Keeping Records

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Joshua 1:9

For this post I am using notes that I wrote as I went through another course of ECT last fall. Reading through this I remember all “the feels”, as my son says, that I went through. I found it interesting that I don’t reference my faith much here. I am learning secular coping skills as well (DBT) and I often find that my faith and these other skills can often overlap. For example, a tool called “Turning the Mind” works very well with focus on Scripture. I have a list of Bible verses near my bed that remind me of God’s love and protection. I try to focus on these when I get overwhelmed.

I don’t want anyone to think that ECT is a horrible treatment. So much of popular culture has made it seem so, but it has been lifesaving for me. The worst pain I experience is my own fear and anxiety going in, and that is mostly anesthesia related! The treatment itself really is a disappointment if you are looking for horror. I usually only suffer some fatigue and a little brain fog immediately after.

1^st treatment October 29, 2020

                My first ECT treatment since August of 2018.  I was very nervous and had cancelled my initial appointment scheduled two days prior.  Dr. F was there and he was his usual energetic and kind presence.  Everything was going to plan but I was very nervous, so I looked forward to being put out and missing the rest of the procedure.  Unfortunately, during the procedure I regained awareness. Not full awareness, I heard voices and wanted to let them know I was still awake, only I couldn’t move or speak.  I tried and was horrified at my inability.  Fortunately, I slipped all the way under the anesthetic 30 seconds to a minute later.  When I woke up, this incident was immediately recalled.  Through sobs I tried to let Dr. F and the anesthesiologists know what had happened.  They were very sympathetic and took my experience very seriously.

                The day of or after this treatment, I spoke with Dr. H.  He explained that there had been an issue with the dosage of anesthesia, which would be adjusted with my next treatment. 

2^nd treatment November 3, 2020

                I don’t know how I got myself to this appointment.  If Dr. H had not been there, I don’t know if I would have been able to get myself there.  Peter brought me this day and he is a very calm person.  I prayed and asked everyone I could reach to pray that it would go well too.  My anxiety was almost unbearable.  I prayed and rationalized with myself, but I couldn’t get the previous treatment out of my mind.  I got there, had diarrhea and luckily went into the room almost immediately.  Dr. H came in before the procedure and told me that the changes needed had been made and there wouldn’t be a problem this time.  I trust him very much and that is the only reason I didn’t run screaming from the room!  This time all went well.  I felt lighter afterward and even voted later that day.  In the evening I attended my eating disorder program.

November 7, 2020

                Despite the positive outcome of the previous session, my anxiety got the better of me and I didn’t attend my scheduled appointment on November 7, 2020

3^rd treatment November 10, 2020

                My fear was taking on a life of its own.  I knew I couldn’t bail out again.  I would never go back and the only other option was medications that had unacceptable side effects.  I was okay at first, but by the time I was in the treatment room I was nearly hysterical.  I was so frightened that my body literally trembled.  Two nurses were assigned to me and they were angels.  I wish I remember their names, but they held my hand, listened to my ramblings and basically did not leave me alone until it was time for treatment.  Dr. H was there again, a calming presence in himself.  He again reminded me that adjustments had been made and that we had a positive outcome the last time.  I couldn’t disagree, but the anxiety had no rationality and rolled downhill like a snowball.  When I woke up I felt fine physically, but emotionally I was a hot mess.  I cried and cried.  I sobbed about how I was a useless mother, grandmother, wife and daughter.  I think I actually said I hated my mother in these rants.  My nurses helped me get myself together so I could go home.  Later I realized how I had behaved and was mortified.  I spoke with Dr. H, who completely nonplussed, told me that this reaction was common and I had nothing to be embarrassed about.  I think this is the first time I have ever doubted his word.

4^th treatment November 14, 2020

                There was no way I could continue to go on with the level of fear that I had been.  I looked through my DBT notes and books and found techniques that had helped with much lower levels of fear in the past.  I hoped that they would help me now in combination.  I brought music with me too.  Music that had deep meaning to me and had helped me through much more difficult situations in my younger years.  “What would I do without my music, What would I do without my song…”  This seems to be the strongest calming force for me.  I got to the hospital, went to the treatment room, and then had this serenity tested.  I waited about 1 ½ hours for it to be my turn.  I didn’t have my music and the nurses could not get an IV established after three tries.  To top it off, Dr. H wasn’t there.  I had strongly suspected that this would be the case.  Dr. F was there, and despite the earlier treatment, I also knew that he would take good care of me.  In fact, Dr. F was the only doctor I remember treating me during my last course of ECT that had saved my life.  I was fine.  My peace held, but the longer it got, the more the fear tried to regain control.  Fortunately, Paul was allowed to join me for a short while.  Just having his hand to hold and hearing his voice remind me that I was getting better from this was incredibly helpful.  The anesthesiologist was able to get the IV in (Just below my thumb, what a funny place!)  I guess I get the anesthesiologist next time too!  As usual, I prayed as I slipped out of consciousness.  Next thing I knew, I was waking up – no tears!  I wish I would know that this is how all future appointments would go, but I know better.  God’s grace held me up today, nothing else, but I was proud of myself too.  Techniques, music, kind words and touch are all just signs of that grace and I responded to them today.  I am home now after spending an afternoon here with my boys (Paul, Jon and Roland my dog).  Roland and I are getting ready to snuggle into bed.  He’s been out, no coyotes got him – ha, ha.  I am starting to feel lighter.  I wish I could say I was completely better, but that will take time and be well worth it when I am.  Notice I say when, not if.  I have much to do, God willing.

