I showed up for my scheduled ECT this morning. And in the pre-screen I talked about how well I’m doing, back to baseline on everything. Somehow the conversation twisted and the PA asked if I even wanted a treatment today. Um, NO!
I waited an agonizing 5+ minutes while she talked with the treating psychiatrist. They agreed I was doing well enough not to have a treatment! I’m to call in a week for a phone screen to see if I’m still doing well or if I need a treatment. If I’m doing fine, they will discharge me and I can get the port out of my chest (used to access a vein easily since IV’s are hard to get on me).
Hooray! I celebrated my unexpected free day and good prognosis with a ginormous mocha from the coffee shop in the hospital lobby.
I also saw my regular psychiatrist today to ask about the fine tremors I have developed in my hands. But, I got to gloat about how well I was feeling. And I was shocked to be doing so well that he wanted to see me next In Three Months(!).
Even as I’m feeling well, and stable, and Good, I’m worried about the bottom falling out and plunging into suicidal depression for the millionth time. My doctor encouraged me not to worry about what might happen, and even to make a video or add to my mirror post-its that Yes, I was doing well. Something to help remember if (when?) things get bad, that I had been healthy and it would happen again.
Why do I expect suicidal depression to come again? Just because it has been a companion I could count on? And I got as good as one could get at dealing with it healthily?
How about I have no freaking clue how to be in a good space? I’m worried that the increased energy I feel is mania, and that the only way I have to express how good I’m feeling is to talk too much or to spend money. Both of those are things I do when I’m manic, yet I’m not manic.
I just don’t know how to be healthy! What are behaviors You have when You are healthy?
No, I’m not suicidal. At least I don’t think I am. I am scheduled for a 21st ECT tomorrow, but am authorized to call it off and schedule for Thursday instead if I don’t have any symptoms. Which means I’d be down to once a week – and I’d be allowed to drive again. So am I suicidal? Am I paranoid? Am I depressed?
The doctors think the irrational fear manifesting as paranoia is part of the cognitive side effects of ECT. So the presence of some paranoia is not cause for having a treatment tomorrow. I don’t think I’m depressed either; I have been highly motivated to do things and be social this weekend, and my mood is elevated. I don’t believe we’re in hypomania territory either.
Finally there is the ever-present suicidal ideation. They are just thoughts that pop into my head and are easily dismissed, even plans or the occasional desire for death. I’m not ruminating on death or desiring it as I think about it. The desire and intent to follow through just isn’t present. So, yes, I’m having suicidal thoughts – as is usual for me – but I’m not depressed, and the plan(s) are only theoretical, not action plans.
In fact I’m re-reading Night Falls Fast by Kay Redfield Jamison, about understanding suicide. This read through I’m not looking for ideas or plans or reassurance – or even a reason Not to kill myself. I don’t have a suicidal perspective. My mind is approaching the topic as a curiosity: why would someone think such thoughts or consider such actions? What psychopathology do I manifest when I’m thinking of suicide or taking actions toward it? And while I look with curiosity, thoughts of suicide do pop in and out and I wonder if I am thinking too seriously of suicide and need an ECT treatment tomorrow. My mind’s perspective is not suicidal though, even though I have energy and drive to follow through on plans. I don’t desire death. And, in fact, I wish to desire life. So sometimes I do desire life, and sometimes I wish I did in the midst of suicidal thoughts popping in and out.
But I don’t think I need a treatment tomorrow!
Not only am I feeling better – much less depressed – but I am also _looking_ better too. Doctors and nurses are noticing that I look like I’m feeling better. My appearance matches my reported mood. People at church are also noticing my increased mood in how I present myself and speak. In general people are saying I have a brighter affect and more positive aura.
It’s wonderful that I’m looking as good as I’m feeling. In the last week I’ve had to put a number, a percentage, to how I’m feeling. I think I’m about 90%! I still feel a little depressed, lethargic, tired, difficulty concentrating, not enjoying activities. Yet overall my mood is uplifted, nearly happy, and I’m finding some enjoyment and motivation.
I’m dumbfounded at how well ECT is working, and I’m wondering if I chickened out the three times I tried it at Linden Oaks and didn’t get beyond three treatments. I stopped after 8 treatments while at Good Sam because of side effects and memory problems. Now I’m not getting side effects or memory problems, thank goodness. I do have some aphasia, not being able to think of or come up with words for thoughts I get. I’m told it will go away after ECT treatments are over.
