Depression Marathon Blog

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Diagnosed with depression 18 years ago, I lost the life I once knew, but in the process re-created a better me. I am alive and functional today because of my dog, my treatment team, my sobriety, and my willingness to re-create myself within the confines of this illness. I hate the illness, but I'm grateful for the person I've become and the opportunities I've seized because of it. I hope writing a depression blog will reduce stigma and improve the understanding and treatment of people with mental illness. All original content copyright to me: etta. Enjoy your visit!

Friday, March 29, 2019

Concerned about health

The good news? I'm feeling better. I had my sixth, and hopefully last, Ketamine infusion a few days ago. My mood has improved. I'm not back to normal yet, but I'm relieved and grateful to be feeling better. I'm hoping things continue to slowly improve.

I'm getting back to some of my normal activities. I returned to work. I worked a few hours on Monday and Wednesday, and it went well. It was so nice to be interacting with patients again, and the reception I received from the staff was quite humbling, too. Actually, it was humbling and unexpected.

I'm not trying to be modest, but I really was surprised so many staff were happy to see me, just as I was surprised by their gift of flowers and kind words on a card when I was hospitalized. I guess I don't see myself as part of the bigger picture in my facility. After all I spend 99% of my time within the confines of the physical therapy room. Sure I interact with the rest of the staff, but I didn't know they felt anything more than neutral about me. Like I said, I was humbled by the welcome I received upon my return.

I've been attempting to return to my exercise routine, too. Unfortunately, that's where the bad news comes in. I'm continuing to experience fatigue beyond the level of what I would expect for the amount of exercise I'm doing. It's been frustrating. I go through this every time I recover from a severe depression episode, but that doesn't help me feel any more patient with the process.

I find it especially difficult to be patient because exercise hasn't been feeling good. In my entire history exercise has always been my number one tool for feeling better. But exercise over the past couple of weeks only made me feel worse. I'm getting more concerned about my physical health.

My visit to my doctor this morning did nothing to quell those fears. We reviewed what happened last Friday when I ended up in the ER. Like the ER doctor, she was concerned about my blood test results. We reviewed them together. Not only were my platelets low, my hematocrit was low, several blood cell counts were low, and she pointed out my body did not seem to be producing red blood cells. I also had a low grade fever this morning. That was a new development.

I appreciated the doctor's thorough exam and consultation. Fortunately, her physical exam did not reveal anything abnormal. She ordered new, more complete blood work, and I'm awaiting the results right now. She was concerned about my bleeding risk, secondary to the low platelets, so she discouraged me from exercising for awhile. And I'm going to monitor my temperature for the next several days.

That exercise recommendation is going to be tough to follow. I already feel heavy, slow and fatigued. Exercising even less is going to be easy physically, but it's going to be a mental challenge. Like I said, exercise has always made me feel better, and sitting around has never made me feel better, so I'm going to have to find a compromise, I guess.

I return for a follow-up doctor visit next week. Until then, I guess I'll walk, rather than ride or run, and await the results of my blood work. I'm feeling anxious about all of this. I'm used to being concerned about my mental health, and I have too much experience with injuries, but I have little experience dealing with generalized, and still unknown, physical ailments. It's scary. I don't like it. But I'll deal with it. I hope the docs figure out what's going on soon.

Saturday, March 23, 2019

First the brain, now the body

No. I wouldn't say I'm better. My depression symptoms continue. I feel low, isolated, and hopeless most of the time. It doesn't matter that I have lots of friends, coworkers and professionals who care, the nature of this illness is to negate all evidence to the contrary. I know that. I'm trying to fight it, but so far I've had little success.

I have had glimpses of feeling lighter and more hopeful, but they don't seem to last. I'm trying to do what I can, but my brain is still so addled with negative, hopeless thinking, it's difficult to keep moving forward. But I'm trying.

Yesterday I actually made it to the gym for a light workout. I did some spinning on the bike for 15 minutes, rested about 5 minutes while trying to decide whether to stay or go, and then I performed 20 minutes of light to moderate (mostly light) strength/cardio training. I was pretty tired afterward, which I attributed to depression, so I sat down to rest and text a friend. That's when it happened.

About 10 minutes after sitting down I had another episode from the "you-can't-make-this-shit-up" file. Suddenly my pulse rate shot up. My heart felt like it was beating irregularly. I got dizzy and lightheaded. My legs felt heavy and weak. I started breathing heavily, and my hands went numb. I barely made it to the front desk to let them know I wasn't feeling well.

