DID

I raced to call my psychiatrist when I saw this:

Heading – 46/112. Your dissociative identity disorder test result, dot dot dot.

Your result is high risk.

Your results are highly consistent with dissociative identity disorder.

This wasn’t surprising at all and in fact it was a relief. At first. This is my coming out story. I, Karen Michelle Kaiser, have DID.

It’s a result of c-ptsd, and I’ve had it since childhood. Thank you in advance for listening.

I’m nervous to talk about this topic because I don’t know anything about it. I do remember that I used to dissociate when I was a child. I’d daydream for hours on end and get stuck in my head. I couldn’t get out. By the end of the day, I’d have spent hours dreaming up imaginary scenarios and I didn’t know where the time went. It felt like a hypnagogic hallucination that I couldn’t escape from. There were bright colors and strange sounds. It happened on a daily basis.

I could dissociate like this no matter where I was or what I was doing. Sometimes I didn’t know what was real and what wasn’t. I’d have to pull myself out of the scenarios and force myself to stay in the present. It was often a chore. Even now I can separate my psyche like this if I want to.

There are three distinct people that makeup who I am, I’ve come to realize. Karen, Sakinah and Michelle.

Karen

Karen is the person who I was born as. She is who went to church and sang in the choir. Karen played the piano and studied ballet, tap and jazz. Karen was a swimmer and a lifeguard. Karen tells people what to do. She is a teetotaler and a teacher. She is a black and white thinker. She can’t accept mistakes. She is a consummate perfectionist. She is the ultimate establishment “Karen”…

Michelle

Michelle is who I always wanted to be. I remember being 10 years old and thinking to myself that I’d prefer to be called by a prettier, softer name. I liked my middle name better than “Karen”. In my mind, I became Michelle. It was a Black name. I saw myself as Michelle from then on…

Sakinah

Sakinah is the Muslim me. She is god inspired peace and tranquillity. She came into existence formally at the age of 21 but informally at the age of nine. Or so. I’ve always been Sakinah. I’ve always had a sense of tranquility about me and this name suits me so people might say. I’m bubbly and easygoing. Slow to anger (before the mental illness) Sakinah is the main me…

People ask me what name I prefer to be called and I’m always confused. Now I know why. I can use Karen or Sakinah per my did issue. I prefer Sakinah because I’m trying to integrate these personalities. But any name will do. This is new territory for me so please be patient

And please be prepared for me to mess up sometimes. Thank you 🙏🏽

UPDATE…

DID II

What’s in a name?

Karen

This is the name my father gave me. I’m proud of it and it means pure. I didn’t know any Black Karen’s growing up and I didn’t have a sense of self because of the DID symptoms. My brain made me feel worthless about this name however, and my body followed suit. When people teased me and said I wasn’t “something” enough, I equated that with my first name. My psyche split and I became “Michelle” until I was comfortable with “Karen”.

Michelle

She is pretty. She is confident. She is gregarious. She is hypomanic, happy and grandiose. Michelle can do anything she sets her mind to. She is given to psychosis…

Sakinah

She is moderate and even tempered. She has and sets limits. She is bipolar and willing to take her meds. She enjoys sobriety and stability.

Narcolepsy

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I feel like I just can’t wake up. I’ve been sleeping for 3-4 days on and off and it isn’t helping. My moods are stable, so I’m sure this isn’t bipolar depression. I actually feel pretty happy.

When it gets like this, my anxiety ramps up. Not because I’m sad about things, but because I’m anxious about my sleep. My dr tells me to take 2-3 naps per day. But at times like this, I’m sure I’d take 5 if the daytime hours allowed it. I feel like I could sleep forever.

I’ve tried everything. Coffee, soda, tea, meditation, etc. So far, those have had minimal to no effect. It feels like I’m being pulled under, underneath a wave of covers, or water. I can’t breathe and I’m drowning in tiredness. This feeling is so uncomfortable.