Today I had my 13th ECT treatment. My depression continues to improve! I’ve had 3 ECT’s each week of the last several weeks. My brain is rewiring itself with the seizures, and symptoms are going away. Appetite and sleep are good now when they weren’t a couple weeks ago. Concentration is getting better, and psychomotor agitation and suicidal thoughts have dissipated. I still feel depressed or down every day, and have low energy. I think I’m about 90% better. And the gains are solid through non-ECT days too. Starting next week I’ll be having only 2 treatments each week and decreasing from there too.
Cognitively, the only side effect I’m having from ECT is some aphasia and some slowness putting thoughts together into sentences. My memory is not affected at all this time with ECT. The doctor has been careful to only do right unilateral ECT and not bilateral or bifrontal ECT which led to memory problems last time.
My family is surrounding me with help during this treatment. My brother drives my mom and I to and from the hospital downtown. My mom accompanies me through the several waiting rooms, and I’m discharged to her care. She prepares a sack-breakfast for me for after ECT. She cooks dinners too. My dad cleans up the dinner dishes and the kitchen counters for me.
My therapist asked me what I thought life would be like once these treatments are over. I don’t know if I’ll want to move, and if so, to where – back to CA for geography and culture, back to Chicago area for support system, to somewhere local to the family’s house to remain with their support. I do expect more independence: cooking, laundry, cleaning. But I am considering the benefits of staying with family, living in community.
I have now had 8 ECT treatments. My short-term memory is just starting to be affected, but with prompts I can remember things ok. My mood is slowly getting better, though. I’m not thinking about suicide and I don’t seem to be wallowing in depression. But I’m not enjoying activities yet. So I’ll continue with ECT three times a week for at least another week or two before we taper the treatments down to once a week or so.
I wake up at 5:15am on Mondays, Wednesdays and Fridays for ECT and get a ride with my brother to the hospital which is in downtown Dallas near his workplace. My mom goes with me as you need to be released into an adult’s care after ECT. We wait in the hospital’s lobby for a couple hours before ECT and then an hour or so afterwards too until my brother comes to pick us up. Then I relax for the rest of the day to let my body come down from the seizure. I’m grateful my family is supporting me through this treatment and I don’t have to go through this alone.
Today I was stuck 4 times to get an I.V. started. It’s the first time it took more than one stick. Ouch!! The only other problem I’m having with ECT is lightheadedness upon standing. Could be the ECT or the anesthesia. It started after the 4th ECT and isn’t getting better.
On Friday I had the first ECT in this series. It went smoothly with only the expected horrible all-over aches for two days now. I have the next three this week, Mon,Wed, Fri. When I am adjusted to the treatments AND I am no longer suicidal, I can move on into outpatient ECT treatments. Logistics for that is a bigger issue than it should be. Sigh. Family. Sigh.
I did not take on ECT lightly. I know I could lose more memories and cognitive function. But I can’t live with suicidal thoughts Every.Fucking.Day. I can’t live in the depths of despair Every Day. Medications are not and have not worked to keep me stable. Hospitals have lifted me out. Time with family has held a fall at bay. I have been told that ECT changes lives. I’m trying to have hope that it will change mine.
See, there’s a contradiction. Hope that it will change my life presupposes that I want to live. I don’t want to live suicidally depressed or cycling rapidly into and out of it. AND I have little hope at all that ANything can work. So death is my best option out of this quandary of hades’ making.
Want to know why I am still in the hospital then?
I have been staring into the abyss for two weeks. I have been very close to suicide, even in the hospital, where I am right now. I didn’t get to take my Chicago vacation because I was in a New And Good hospital. Excellent doctors and staff, comfy bed, decent food.
And still I struggle with life and death. It is deeply agonizing. Good doctors have taken me off three of my meds and added one. Med changes are miserable but usually necessary. One thing to discern is whether my suicidal visions are from depression or OCD, reopening an old argument. I want the death, but the visions come unbidden. So the argument remains.
With only a little persuasion, I have agreed to a full course of ECT – 12-20 sessions, three days a week. Yes, I have had bad experiences such as long-term memory loss and cognitive loss. I’m at the end of meds I can I can try. I’ve been told I’ve taken enough that I have a 5-10 percent chance of Any working at this point. I never did a full series of ECT before so I don’t know if it will work. I’m going risk further memory and cognitive issues because sometimes I want to live.
I need your love and support. I’m very alone at the edge of the abyss.