The staff got me into a chair, checked my blood pressure (a bit low), monitored my pulse and breathing (still high and heavy), and when I just about passed out they called an ambulance. I was so embarrassed. I hadn't done much of a workout, and I had been resting for at least 10 minutes when this all began. It wasn't anxiety. It was just weird.

Long story short, I developed a significant headache on the way to the emergency room. Blood tests revealed my platelets were low and had dropped significantly as compared to a blood test performed just 3 weeks ago. The combination of headache and low platelets led to concern about bleeding in my brain, but two CT scans were normal. So they gave me fluids and pain meds, monitored me for 5 hours(!), during which time my symptoms slowly improved, and then they let me go home.

The doctors didn't really have an explanation for what happened. They were concerned about the platelet count, especially the fact that it had dropped so significantly so rapidly, and suggested I follow up with my regular doctor in a week. Other than that there were few clues as to what may have caused such an uncomfortable episode. My blood sugar was a bit low but not so low as to cause the significant symptoms I had. I wasn't dehydrated. I had eaten and drank everything as usual that morning. There was no change to my routine, medication, etc... No obvious explanation.

So now I'm off kilter mentally and physically. I still have a low grade headache. I still feel the heaviness of depression. And now I'm afraid to challenge myself physically. It's tough enough getting active after a bout of severe depression without the added worry of my body physically rebelling, too! I don't know what to think or do now. I feel low, isolated, hopeless...and now stuck. I'm not sure what to do next.

Wednesday, March 20, 2019

Broken

He says, "But we grow stronger when we break." As broken as I am right now, I'm not so sure about that. I hope he's right.

Sunday, March 17, 2019

Frustrated at 65%

I'm back home. I left the hospital yesterday. I had a total of 4 Ketamine infusions over the course of my 17 days there. Seventeen days and 4 infusions later, I'd say I'm at about 65% of my baseline. That's a lot of time and effort for 65%. That's a lot of missed life for 65%. I'm frustrated.

Yes, I'm happy I'm no longer at minus 65%, but I know I could have gotten more out of this hospitalization than I did, and that's frustrating. The problem was not with the unit (which was comfortable and safe), the nursing staff (who were absolutely incredible as usual) or even the programming (though I've been through it multiple times). Each of those things contributed to improving my mood, but they could only take it so far. I needed more intervention than that.

Unfortunately, the intervention which was decided upon, the reason I went to the hospital at all, Ketamine, was carried out in an unplanned, fly-by-the-seat-of-our pants method. The problem was my inpatient MD. He knows me well from previous hospitalizations, but I guess we just aren't a good fit. He seems to have me packed tightly in a box from which I cannot escape.

No matter how hard I try, no matter the objective proof to the contrary, this MD just can't imagine me as anything but a baseline sad, suicidal, dysthymic, moderately functional, friend-less, solitary being. And that did nothing to improve our relationship with each other or of his treatment plan for me.

His bias against, or lack of complete knowledge of Ketamine was also transparent from day one. During my previous treatment with Ketamine (different doctor and during a clinical trial) I received 3 doses of Ketamine in the first 7 days and then one dose per week for 4 weeks. The total of 7 infusions, with those first 3 every other day, worked like a miracle. It worked for 18 months! Yet there was no attempt made to follow that plan this time. There was no plan at all.

From day one, inpatient MD scheduled one infusion at a time, and since Mayo Clinic only does one infusion per day (yes, you read that correctly), by the time he decided to schedule another infusion, the schedule was already full for the week. Luckily, there were some cancellations in there, but the haphazard timing didn't do me any favors, in my humble opinion. Not only, perhaps, was the varying schedule not clinically as impactful as it could have been, but the randomness of it was also incredibly stressful.

MD rounds were difficult and anxiety provoking. I never knew what was going to happen next. For example, when I gave the MD feedback that I wasn't feeling better after an infusion he suggested we should stop the infusions because they obviously weren't working. Yet, when I gave him feedback that my mood improved following an infusion, he suggested we stop the infusions because I was better. This happened after every single infusion. There was no commitment to a plan. There was no plan, period, and the constant threat of pulling the plug on Ketamine, with no alternative plan suggested, left me feeling helpless and hopeless.

I expended an awful lot of energy advocating for myself, which was stressful and exhausting. I felt like I was always on the defensive during MD rounds. This did nothing to change Mr. MD's perception of me as some sort of difficult patient whose self reports he didn't appear to trust. The more I advocated, the more it seemed to reinforce his opinion of me in that box. It was like a boxing match where I had no chance of even landing a blow. Nothing I said or did mattered. And there still was no plan!

