6 posts tagged “words”

“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

Posted May 19th, 2015 by

Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others.

How it all began:
In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and I tried suicide. My parents then put me in a psychiatric hospital, where I stayed for about a year.

What schizoaffective disorder feels like:
When not on any antipsychotic medications, I feel like; others could hear my thoughts (broadcasting), that I could hear other people’s thoughts (mind reading), that I could communicate by thought with others without speaking a word (telepathic communication), not only could I communicate with other people in this way but I could communicate with other things as if they had human like qualities (anthropomorphic telepathic communication), believing that I am super important to the world (grandiose thinking), that others were out to kill me (paranoia), and I would become very delusional. But, now after taking the antipsychotic medications for some time, not only do I not believe that these things (powers) were never true for me, I also believe that no one else has these powers. Maybe some people may have others out to kill them, but this is not true for me. Also, for over 35 years (1977 – 2013) I believed that God would talk to me personally and would give me personal instructions, but now, I don’t believe this is/was ever true.

On top of having psychotic episodes, my mood has fluctuated from being euphoria, extremely joyful, super happy, with very little sleep, feeling like I didn’t need to sleep, etc. to suicidal lows, dysphoria, deep dark depression, and sleeping a lot with not being able to get out of bed, etc. My mood swings greatly in duration and intensity for reasons I am not fully aware of.

My quality of sleep is very poor. When I lay down in bed to go to sleep, my body/mind tortures me so much that if I haven’t gone to sleep within about five minutes I get up out of bed to relieve the torture like sensations. The torture sensations might be; restless legs, a general restlessness of my body or mind, a sensation in the back of my throat, an itch, or any thing that my mind can not stop focusing on. Once I have gone to sleep, I only sleep for about an hour before I awake. Once awake I go through all of the problems of falling back to sleep again. The sleep I do get is not refreshing. My mood and sleep go hand in hand, when my sleep is bad, my mood swings are bad and when my mood swings are bad, my sleep is bad and vise-a-versa. I have had a recent improvement my mood/sleep problem. It may be due to my new medication, Latuda that I am taking. Only time will tell if Latuda will continue to help.

What happened when I tried to stop taking my meds:
I stopped taking all my medications because I wanted to see if they were doing anything for me. Everyone told me that this was a bad idea, but I did it anyways.

As time progressed I could tell that my wife, Audrey, wanted to confess something to me, but was scared that I would not be able to handle it. I could also tell that Audrey talked to my counselor about this, and that my counselor agreed with her not to tell me. They were keeping something a secret from me. We danced around the issue, as if there was a white elephant in the room that no one was willing to talk about.

I figured that Audrey was having an affair with the senior pastor of a local mega church that she belongs to. It appeared to me that Audrey was willing to break off the affair and go public with it, but the pastor was not. To keep it from going public, I figured that the pastor hired a hit man to kill me. The more I thought about it, the more I was sure of it.

One day after Audrey left for work, I panicked. I started running. The first thing I did was try to get a hotel room without showing ID. However, all the hotels that I tried required ID. The way the hotel staff acted made me all the more sure that the pastor was getting help in finding where I was. At this point, I went into a Jack in the Box to get something to eat, and I could tell by the way people were acting that they had received the reverse 911 call on me. I figured the senior pastor that was having an affair with my wife knew that I knew about the affair and that I was running, so he convinced the police that I was either a danger to myself or to others, and that they should put out a reverse 911 call to find me.

I quickly left the Jack in the Box and got back in my car. I drove to a Rite Aid store and bought some bottled water, because I was planning to hide in the desert. The employees at the Rite Aid seemed to be acting strange around me, as if they, too, received the reverse 911 call on me. I quickly got in my car and drove into the desert, trying to find a safe place, but I saw a helicopter in the distance, and I knew I was not safe there either. I got on the freeway and headed north.

I had not been sleeping well for weeks and was getting very tired. Having a bottle of 200-milligram caffeine tablets with me, I took one. It helped only a little. I was also taking them to help me feel better, and I already had a lot of caffeine in my system. After driving for about fifteen minutes, I felt sleepy again, so I took another caffeine tablet. This sequence of events continued. I was taking a caffeine tablet about every five to fifteen minutes.

After driving for about two hours, I was scared that I might be a danger to myself or, worse, to someone else, because I could easy fall asleep behind the wheel. I pulled off the freeway into the parking lot of an old run down hotel. I figured that these people would be willing to hide me.