My narcolepsy comes with excessive daytime sleepiness, sudden sleep attacks, and prolonged lethargy. No matter what I do, these symptoms are ever present. These days, my narcolepsy isn’t well controlled. It reminds me of when I was in high school and college. My mom used to prevent me from going to my room before 8pm. Little did we know, she was working on my sleep hygiene. This still didn’t help. Much like my current situation. Regardless of what I do at night, I wake up feeling ambushed and exhausted.

I’m working on sleeping with ambient noise to see if that helps. Too much light keeps me awake and too much noise makes me agitated. It’s a balancing act to get the right environment for my rest. This is an extreme sport almost. Only, I’m not enjoying participating.

Narcolepsy robs me of so much. My energy is sapped, my mind is fogged, and my limbs are heavy. It’s a struggle for me to even take a walk around the block. If I’m not careful, I can slip into a mixed state or even psychotic depression because of my sleep issues. This is a major predicament.

One thing that does help is communication with my support system and letting people know when I’m overly tired. I may ask for nutritional advice or even just company so that I don’t sleep all day. Occasionally I’ll have to ask people to help me get sleep, but that’s when the urge to rest is overwhelming. Lately, I’ve had to do this. And it makes me sad.

I never wonder why this happened to me, but I do want to know how to address it. I feel like I’m missing out on life by sleeping this much. I’m missing my kids, and my friends and family too.

Another thing that may work is getting a nutritionist or a registered dietitian for my eating disorders. That way, I’m supporting my body with wellness and not illness.

I feel much better sitting up. But these days I’m horizontal more than vertical. I wish, per my body, to sleep 24/7. But I know that doesn’t make things better. The last few days, I’ve forced myself to go outside. I made myself walk to the end of the street and back. It didn’t stop the narcolepsy attacks but I did feel more focused and alert. At least for a short period of time.

In college, I didn’t have the words to tell people I was struggling. So I suffered and lost many opportunities. Now I’m glad I can tell people how I feel. And I’m grateful that they understand my issues. No longer do I feel ostracized or embarrassed. I know that if I need it, people are there to help me through this. It’s been a long road but I’m happy to be moving forward. And I’m happy to be getting the assistance I need with this challenging situation.

Allah is merciful. Time can make this better. And what a ride it’s been.

Taking Psych Meds as Prescribed

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I don’t think I’ve ever really taken medicine from the pharmacy the way it was intended. I know I never read the package inserts. Or I rarely do so, I should say. Recently I had a chance to attend the Maryland DUR (drug utilization review) board meeting held virtually in my area. It was eye opening re: pharmacy procedures and protocols, and also alerted me to what I didn’t notice about my own pharmaceutical issues.

When you get a prescription filled, there’s typically a ton of paperwork involved. You may have a paper script from your dr., you’ll need to fill out intake forms at the pharmacy when it’s your first time there, and you have to wade through lengthy insurance processes to get certain medications authorized. The last thing you want to do is read anymore papers or research how to take your meds properly.

When I’m given my medication bottles, I tend to throw away the package inserts and only handle the physical bottles. What I didn’t realize is that by doing this, I was missing vital information about how to take my pills. Additionally, without a regular consult from my prescribing physicians or the pharmacist, it’s been hard for me to recognize the importance of label reading/following the directions.

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Lately I’d been noticing a recurrence in my bipolar symptoms. And I also saw an increase in other negative behaviors associated with my chronic health conditions. It was concerning to me and my support team. Then I realized that part of the problem is how I’m taking my medicine, and my adherence, or lack thereof, to the strict guidelines given with each medication.

So, I pulled out all my pill bottles and decided to read the labels. Boy was it enlightening. Take, for example, Ritalin or methylphenidate. On the back of my bottle it reads, “take this medicine 1/2 to 1 hour before meals.” And, “Check with your doctor or pharmacist to make sure it is safe for you to take this drug with all of your other drugs.” I never knew I was supposed to do this.