Fortunately, the two doctors with whom I had contact over the weekends helped immensely. For example, inpatient MD felt we should stop the infusions after I sobbed through the second one because, he told me, obviously the infusions were making me worse rather than better. That statement led to a lot more sobbing, as it crushed any hope I had of getting better. It terrified me. And when I asked what we would do if we quit Ketamine, inpatient MD offered no plan. Turns out, it was an inaccurate statement, but I didn't know that until 24 hours later.

Twenty four hours later the weekend MD explained the various responses a patient may have during and after a Ketamine infusion, something which had not been explained previously. He noted sobbing through one infusion did not mean it was a failure. He told me in light of the fact I had been tearful prior to the second infusion it made perfect sense to him that the Ketamine might have caused me to sob during the infusion. Nothing to worry about, he said. It did not mean the Ketamine wasn't going to work.

The second weekend MD, with whom I met yesterday, entered my room with a big smile and said, "There's one of my favorite distance runners in Rochester." Even though I had no recollection of him, he knew who I was from sharing the roads and races with me over the years. He even remembered me running with my previous lab, Puck. He didn't have to be convinced, he knew I was a fully functioning, happy human being outside of the hospital. That made all the difference in the world.

I'm happy to be home. But I'm also a little concerned to be home, as I don't know what to expect. I'd certainly like to be feeling better than 65 percent. My worst fear is my mood will slide again. Actually, my worst fear is my mood will slide so far as to render me hospitalizable again. But I don't feel I can go back there.

Feeling like the hospital isn't a great option is daunting. It puts pressure on me to continue pushing through, regardless of how I feel. But I can't go back there and continue to do battle with a doctor who I don't believe believes in me. I can't take more time away from my life without a definitive plan to get me back to baseline.

Baseline: happy with the life I've built, grateful, active and energetic, loving and kind, generous, reliable, competent, fun, sometimes downright silly, 100% functional, and with many supportive friends and coworkers. That's who I am. That's who I want to be again.

Thursday, March 14, 2019

Scary Stuff

Here's one symptom not mentioned in the Diagnostic and Statistical Manual used to diagnose depression, total blackout. In speaking with friends and coworkers I've become aware that I remember little to nothing from approximately February 20th through my first inpatient day on February 28th. I've been reconstructing things based on their accounts and by reviewing my texts, e-mails, and blog posts. It's pretty frightening.

For example, it was frightening to be told by a coworker that she came to visit one evening. "Remember," she said, "you wrote a blog post about it." Really? I checked. Sure enough, there was a blog post about my coworker coming to visit and giving me a hug. I don't remember that.

Worse, in that same blog post I wrote about going for a drive in the dark. Nothing. I don't remember that at all. I wonder where I went, how long I was gone, or if I even locked my house? Who knows, maybe I didn't even shut the door! Going for a drive, completely sober of course, and having no recollection of it really scares me. How does that happen?

I still don't know how it happened. So I'm trying to piece together the last week of February, 2019, so I at least have an idea of what occurred. One thing is certain, I went downhill fast! That scares me, too.

There's unfortunately another thing which has become quite clear. During the last week of February I scared the crap out of my friends and coworkers. That makes me sad. Every single person who has talked to me in the last 14 days talked about how frightened they were. I hated hearing that. They tried everything, it seems, to get me into the hospital earlier, but I wouldn't go. I'm sorry about that.

It seems things got so messy and so ugly so fast I was just lost. I hate that I scared people. I hate that they were worried they would wake up to hear I was dead. As I reconstruct what happened, I get it. I should have been scared, too. I wasn't, I guess, but now I feel sick to have worried them so much.

This episode was, and kind of still is, a very scary dive into depression. It was fast, and aggressive, and obviously too much for my brain. I couldn't even form memories! It's still mostly a blur. My broken brain seems to have taken a rocket ship into the black hole over a period of 7 or 8 days. I was sick.

When I'm not well, at times like this, my friend Wendy always says, "I hate your sick brain!" Me, too, Wendy. Me, too. I'm sorry my sick brain and I frightened people.

Saturday, March 9, 2019

The trigger question

The answer, of course, is nothing. Wait, make that nothing! How many of you know where I'm going with this? If you have depression I bet you're all over it. The question is, "What triggered it?" And by "it" the well-intentioned friend, relative, stranger on a train with whom you are speaking of course means your depression. What triggered your depression?

I get it. Depression sounds a lot like depressed. So let's review. Depressed is a feeling. Depression is an illness. Or let's put it another way. Depression is an illness. Depressed is a feeling. Asking a person with depression what caused their relapse is invalidating. It demonstrates misunderstanding. It implies blame and fault. Nobody is at fault for having depression.