I booked a room, even though I had to show my ID. They too appeared to be acting strange. I figured that my picture must be on TV, so that people could be on the lookout for me. Everywhere I went people were looking at me funny. At the hotel I tried to lie down on the bed to get some rest, but I could not rest. I was wired. I got back in my car and drove north again.

After driving for about another hour, I came to the conclusion that I could not hide, and that they would eventually find me and kill me no matter where I went, so I stopped running. I called Audrey and told her I was coming home. Still very tired, I got back in my car and took another caffeine tablet or two.

I do not remember if my son called me or if I called him, but my son and I talked. I told him that I thought his mother was having an affair. Talking to him did help me stay awake while driving. After talking to my son, I called a friend to have him talk to me to help me stay awake. I was still taking a caffeine tablet about every five to fifteen minutes.

Half a bottle of caffeine tablets later, and with the help of everyone, I finally made it home that night. My wife and I got ready for bed, but I could not get any rest.

I got up and started playing on my computer. This was no help, for I started to worry about the Internet crashing, which would cause havoc to our society. Not only was I worried that the Internet could fail, but I believed that I could make it crash, if I wished. This really bothered me a lot.

The way I figured it was, if I did not make it crash, myself, it would someday crash by itself. The more I thought about this, the more I was sure of it. The problem was that if it crashed later we would be worse off and our society would not be able to recover.

I figured that the Internet could not handle human emotions, so I decide to make it crash that night by causing it to be jealous of my other computer—that was not connected to the Internet. I told my computer that was connected to the internet, that I loved my other computer more.

In the morning, Audrey took me to the emergency room at a hospital where there was a behavioral health unit.

Now, I was really afraid of just about everything and everybody. I thought that the internet was out to get me. I believed that the FBI, CIA, and Homeland Security were called in because I was viewed as a national threat. I also believed that the hospital needed time to get agents into the locked ward to act as patients.

After spending most of the day in the emergency room, I was all the more sure that these things were true. I thought they would put me in the behavioral health locked ward, but they did not. Instead, they put me on the surgical floor.

Now, I really believed something was up. Why would they do that? This scared me even more.

On the surgical floor, they had a nurse sit by my bed. I thought she was working for the government to find out if I was a national threat or not. I told her everything about my relationship with my computers and how I caused the Internet to crash. At this point, I thought the Internet had already crashed and it was all over the news, because the hospital staff would not let me watch TV.

To make matters worse, I was craving sex, badly. I was hoping the nurse would be willing to do something with me, if Audrey gave her okay. It seemed to me that Audrey did not want to have sex with me, and she might be willing to let me play with someone else. So, if she was willing, I was willing. But this never happened.

I was scared out of my wits. I wanted the hospital staff to put me in lock-up. Believe it or not, I felt more comfortable in the lock-up ward than I did on the surgical floor.

Later they put me in the mental health lock ward and placed me on a three-day hold, and then on a two-week hold. They stated that I overdosed on caffeine, that I was a danger to myself and others, and that I could not care for myself.

At first I refused to take the medication they wanted me to take, but later I did take it and I got better.

Now I can see that I was very delusional.

Where I’m at today:
My life has been full of ups and downs, twists and turns, which have taught me an important fact, keep the main thing the main thing, which is to love God with everything I got by loving others as I would have them love me with forgiveness, compassion, endurance, patience, mercy, grace, charity, tenderness, strength, wisdom, kindness, and with all that causes good to happen. The way I see God is He is more of a Spirit than a being, like Santa Clause is more of the spirit of giving at Christmas time than a actual being. Different psychiatrists have given me different diagnoses and prescribed different medications at different times in my life. When I am not suffering with my symptoms of mental illness, I enjoy working with my robot, studying and doing math, writing books, writing computer programs, and thinking about God stuff. If you have any questions either about myself or my fight with this illness, please ask me.

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“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS

Posted July 17th, 2014 by

If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below.

The private, invisible pain of MS

Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day.

I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking.

Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things you might do each morning without a second thought. Maybe you play classical piano. Maybe you type quite fast. I did. How are you at your hobbies and your passions with your hands impaired thusly? Having trouble with pens, spoons, forks?