With my buspirone, the front of the bottle says, “take 1 tablet by mouth 2 times per day.” And on the side of the bottle there’s a table that indicates I should take one tablet in the morning and one in the evening. Until this morning, I’d never seen that part of the medication label. I’d never put together what two times per day meant. After reviewing all of my medicines, I knew that my symptom issues largely had to do with incomplete compliance with directions.

Part of me is annoyed that it took this long for me to figure this out. And part of me knows that this is a better late than never situation. Had I not attended the DUR meeting, I wouldn’t have thought about reviewing my medication history and going through my supplies. Sometimes it takes an event outside of your control to help get you back on track. In my case, it was an educational event I attended for the purposes of my advocacy work. So this turned out to be a blessing in disguise.

Rumination: My Brain on Love After Divorce

To feel like you’ll never be in love again (even though it’s not necessarily true) is a crushing feeling. It’s an intrusive thought. It’s your OCD ruining things. It’s rumination trying to take over where you paroxetine leaves off.

At night, when I’m at my loneliest, my brain tells me I’m unworthy of romantic love. It taunts me and says I’m ugly, fat, undesirable, etc. I try to ignore these cruel and unrelenting thoughts, but it isn’t easy. The silence is even worse. It’s so deafening. I have to press my hands to my ears to block out the sounds of the voices telling me I’ll never get another chance at warmth and happiness. Sometimes I make counter noises and sing loudly, just to drown out the negative stuff. I want to talk back to the voices. I want to tell them I’m a good person.

My intrusive thoughts keep me up at night. Though it’s gotten much better, I still struggle with the feeling that I won’t feel love ever again. I have doubts about my current reality. Does anyone care about me? Do people know I’m alive? Will I die alone? Am I loved by Allah and His creation? Have I slipped into obscurity? What if I never meet The One?

If you’ve always lived with your significant other then these intrusive thoughts will seem foreign to you. OCD itself will seem like something ‘other’ as well. It’s hard to imagine the loneliness of living by oneself with psychosis and psychological trauma. With disorders that rob you of your sanity.

When you add loss of love to the mix, it gets even more complicated. I try to remain upbeat and keep myself occupied. I tell myself that whatever happens, I’ll be alright.

I’ve learned how to weather the loneliness at night and how to keep my brain occupied even when I sleep. And my medications are working better these days, thankfully. Will I ever find romantic love again is a question for God, and not for me. But I’m anxiously awaiting the answer. Until then, I sit in silence in the dark and tackle my rumination alone.

Getting Med Refills Each Month as a Disabled Person

As a patient living with multiple chronic, mental and physical illnesses, it can be a challenge to receive your medication on time each month. One issue faced by people is how the doctor chooses to fill the prescription; monthly or every 90 days. Each option means you have to keep track of your meds and remember when you last filled them so you can keep up with the script schedule.

Another issue you may face is wait times at the pharmacy. Due to covid and distancing procedures, getting your meds can take twice as long as it did in the past. And even calling your pharmacy on the phone can be a daunting task. Pharmacy staff is often overwhelmed by customers in person and on phone lines which causes everyone to wait longer. It’s understandable, but frustrating.

Some doctors choose to e-file your scripts while others still rely on giving patients hard copies of their hand written prescriptions. This causes more lag time for patients and ultimately ends up in longer wait times at the pharmacy. The goal should be to minimize stress for those who are already dealing with a lot, not to bog them down in minutiae and red tape.

Those patients who take multiple medications often need pill minders and med calendars to help monitor their monthly intake of medicines. Otherwise it can get confusing as to what they’ve taken and when. One tip given by a local pharmacist is to keep your empty pill bottles each month (in a safe case) so you have the dates when last filled and any necessary med information needed in order to remind yourself when to next fill the scripts.