5^th treatment November 17, 2020

                Today was interesting and disappointing. It amazes me how smoothly the whole wave runs despite the number of patients being treated.  I rarely have to wait very long to be treated.  This is helpful taking into consideration the anxiety I experience before the procedure.  I realized the importance of being honest with your doctor today as well, even if it has disappointing results.  My moods are still swinging up and down on a daily basis.  I feel like I am “failing” ECT because of all of my fear and emotion both before and after treatment.  This morning when Dr. H asked how I was doing, I was honest about this and also honest about the static paranoia, passive suicidality, and the occasional visual hallucinations.  My sleep is still below optimum, with disturbing dreams and nightmares par for the course.  I’ve been waking up terrified, and if Paul is not there I need to turn the TV on so that there is light and distracting noise.  This is not how I want to be living my life.  As a result of all of this, Dr. H decided to increase the intensity of my treatment.  To me, this feels like a step backward, but Dr. H didn’t seem bothered by this at all.  He explained that it was necessary to get my symptoms under control.  I wonder if he ever doubts whether I will improve significantly.  This is not a question I want to ask, I don’t want to go there.  It only took three tries to get my IV today and I learned something along the way.  The vein below the thumb at the wrist is called the “intern’s vein”.  Apparently it is a very easy vein to hit.  I wondered why the nurses didn’t try it, but I wasn’t going to argue, seeing as they were the ones with the needles!  The anesthesiologist got it and I was quickly off to sleep.  Oh, my nurses today were Sharon, who was so sweet and Melissa who is very cheery and remembered me from the other day.  I remembered her too, yea!!    I got to tell them about Bernice and what a sweet cat she is.  I wonder sometimes if they ask because they are interested or because they are trying to distract me.  Probably a little of both.  It is encouraging that I am remembering these treatments.  I am hoping that continues as we go along.  That is what this little journal is for, so that I remember this time and if I have to do it again, maybe it won’t be as novel and scary.  When I woke up I was a little weepy again, I don’t know why.  Paul brought me to Peter’s where I slept the rest of the afternoon.  I hope this doesn’t turn into a long, drawn out course of ECT, but I will do what I need to do so I am better and more functional.  Thank you God for being with me.

November 30, 2020

Night before note.  I did well with anxiety today.  Prayer and a focus on fact have really helped here.  I also know that I have the Seroquel if I need it.  Today, I was starting to freak out and I remembered what got me through all of my emotional turmoil in my teen years.  I sang my heart out for over an hour.  When I was done, I was as calm as if I had taken meds, without the side effects.  What a gift.

I am going to do well tomorrow.  I will go bravely and not let my mind get the better of me.  Paul was talking about his MRI today, and I remembered how completely freaked out that made me.  I couldn’t go into the first one, I had to use the open one.  Even that was completely nerve wracking.  ECT is so much easier than that was. Good night for now!

December 1, 2020

Yeah! Another successful ECT day.  Peter and Paul are my brick walls, they are my strength in all of this.  We actually made it in early this morning.  As usual, we didn’t wait for long before being called into the unit.  I wish Paul and Peter could come with me, but I certainly understand why they can’t.  The nurse, I think her name was Suebeth, was so kind and comforting.  The nurse who started my IV was a pro, one shot in the crook of my arm!  Dr. H came in and asked me the usual questions and I answered that everything was great.  I think he has a BS sensor, at least I did and then told him about what had happened about church this week and how frustrated and sad I was.  He asked about the paranoia too.  At first I didn’t think that was a pertinent question, but it is definitely part of why we are leaving our current church.  I am too uncomfortable and unable to determine if I am paranoid or not in certain situations.  Dr. H is such a calming presence, I know I’ve said that before.  I think what really makes me comfortable with him is that he has never shown any sign of being judgmental.  Nothing I do is wrong or stupid.  He is just concerned with how it makes me feel and how it affects me.

ECT itself went well.  I woke up tired and confused, big surprise.  There is always a nurse there to make sure you are not alone when you wake up.  It could be very frightening to wake up from that alone.  After sitting for awhile and getting myself together, they called Peter and brought me down to his car.  I barely remember the drive to his house, I was so sleepy!  Pete bought me tea and I settled in on his couch.  He always gives me a fluffy, heavy blanket.  I slept for awhile, snacked a little, watched some tv and slept some more.  Pete came out to check on me periodically.  I try not to be a nuisance to him while he is working.  Finally, Paul came at around 4:30.

Paul and I drove home the long way and discussed many things going on with us.  I love the fact that he does not treat me like an invalid or moron while I am doing these treatments.  I am simply Beth, his Beth.  We talk about things like we always do.

Now I’m home.  I wanted to get these notes onto paper before settling in for the night.  I’m sure I’ll have more to add to all of this, but that will come later when the fatigue is cured by a long night’s sleep.

May 31, 2021

Wow!  I didn’t expect 12/1 to be my last treatment in this course.  COVID hit our house.  I delayed until Paul was well, but then Jonathan and I came down with it too.  It was January before I was in any shape to consider continuing.  Dr. H and I met during this time and kept tabs on how I was doing.  I had really improved with the treatments I had and Dr. H said that we’d stop where we were and play further treatments by ear.  Here it is six months later and I am better than I’ve been in years.  I hated this round of ECT, but am so grateful that I had a skilled psychiatrist who walked me through it.  It was worth it.  I wanted to add this final note so that if I ever do need ECT again, I will not go in blind.  Even now, without my notes, I would have forgotten how this last course went.  It was a little rocky, but I had great doctors, strong support from my family, and faith that carried me through.  Amen!!