Like I said, I get it. It's a fair bet that everyone on the planet knows what it feels like to feel depressed. And feelings, being the fickle things they are, often have a reason behind them, a trigger. Boyfriend breaks up with me, dog dies, dessert splats on the floor; I might feel depressed, and with good reason! Feeling depressed is normal.

Depression is not normal. Just as cancer, multiple sclerosis, rheumatoid arthritis, and Type 1 diabetes are not normal. The commonality of each of these is illness. Illness is not a normal state of being. Illness is the result of abnormal functioning of something in the body. In the case of Type 1 diabetes the pancreas is the culprit. In the case of depression, the abnormally functioning organ happens to be the brain.

Because illness is the result of abnormal functioning, we generally intervene with some sort of medical treatment. Those interventions, be they radiation or medication, usually combined with behavioral changes (i.e. different diet, more exercise) allow afflicted persons to live comfortable, well-adjusted, productive lives for long periods of time, sometimes years.

Unfortunately, despite the best medical interventions and the healthiest of lifestyles, sometimes cancer returns, MS causes blindness, RA leads to irreversible joint deterioration, and diabetes gets nearly impossible to control. There is a worsening, a relapse, of abnormal functioning--of illness.

Unlike worsening depression, however, I have yet to hear someone wonder aloud what triggered somebody's cancer relapse. It would be ridiculous! Everybody knows a person can be doing everything right, yet the cancer returns. It's a given. It's understood. We may not like it, but it's understood.

Depression, despite being an illness of the brain, gets no such complimentary treatment. I was doing everything "right;" taking all my medications as prescribed, seeing my doctors as scheduled, going to my recovery meetings as usual, maintaining my sobriety, exercising as able, eating right and sleeping well. But just like that nasty cancer, my illness, depression, returned. I had a relapse.

Depression does not require a trigger. Yes, it may be triggered, but the reality is usually different. Like any other illness, depression, especially treatment resistant depression like mine, reoccurs without provocation.

Asking a person with depression what caused their relapse is invalidating. It demonstrates misunderstanding. It implies blame and fault, two things one would never consider implying to an MS patient.

I am not at fault for my current state of being. I did not cause it. I am not a bad person, and I have nothing to be ashamed of. I have a serious, persistent, deadly illness. I do my best to keep it under control and live a life worth living. But sometimes, despite my best efforts, it reappears for no reason whatsoever. Unfortunately, that's what some illnesses do.

I am not depressed. I have depression.

Thursday, March 7, 2019

Tough days

I've had a couple of very tough days since my first Ketamine infusion Tuesday afternoon. Prior to the infusion and for awhile after the infusion, my mood was improving and I had more energy. Unfortunately, over the course of one hour Tuesday evening my world went dark again. Since that time, and especially today, I've felt nothing but heavy, slow, low and discouraged.

Today I felt like I was being swallowed by a nebulous, slow-moving black mass. It never stopped advancing, and I couldn't get away. I was too heavy. It was actually difficult to physically move. My brain was slow, too. Any thought or action took all of my effort and took place at a snail's pace. I spent much of the day in bed. Anything more was just too much.

As I laid there, unable to sleep yet unable to do anything differently, I hoped I would just slowly stop breathing. I felt like I was barely breathing anyway, so it didn't seem too far to go. It certainly would have been much less painful. But of course I didn't stop breathing. Instead I asked my nurse to sit with me for a bit, something at which I do not thrive, asking for help, that is. It was comforting somehow to have another person in the room. She was the right person for the task, and I was grateful for her support.

I guess that's why I'm here, for those moments or hours or days when my will to continue gets pummeled and negated by my depression symptoms. I'd much rather be the pummel-er than the pummel-ee, but that just wasn't the case today. Hopefully, tomorrow brings something new and different. It won't take much for it to be better than today.

Monday, March 4, 2019

The epiphany

I don't often share links to other material on this blog, but I've got one for you today. And I want to share it because it is the reason I composed my previous post, a space holder. Yesterday I was sitting in a morning group about gratitude, which the group leader began with a TED Talk, this TED Talk to be exact. Take a moment to watch it.

I was happy, because I instantly recognized the TED Talk she had chosen. I had already seen it and enjoyed it several times. But I hadn't seen it recently. Within minutes, I was surprised by tears welling up in my eyes. Soon, they were running down my cheeks. And by the time the older man began to speak in the middle of the video I had to leave the room. I was sobbing.

I don't have access to my computer in the mornings. I came back to my room, sobbing, words spinning in my head, sadness enveloping me. I began composing my blog post in my head, but that wasn't helping, so I finally broke down and picked up a pen and paper! (What??) Words flew onto the page almost faster than I could write. The piece, a space holder, was finished in less than 5 minutes.