Do you have challenges filling your meds each month? You can always ask questions, at the pharmacy, at your doctor’s office, and whenever you feel you need more information. Getting your medicine shouldn’t be confusing. It should be a smooth process and one which facilitates part of your medical care.

Bipolar and Menopause, UPDATE

I’m on my millionth night of little to no sleep, and I just started singing to myself, “this manic moment…” to the tune of Ben E King and The Drifters’ iconic song. It’s the middle of summer, and my mania seems everlasting. What began as hypomania in the middle of the spring, has turned into full blown mania that won’t quit.

Usually, I can get a handle on things and the hypomania dies down long before this point. But this time its spinning out of control and I can’t seem to get my meds in synch with my moods. It’s frustrating.

Adding to the confusion is the onset of menopause and my thyroid disorder. I have a nodule which is wreaking havoc with my mental and physical health. The thyroid nodule is increasing my night sweats, anxiety, irritation and hyperactivity. And so is the change of life. It’s like a double dose of hormones and agitation thrown at me all at once. I feel like I can’t cope.

My brain is going haywire. Sometimes I’m not sure which emotion to use for a scenario or which facial expression. I notice myself singing a lot more, loudly, and laughing at inappropriate times. This is all troubling.

So what to do about this dilemma? Well, I’ve made an appointment with a new therapist and I have a new sleep doctor and neurologist as well. I will be discussing these issues with those specialists and asking for their guidance. I also need to work on my sleep hygiene and diet. But for that, I need to the help of a nutritionist or dietitian. My eating disorder has also been affected by these illnesses.

I’m not daunted by everything that’s happening but I am appropriately concerned. But as long as I keep in touch with my doctors and have a solid support system, things should work out just fine.

Bipolar Disorder and Menopause

I’ve had bipolar disorder for as long as I can remember. But only recently did I start experiencing the symptoms of menopause; early menopause, in fact. I’m learning how to manage the two together, and let me tell you, it isn’t easy.

Bipolar is an illness which makes it harder for you to tolerate stress. And also stress brings on the symptoms of bipolar disorder. It’s such a conundrum. Being menopausal is a stressful situation. Your body is changing, you are experiencing fluctuating hormones and moods, and you’re having hot flashes.

All of this can make you susceptible to a manic, depressive or mixed episode, which you have to address in addition to the menopause symptoms. It’s one of the hardest things I’ve ever had to do.

One thing that’s helping me is to chart my symptoms and notice which condition they correspond to. I note my meds and how I’m taking them and also my sleep patterns. It’s a lot of work. The things that have changed the most are my appetite and my sleep. I’m either ravenous or not interested in eating at all. And I’m not sleeping well.

Menopause keeps me tossing and turning all night long. This is disastrous for me because for me because it’s adding to my anxiety and mania. I can’t seem to get a handle on the elevated moods because I can’t sleep. Sometimes I’ll go two days without resting. I’m both exhausted and wired.

What I’ve decided to do is roll with the punches and not fight my body. It’s tempting to try and actively manage this, however I’m willing myself to just relax. It’s similar to what I do with my ocd and intrusive thoughts. In the same way I don’t fight against my ruminating brain, I don’t force myself into recovery mode. Slowly, things are easing up, and lately I’ve been able to catch a few naps here and there.

Meditation is another coping skill I’m learning to use. I’m checking in with myself more often and learning how to access mindfulness techniques. This helps me to sit with confusing feelings and negative ideas. I notice this is effective for my suicidal ideation too. Ideation which is seeming to subside these days.

One positive thing about experiencing menopause at 46 is that I feel more confident and sure of myself. I’m used to weathering my ever changing brain, and somehow adding aging issues to the mix makes me feel more empowered. I believe it’s because I’m doing this as a single parent. I’m realizing how capable I truly am.

Bipolar and menopause are a fiery mix. Though things are up and down with my moods, overall, this challenge has been a great learning experience. I wouldn’t change anything, well, except for getting more sleep. But I guess we could all use that.