Ever had a hand cramp? Add a few of those in…but, instead of being able to stretch your hand for relief, you find that when you do, instead of clothespins you now have mousetraps on your fingers. Continue trying to go about your regular life without giving thought to this. Throughout the next few days, have someone randomly swap clothespins and mousetraps for arbitrary reasons…perhaps you put your hand in water that is a bit cooler or warmer than your hands are happy with – snap! Maybe your hands don’t want to scrub shampoo in your hair – snap! Pet the dogs as you always do when they rub up against your hand – snap!

So, it’s lunch time now and you’d really like a salad. Ordinarily getting all the veggies from the fridge and prepping them isn’t a big deal…suddenly it’s become a chore that is taking much more thought than you’ve ever dedicated to a salad prior. And the amount of time it is taking is staggering. Once again, the sharp knife has slipped out of your grasp because your fingers are becoming a bit numb and your grasp isn’t quite what it should be. This time as it falls, it slices your right hand and you have to pause to deal with this additional issue. Have fun trying to maneuver that Band-Aid!

So now you’ve got a combo of mousetraps and clothespins on the ends of your fingers, a throbbing cut, and you give up on eating the salad after the fork drops to the floor *again*. You reach to the floor to pick up that fork for the last time, you swear, and suddenly a mousetrap snaps on your inner elbow! What the heck! A reactive jerk knocks your cut hand into the edge of the table, which causes a clothespin to pinch on the top of that hand. As those new pains begin working their way up your arm, your shoulder begins to ache. Not really an ache…more like someone jabbed an ice pick into the joint!

You were supposed to be somewhere this afternoon, but you realize that driving would be far too dangerous…and anyway, how on earth are you going to manage a steering wheel when each time you even move your right arm, the pain sears from shoulder to fingertips? You somehow manage to press the right buttons on your phone to call and cancel the plans you’d been so looking forward to.

It’s meal time and your neck is starting to cramp from the tension of trying to figure out something you can prepare for your family while the pain continues to whine at you continually. You aren’t in a great mood, which gets ill looks from your spouse as they walk through the door and ask “what’s for dinner?” to which you growl in reply. “Man, I had a day from hell at the office,” they begin, and you really want to be supportive but find yourself barking, “I also had a day from hell…could I get some help in here?”

After standing on your feet in the kitchen for the usual amount of time to prepare and clean up from supper, you realize that now all your toes have clothespins on them. Maybe a hot bath will help, you think…and proceed to lock yourself in the bathroom while running a steaming hot bath (you’ve always liked them super hot)!

You’re so eager to jump in and relax, just knowing it can only help. But, after a few seconds in the ultra warm water, your legs turn to limp noodles and you are feeling as if you will faint. The room is steamy and now all you want is cool air. But, your legs won’t obey your brain and get you out of the water. After some battle with the plug, the tub begins to drain and you use your last bit of effort to turn on the cold water and let it run over your feet. For a few moments, this helps and just as your breathing starts to slow and you’re pondering how to get out of the tub, the clothespins on your toes turn to mousetraps – snap!

You call for your spouse. No answer. You call a bit louder. No answer. You scream their name as loud as you can, but they can’t hear you over the Monday night football game! At some point, you give up and decide that laying naked in the empty tub, with pain shooting up and down your arms, your feet on fire, that crying is the only thing left to do. The tears flow, with no attempt on your part to control them.

A commercial break prompts your spouse to tap on the door and ask if you’re ok. No you are not ok! “I can’t get out of the bathtub,” you say. “What?” they ask. “I AM STUCK IN THE BATHTUB!” you scream. Your spouse tries the doorknob, and finds it locked. “Just a sec, I’ll get a butter knife to unlock it,” you hear. Wiping the tears from your eyes, you decide to buck up. You hear the door being unlocked from the other side and then a slam as it knocks into the drawer which you left out and is now blocking the door from being able to open.

Sometime later, you are out of the tub after your spouse has wrestled with the door, the drawer, and your wet-noodled legs. You feel ill, too hot and thirsty…you want the fan, ice water, to cool off. Your spouse lovingly abandons his football watching plans to find the fan, bring you ice water, help you dry off…help dress you in your favorite pajamas. He tells you that you need to rest, and suggests if you lay down you’ll feel better. You give in even though you had things you wanted to get done tonight. Maybe a little reading? But you can’t maneuver the book and turn the pages…your hands are both numb and painful. You finally get to the right page, only to fumble the book and it ends up on the floor. Making sure to lay on your left side, because your right shoulder still has an ice pick in it…You. Give. Up. Tomorrow, you think, will be better.

Only it isn’t.