Now this may not seem like a big deal to you, but this was a monumental moment for me. Backstory: I experience gratitude as the greatest gift of my life. That may sound like I'm overstating things, but I've thought long and hard about this. Gratitude gives my life meaning. It's a gift with which I never even shared a continent until 13-14 years ago. Most of my life was devoid of the concept. Gratitude is the greatest gift of my life. I make it a priority to practice gratitude every single day.

So here's the thing, those beautiful, unbelievable, amazing, time lapsed photos at the beginning of the video stirred nothing within me. Nothing. The words, especially those of the older man, which I had previously found so soothing and profound only deepened my grief, as they were, in that moment, barren of any emotional connection or meaning. Here was gratitude personified, and I felt nothing, no connection whatsoever.

I realized I was disconnected and dead inside. That realization was excruciatingly painful; way worse than anything this universe might otherwise have thrown at me. And it was that disconnection and death which depression not only represented, but created! Clarity! That's why I hurt! That's why I could barely move! That's why I felt hopeless! That's why I wanted to die. I had lost my compass, my touchstone, my meaning; the pillar of who I wanted to be, who I strove to be, had been desecrated and destroyed.

Depression was the vandal which desecrated my soul, sucked out my life and left only a shell in its wake. I was purposeless, empty, and doing nothing more than taking up a space. That, my friends, is a feeling I wish never to share.

The rest of the story: In the aftermath of yesterday's moment, I found some fight. Rather than further raping my soul, depression took a bit of a punch. I got a little angry. I don't like to be violated, desecrated and destroyed. So I landed a blow, albeit not so powerful but a blow nonetheless, and I went looking for gratitude today. I still feel tired, hopeless and empty. I'm not cured. But that painful moment stirred something in me. I'm grateful for that.

Sunday, March 3, 2019

.....................a space holder......................


depression is not about feeling sad,
it's about feeling nothing at all. 
vacant,
devoid of all appreciation, enjoyment, love,
and worst of all--
of gratitude.

without gratitude there is no reason to be.

there is no experiencing of an experience,
it's just black and white.
there is nothing between the lines, 
no meaning to the motions,
no colors to the landscape.

without gratitude
there is no living in this life.
I am simply a space holder,
an empty vesicle without purpose--

Why bother?

if I can't feel gratitude 
life is not living, 
it's a series of disconnected motions
going nowhere
meaning nothing.

the realization that depression steals my gratitude makes me sad.
depression doesn't make me sad. 
I am sad because I cannot
feel
see
smell
taste
or touch
the wonder with which I am surrounded.
a smile
an interaction
a word
a movement.
there is no meaning behind any of it
if I cannot feel gratitude.

the cruelty of depression is not sadness.
sadness is, at least, a feeling.
the cruelty of depression is the dearth of feelings.
it is the vacuum which is my soul.

Friday, March 1, 2019

Inpatient

I think I got here yesterday. It's difficult to keep track of the days when one melds with the next and the next and the next. My brain is befuddled. My energy nonexistent. Yes, it must have been yesterday because I slept almost all day today. Even when I wanted to, I couldn't stay awake. This depression is wiping me out.

So here I am again. Inpatient psych. There's not much more to say than that. I guess it's where I need to be, but it still sucks having to be here. I'd much rather be sitting in my living room, in my recliner, Jet curled up at my feet, watching M*A*S*H reruns. Unfortunately, my brain wasn't allowing such simplicity. I might have been staring at the television, but my broken brain was focused on death instead.

The current, tentative plan is to begin another trial of Ketamine infusions. Unfortunately the earliest start date won't be until next Tuesday. Ugh...it's going to be a long weekend. But those of you who've been following along for awhile know that Ketamine was miraculous during my last significant depression relapse, (18 months ago!) so I'll wait.

Unlike my last treatment, however, I will not be enrolled in a clinical trial this time around. In other words, I'll be paying out of pocket for the entire treatment. Ketamine isn't covered by insurance. (Note to insurance companies: If 7 drug infusions over the period of 5 weeks kept someone with severe, persistent, treatment resistant depression out of the very expensive hospital and allowed that person to be a contributing member of society for 18 months, how is it less expensive for you NOT to pay for the medication??) Just wondering.

No worries, though, I will pay what I need to pay to get my life back. Even though my brain tells me differently, getting my life back is worth it. I'm worth it. I like my life. I have a good life, a few friends, fabulous coworkers, a couple dollars in my pocket, a job I love, an adorable dog, and many adventures yet to conquer. Depression is a foe I wish upon nobody. I pray it's a foe I can beat back, make that pummel into submission, at least one more time.



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