Recovery from gaslighting and emotional abuse

I never believe anything anyone says anymore. To me everything is a lie or a trick. It’s at my expense. This is what my brain tells me every day. “They hate you!” “This is just like last time!?” “Remember you fell for this before” “That couldn’t be true”…

It’s exhausting. Sometimes I find myself talking out loud to the negativity. “Don’t listen!” “You’re a good person” “La la la la” the last one said with my fingers shoved in my ears.

Yes Eventually this becomes a self fulfilling prophecy. If you react to negativity in a strange way, people will indeed hate you. So my paranoia seems to be justified.

I don’t remember a time when I wasn’t like this. On edge, hypervigilant, irritated, and waiting for the other shoe to drop. But I can’t take much more of the tension, I need a healthier way to deal with brain stress.

So far, I’ve only identified the problem: gaslighting and trauma. Emotional abuse as well. But I haven’t started healing yet because I don’t know where to begin. I don’t know how to let down my guard and trust people.

I’ve decided I don’t want to be reactive any longer because it’s so harmful. I think the best way to create new habits is to create a ptsd plan for emergencies. Once a dr told me to make note cards with sample responses to my stressors. And to keep them with me at all times as a reminder.

I’m realizing I can do this and feel empowered. This removes the fear factor in my mind. I don’t even have to take the cards out and look at them. Just knowing I have a plan and that I’m not unprepared makes me feel better.

The only way I’ll be able to trust again is to try. I have to step out on faith and hope for the best. Healing from emotional abuse takes work and time. I’m willing to put in both to make things better.

What Life is Like on Disability

The reality is it isn’t easy. By the time you’re actually approved for disability you’re usually destitute. There’s no other way to put it. Even if you get a large sum of back pay, you’ve exhausted your savings and built up so many medical bills and other expenses that by the time you see your check, it’s all but spent. Don’t get me wrong, I’m extremely grateful to be able to sustain myself with what I receive from social security. And to know that I can also write on the side and teach students in my spare time to keep myself busy when I’m feeling up to it makes me happy. But none of these things create a windfall for me. I’m scraping by every month and barely surviving. If it weren’t for my mosque supporting me with zakat (charity), and help from my ex-husband occasionally, I wouldn’t make it. The thing is I used to have money. When I was married, things were fine. Better than fine, actually. But getting sick ruined my finances. And I haven’t been able to get myself together ever since. It’s like I’m treading water every month. I’ve often mentioned my issues with eating and my disordered patterns, but frankly, sometimes I just don’t have the money for groceries. So I don’t eat, simple as that. Everybody I know on disability is in a similar position. No matter how much they receive. They all tell me that their initial savings went quickly and they have trouble managing on what they receive each month. It’s really challenging. But nevertheless, I am still grateful for the fact that I have health insurance and some semblance of a paycheck. Things will get better. They always do. And my writing has already been helping me so much lately. So I can’t complain. I just wish more people were understanding of my situation. It’s hard struggling in silence. I feel like I’m alone in what I’m going through, until I remember those dealing with the same situation. That helps me not dwell on my problems and feel so sad. I’m eagerly awaiting the day when I don’t have to decide between paying a bill and buying a meal for the day. Then I’ll be able to focus solely on my emotional and mental well-being, and spending more time with my kids. It’s coming, I can feel it… 🙂

Disability and Mental Illness

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I began thinking about applying for disability in 2012. I had lost my job after a bad manic episode. At that time my mom was battling inflammatory breast cancer as well, and my children had just returned from a four year stay in Senegal with their father’s family. Stressed out doesn’t even come close to my mental state at the time. I simply couldn’t work under those conditions. I couldn’t even get off my couch or take care of myself in any capacity. I had no concept of functional self-care in any sense and I was barely lucid. After my mom passed away in early 2013, I became completely unstable. I went into a psychotic depression, sleeping off and on for several months. I was paranoid and delusional. I lashed out at those around me, accusing them of the worst things imaginable. My behavior was almost unrecognizable, and yet no one suggested I go to the hospital or even to my psychiatrist to get evaluated. They just lectured me to get myself together and stop acting out. Days merged into nights and I never knew what time it was or even the month. I developed bronchitis and then pneumonia but I still never left my house. I was too psychologically unwell. My primary care doctor was able to get antibiotics to my house as she knew I’d never make it to the emergency room for treatment.