Your legs are not working as they should. You try to get out of bed and collapse on the floor because they will no longer support you. The pain of the clothespins and mousetraps flares again and you find that you now have them running up the backs of your legs, as well. Just sliding your way in a half-crawl down the hall to the bathroom leaves you exhausted. You really don’t have time to care about the rug burns that are now on your knees, because you need to pee. And, in the end, you do not make it to the toilet and find yourself sitting on the hall floor in a puddle that is not the dog’s fault this time. Your spouse is at work and you have to ask your child to come assist you. The humiliation is enough to tow you under, but you put on a brave face and try to make a joke about it, to find something in all this to laugh about.

There is no way for you to get in and out of the tub again to wash off, so you ask for a pile of washcloths and a bowl of water and get to work, slowly. Your child has to clean up the puddle, find clean clothes for you, and do a load of dirty pee-drenched laundry. You are sure you still smell it on yourself. A long crawl back to your room and you decide the floor is just going to have to be where you “are” for today.

After this ordeal, you hope that you can zone out and just survive for awhile, when a zap of electricity shoots through your brain. Your body, quite literally, jolts in reaction. This isn’t part of the clothespins and mousetraps! This is your brain! It happens again. When your body releases the tension and collapses on the floor once more, you realize that someone snuck hot coals under your lower back. Try as you might to remove them, they seem stuck to you and are burning your spine. You cry out in anguish.

This can’t be right, you think. The experiment was only with clothespins and mousetraps! What happened to me? Did I actually faint in the bathtub last night and hit my head? Maybe I should see a doctor, just in case. It takes you 30 minutes to get to the right number in your phone, get it to connect and schedule an appointment. Your appointment is on Thursday afternoon. It’s only Tuesday morning.

Rather than go through each section of the following days, let me just add that by Tuesday night you won’t be able to sleep because now there is an ice pick in your left hip. You also feel like someone shoved a hot curling iron up your wazoo and snapped mousetraps along your “tender areas.” Your arms are weak, sore and barely functioning. You can’t even lift a jug of milk. Your legs vacillate between al dente and so waterlogged they are of no use.

Your spouse takes Thursday afternoon off work to get you to the doctor because you cannot drive, nor can you get from the car to the door of the doctor’s office without assistance. Every movement causes one pin or trap to move and send a new pain. Putting on the seatbelt, your spouse isn’t aware they tapped your shoulder and you try to hide the tears as the ice pick jabs deeper. The hot coals on your back have never cooled. You finally get in with the doctor and begin explaining what has happened this week, and realize that he is looking at you like you’ve grown ten heads. You insist all of it is true and he shakes his head and says, “You look just fine. I don’t see why you’re having such trouble.”

Oh, I forgot to mention…the clothespins, the mousetraps, the ice picks, the coals…they are all invisible. Only you can “see” them, only you can feel them, only you know what is happening with each movement. Your brain begins to realize this wasn’t an experiment, begins to realize that there will be no end to this. That providing endorphins to ‘push through it’ won’t do one bit of good.

There will be no surgery to correct this. No medication will cure it. The most you can be offered is something that *perhaps* will reduce the mousetraps to feel like only clothespins, again. You grasp at it and decide that clothespins are better than mousetraps and you can learn to function in a new way. You forget the person that you were before this past Monday and relegate them to a fond memory which you pull out on occasion for nostalgia…but not too often, because it’s just too painful. A far different kind of pain, but pain nonetheless.

You decide to find things to laugh about, to research potential drugs and supplements which may help. You learn that the myelin coating your nerves is disappearing and the shocks and jolts will only continue to increase over time. You’re making adjustments in life as they are needed; finding tools to help do the things you can no longer do for yourself. Some days there are new mousetraps, new ice picks, new coals. Some days, just getting out of bed to go to the bathroom is all you can manage. There will be no shower, no typing, no phone calls on those days.

Some days you can go outside and enjoy the sunshine, see the blooms on your beloved succulents, watch your dog chase a butterfly. You relish those days and hold onto them during the others. On occasion, you have a really great day: A day when you can ride a few miles in the car without crying out at each bump in the road. You might be able to sit at a quiet restaurant for a few minutes with your spouse and maybe visit a store. You’ll pay for this time, but that’s ok…it’s worth it even if you can’t walk the next day again.

You will endure the comments from the uninformed. How you don’t look like you’re too disabled to work, how *they* don’t take pain meds and never would, that perhaps you just need to exercise more, and why on earth do you have to think about your pain with regard to every move you make. Once in awhile even those who should be informed act just as ignorant and insist that you can’t *really* be unable to work.

