pressure was crazy high, but I was nervous and couldn’t take my BP meds yet. Got a nifty wristband but they cut it off before I left, so no souvenir. I have, however, been finding various connecting electrodes and bits of adhesive jelly here and there. Like a personal scavenger hunt for the elements of the hospital bill.
While we waited, Wife and I scanned the wristband and figured out which numbers were my patient number, record number, etc. It can be fun hanging out with a medical records junkie. There were half a dozen other people and their minders waiting, but I was picked for first today.
After a review of my meds and a check-in to talk about my depression, I got to take a test to judge my confusion level. I nailed it, 30 out of 30. It was a pretty easy test, although I had to do math at one point and, well, math is math. I waited a very short bit and they took me to the procedure room.
No changing into hospital gown needed, just lay down on the bed and chatted with the doctor (whom I’d met a couple weeks ago) about what we were doing, side effects, etc. Another conversation with the anesthesiologist. One of the questions was “have you ever had a seizure” and I said “no, but give me a minute.” It took a moment for it to register and they all laughed. Wit as a defense.
IV was put in while I was talking to the doctors, which helped distract me from it and to be honest I don’t really remember it much. It was that easy and comfortable. My daughter had read that they will sometimes put a tourniquet on a foot so they can isolate the muscle relaxant and see the foot during the seizure. They did not do that, but I thought it was interesting.
I mentioned that I had a mood ring and was curious what it would do during the procedure. Unfortunately I forgot to ask afterward – I’ll ask next time. And finally, the anesthesiologist put a mask lightly over my mouth and nose, and after being told to breathe deep, my stomach dropped like on a rollercoaster and the world slid away from me.
The next thing I knew I was waking up and they were removing my wristband and a wheelchair was rolling up. My calves hurt like I had run a marathon yesterday. And I was a little bit nauseous. A little bit of a headache and groggy as hell. But it was over and I was moved out to a sub-lobby where they gave me a muffin, juice, and eventually coffee. Which was maybe a bad call on my part, since I needed to go home and sleep. The coffee was shockingly good. (See what I did there?)
Once I was cleared to go, Wife took me down to the lobby in the wheelchair…
Wheelchair ride out of a hospital!
.. where I got to line up with the other patients waiting for rides. By the time we were on the way home I was really starting to sort out how I felt. It felt like the weirdest hangover. You know how it feels like your skin is crawling? My head felt like that. On the inside. But it was not uncomfortable. Just odd. We had a few moments where I felt like the die in a magic 8-ball when we turned a corner, but that was actually kinda fun.
By the time we got home I was doing much better and even though I wasn’t very steady on my feet I got out of the car all on my own. And then I slammed my coat sleeve in the door. Oops.
I went straight to bed and was out fairly quickly. When I woke up an hour or so later I felt like a warm gummy bear and I just wanted to stay in bed and rest. So I did. Checked out my phone a bit but decided that I needed to watch a movie or something. I have been wanting to see The Rankin and bass Hobbit again so I watched part of that. I consider that actually to be a worse decision than watching One flew over the cuckoo’s nest last week. Just all that singing is so horrible.
My super wonderful and supportive wife made me an excellent peanut butter and jelly sandwich and some milk and I had lunch in bed. She joked that it was like how our daughter sometimes just takes her food to her room to eat.
The rest of the day has been fairly uneventful but I do still feel a little groggy. My calves still hurt, I’m still really tired, and I find myself randomly wandering from room to room looking for something to do or looking for something. I’m going to have to structure these weeks fairly well because I can’t spend all of my days being this bored. Although I did watch The Favourite and felt like I was much like Olivia Coleman’s character as the Queen Anne just wondering the palace aimlessly.
I don’t intend to all of my entries to be this long and this detailed I just wanted to cover the first day and what the process was like. I don’t know how much or how often I will update, but this is definitely a fun exercise and a great way to remember and sort out my days.
Didn’t sleep. Not a wink. Like being at work for eight hours. In the dark. With no work to do. Do you have any idea how boring that is?
There’s this thing called sleep hygiene. Go to bed at the right time, get up at the right time, if you’re not sleeping, get out of bed and do something calming, don’t use screens if you can’t sleep, stuff like that. Well it was a busy night for me. I even learned that I can knit in the dark. Handy. Oh yeah, forgot to mention I was fasting for the treatments from midnight on, so no late night frosted flakes, no warm milk, no sominex, not even a sip of water, per instructions. Tired and thirsty and hungry.
So here I am, about to get up and head off to the first of many sessions of ECT. Nervous? Sure. But the exhaustion is helping calm me down, I guess? I’m more curious about what it’ll be like and hopeful for the science to rescue me.
And I have at least five minutes of really supercharged sleep to look forward to! 🙂