At some point that winter, I finally decided to contact an attorney to help me file the paperwork for my disability claim because I knew I couldn’t complete it on my own. I remember telling the clerk I felt so poorly that if someone offered me a salary to simply staple papers all day, I’d have to decline because I didn’t have the energy to operate the stapler. I just couldn’t do anything productive. Even breathing was painful. I wanted to die. It took me 2 long years before I was able to get a hearing with a disability judge. My case was denied twice before that time. It was decided that I was sick, but not sick enough for disability. So I wanted to plead my case in front of a judge to see what would happen. On the day of my hearing, I was extremely nervous. Someone offered me a ride to the courthouse, because by this time I had stopped driving. I didn’t live on my own anymore either; I was staying with a family friend until I got back on my feet. Losing my mom took everything out of me. I was a shell of a person. Going to the courthouse was scarier than I thought it would be. My social anxiety was raging that day.

When it was my turn to go into the courtroom, my knees turned to jelly. I thought I was going to be sick. My attorney escorted me into the large room and showed me to the table where I would sit for the next hour. There were several people in the room already: The judge, the court reporter, a spectator/another disability lawyer, someone reviewing my case, and then my attorney. It was overwhelming and frightening. I felt like I was on display and I immediately wanted to run from the room screaming. But I couldn’t. I felt trapped. I sat at the table and shakily poured myself a glass of water. But I was too nervous to drink it. My attorney sat at an adjacent table. The judge introduced herself and explained why we were all there. She tried to put me at ease but it only made my anxiety worse. She asked me to begin telling my story and explain how I had come to be hampered by my mental illness. She wanted me to recount what had gone on for the last two years. But what scared me was that she had my medical records in front of her. How could I possibly remember all of that? I started talking and began stuttering right away. I do that when I’m nervous. Everybody in the room looked at me, puzzled. That made me more anxious and I continued stammering. I couldn’t stop. It was hard for me to put together a coherent sentence. My attorney looked so confused. Just a few minutes ago I was speaking clearly and without stuttering. I could tell she didn’t know what had happened and if I was faking my stutter. I was so embarrassed, but I had to keep talking. It was excruciating. My face was so hot, I thought it would explode. It felt like I was talking for hours.  When I was done, the judge asked me a bunch of questions. I felt defensive and angry. If my medical history was right there, why was I being cross examined? It made me feel like a criminal. I was sad and humiliated. Everybody in the room could hear my most personal medical details; the worst parts of my disorder and what it had done to me. I’ve never been so ashamed in my life. I knew the judge wasn’t trying to hurt me and yet I felt demoralized by her pointed questions. All this in order to determine if my mental illness was in fact debilitating and disabling. This wasn’t fun at all. When it was finally over, she concluded that my medical records supported what I had testified to and that she would make a ruling in about 6 weeks. My attorney said that was a positive sign that things had gone in our favor.

In the end, I was declared fully disabled and entitled to benefits. But the point of my story is that when I hear people speak disparagingly about those receiving help from the state, it traumatizes me all over again. That was one of the worst experiences of my life. It was bad enough to have to live like that for those years. In a fog of complete mental instability and confusion. But then to have to recount it in a room full of people as though I was on trial was something that hurt in a way I can’t explain. I don’t mind being disabled by my mental illness. But when I think about that day, I hate my disorder and what it’s done to my life. I hate that I had to tell a group of people about my illness in that way because it isn’t readily visible and obvious. That’s what hurts and shames me. And that’s what I resent about the disability process.

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