You don’t mention the fatigue anymore because far too many people laugh and say, “they get tired too but *they* don’t get to lay in bed all day.” You don’t mention how much it anguishes you when you remember the job you loved and how you wish with all your might that you could do it again. You don’t mention how the neurological damage in your brain makes it so that sometimes you can’t even do grade-school addition.

Sometimes, you’ll smile and nod and pretend those comments aren’t just as hurtful as another mousetrap.  That they don’t sear across your brain like another jolt of electricity passing along the neurons, that they aren’t as harmful as a sudden loss of your ability to walk (again). You don’t mention that emotional stress can be just as damaging to your illness as physical stress. You don’t tell them that their comments are every bit as hurtful as the sharpest pain you feel. You don’t mention the many, MANY other ways that your illness affects you each and every moment of each and every day. That it’s like a tantrum-throwing toddler and all you wish for is that it would collapse on the floor and take a nap and give you a break…for just a few minutes.

Sometimes, you won’t be able to keep the tears back…


For more “In my own words” posts, look here.

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“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2

Posted June 14th, 2014 by

Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member and how she’s learned about the value of sharing the “whys” of her bipolar II.

If you’ve been following along, keep an eye out! We’re going to post the third and final part of her interview in July. Miss the first part? Read that here.

The benefits of spousal support

My husband of thirty-seven years, Jim, is my strongest and most dependable support. We met forty-two years ago teaching high school in New York State. I was the single mother of two boys, four and five, who are Native American and Black on their biological father’s side. Jim was a Catholic priest. The boys soon adopted him as a father figure. We married five years later and moved to Maui. Jim adopted Mike and Mark, and later, we had James and Kalea. Before our marriage, he had already helped me through one suicide attempt.

Over the years, we have always felt we were destined to be together. I can honestly say that in forty-two years, he has never even raised his voice to me. Because of abuse in childhood and my first, brief marriage, I could not have borne it. During our marriage, he has seen me through three other suicide attempts and multiple ECT treatments.

He knows my moods and when they change. During depression, he is my cheerleader, safe harbor and my memory, celebrating the loving, talented person he believes me to be, and reminding me of all my accomplishments. When I am in the pit, he makes certain I know he is with me, but never tries to force an affection frozen within me.

As I worked the last six months to survive without my retiring psychiatrist of thirty-seven years, I have become more aware that Jim is the center of my support and always has been – not my doctor. As this realization grew, our relationship deepened. I thought I knew what a loving marriage was. However, our current relationship is stronger and more beautiful than ever. He is the one person I know who, while having no real experience of being bipolar, knows what to say, how to provide safety and strength, and how to let go when I am able to enter life again.

Support from the members of PatientsLikeMe

After ignoring the other members of PatientsLikeMe for the first few years of membership, I felt compelled to respond when several people commented on my InstantMe daily entries. I had mentioned the difficulty of finding a therapist to replace my retiring psychiatrist, and one member in particular wanted to help me. She lives in a major city and suggested I go to the nearest hospital associated with a medical school where there would be residents available for counseling. I explained here on Maui, we raise pineapples and sugar cane, and most jobs are related to the tourist industry. Hawaii is expensive and lacks mainland amenities such as many doctors from which to choose, support groups for mental health, and large shopping malls (which seem to be a priority for would-be residents).

So Kitty became my sounding board, my comrade-in-arms in the challenging world of bipolar II, and most of all, my friend! I discovered I was often more open to what she had to say than when my doctor said the same thing. Being put together very much like me, she had a perception of a situation I might find perplexing. She cut to the heart of the matter. Once, she suggested a different take on the puzzling behavior of a family member, and after following her advice, the relationship was mended.

She is funny and optimistic despite many problems, and with pretty much daily communication, we manage to keep track of each other’s ups and downs. It raises my damaged self-esteem to be able to encourage Kitty and others. I have learned that friends and family, although well-meaning, are often clueless as to the nature and future of being bipolar. Seeing from PatientsLikeMe members that this is pretty much a constant, I’ve been more at peace and even forgiving toward comments such as, “I’ve tried to help you, but you don’t make any effort,” or “Hasn’t that doctor found the right pill yet?”

Members of PatientsLikeMe also assured me by the tone of some of their entries that I am entitled to lose hope and to want to – and actually do – give up occasionally, and even be quite irritable! None of us are saints. We often feel like the last soldier standing in a curious and never-ending war – and that’s OK!

I could have used their wisdom and comfort years ago, but I’m so grateful I have access to them now. Thank you, staff of PatientsLikeMe, for making that possible.

Using patient charts and InstantMe tools

As for the charts and InstantMe tools, I am making more use of them as time passes. The charts are very helpful – and surprising – since my memory has been seriously impaired by depression. I find myself wondering, “How was it last summer?” and then can go to the charts and see immediately how I felt. Remembering the events of those months, I am often glad to see I handled things well, or sometimes, that I struggled terribly and this struggle accounted for the relationship that fell apart at that time. Seeing and using the daily InstantMe e-mail is a reminder and little push to work again.

Now that I have connections with other people on PatientsLikeMe, I find myself always filling in the comment section on InstantMe, something I originally never did. This is because I now realize the value in sharing the “whys” of my InstantMe selection. I get feedback from others and formulating a reason for my choice helps clarify it in my mind.

Reading past comments of my InstantMe, I’ve been able to spot triggers that appear again and again. I learn what feeling and experiences should be red flags for me. Often having questions or doubts about a medication, it’s so helpful to be able to find out what others have experienced with it. After all, my doctor isn’t taking it. Other members of PatientsLikeMe are!

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I

Posted May 9th, 2014 by

Eleanor and her husband, Jim

 

We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since.

She shared about her journey in a three-part interview series, and we’ll be posting one part each month. In this first edition, Steubenville talked about how twinkling Christmas tree lights gave way to thoughts of loneliness, how life in a convent seemed like the right plan, and how she learned to recognize oncoming depression and mania. Read on for her full interview and keep an eye out for part two in June!


Navigating the ups and downs of a diagnosis

Although I was diagnosed with bipolar II well into adulthood, I feel I experienced it very early in life. On a particularly joyous Christmas Day when I was about twelve, as the dusk fell early on a typical western New York winter afternoon, I stood alone, gazing at the twinkling Christmas tree, and suddenly thought, “This is how it will always be: cold, and dark, and lonely.” This is symbolic of the way I may still cycle during a single day, many times for no apparent reason. At that time, even on happy, fun-filled days, something I may have heard or seen might plunge me into a very dark place and hurl me into a struggle to hold back the tears.

Spiritual highs, melancholic music, lyrics of hymns and the all-encompassing silence of five years in the convent seemed to fit me like a glove. Bouncing from the precious fellowship of the sisters to sad reflection on the passion of Christ seemed normal to me, and I felt I had found the life I’d always craved. Later, when one of my four children whined, I’d reply, “Remember, the world is cold and life is sad,” words I’d often sung as a nun and always felt were such an apt description of life.

Besides the frequent cycling, I’ve experienced other unwelcome features of bipolar such as periods of irresponsible spending and lack of judgment in relationships. So often I found myself standing aside and observing a self who repeatedly cast aside her values and self-pride to pursue an elusive and imaginary gratification.

It took years of therapy and the patience of a saintly psychiatrist for me to begin to understand I had frequent mood shifts caused by mixed up brain circuits – and not existential, undisputable thoughts. First, the universe was amazing, full of possibilities, and anyone who disagreed was to be pitied. Then, suddenly, all roads led to hell. I was totally worthless and no one valued me. I could prove it!

My psychiatrist of thirty-seven years, Jon Betwee, helped me understand that when I was hypomanic, I could not remember depression. When deep depression took over, I was convinced all was lost forever, and the best way to spare others and myself further pain was to die. I tried – four times.

Now, when I see myself feeling a little too “high,” and I think I am funny, have brilliant ideas to share, and life cannot move fast enough, I tally these signs as being hypomanic and put the brakes on. No, I am not happiness and wisdom personified. I put in place some deep breathing, a quiet time of reading, or long conversations with my supportive, knowledgeable husband. Triggers can be too hectic or too frequent and demanding. Eliminating some social gatherings and frenetic activity helps.

I now recognize the approach of depression when I re-play sad and tragic DVDs, cry over everything or imagine hidden and antagonistic messages beneath the conversation of family and friends. Triggers may be letting myself get very fatigued, ruminating about past hurts, making mental lists of all my mistakes and weaknesses. Now I make myself get up, start a task that will absorb and re-direct my attention, and review “What would Jon suggest I do?”

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