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.

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.

Allies

I am a person living with chronic and mental illnesses. I didn’t plan this, and I often don’t know how to manage this lifestyle. I research things a lot, and I cry a lot more. I also make dua.

When my mom was living, I had a sounding board and a confidante. I also had a friend. My mom guided me through my life and helped me parent with mental illness. Now I turn to my father and sometimes my friends. I also lean heavily on my mentors for support.

To me, an ally is someone who cares and is there for you throughout your life. They are someone who can help you handle your feelings and your situation. An ally is a person who steps in and asks what they can do to help. They are someone who notices a problem and decides to pitch in.

When you are an ally, you don’t pick that title for yourself. It’s a role and an unspoken relationship between you and another person/community. It’s learniny how to hold space for someone and their feelings. It’s not centering yourself, while at the same time, making sure not to diminish your own needs and such. Being an ally is challenging because while you are a helper, you have to know how to be emotionally sound and develop proper boundaries.

You have to know when to step in and when to step back. You have to know how to ask people what they need and how to listen. Being an ally is about active and passive listening skills. You also have to forgive yourself in the beginning and throughout, for the times you will and do make mistakes.

As a person who needs allies, I am learning to ask for help and to forgive myself for my own mistakes. This is a work in progress but I’m happy to be on the road to wellness with good friends, and true allies.

Life Plan For Mental Illness

 

Life Plan for Muslims Living with Mental Illness

Purpose
To illustrate how a person living with mental illness in a Muslim community (or any marginalized area) can safely and happily share their life with others

Who Should Make a Life Plan
Anyone who wants to share their lives with loved ones and feels comfortable adding them to their support team. A person who has a mental health diagnosis and wants to inform people how to address any concerns or questions about their health and safety, should an emergency arise (how to get the individual to their doctor and such). Someone who feels comfortable sharing emergency contacts and wants to teach others about their mental illness.

Who Should Be Involved
The individual who has been diagnosed should make this plan with their diagnosing psychiatrist. That way, the patient and doctor can discuss the person’s needs as far as their physical environment, support system, transportation, religious and psychosocial development, educational counseling, financial needs and so forth. Once developed, the person may share this plan with whom they wish. But as it is now part of their formal diagnosis and medical record, it cannot be altered or commented on by a layperson. And should not be tampered with. The purpose of the life plan is to augment the support system and make their job of helping the patient heal easier and more cohesive. It also helps the patient communicate with their doctor during check ups and any emergency visits.

When to Communicate Needs (Patient)
When the person notices their quality of living standards are reducing to the degree that they cannot handle day to day tasks and it is interfering with their quality of life. As an example, if a person isn’t able to attend to daily hygiene needs and if this is harming their standard of living, they may want to reach out and tell a friend they are in need of extra attention. Note: this isn’t cause for alarm right away or a call for action. Their prescribing doctor is the only one who can diagnose any new symptoms and understand the situation. Communication helps those around the person know that things are happening and to be more empathetic at this time. For the Muslim friend or neighbor, this is a great time to make dua and ask for relief of hardships for the person, nothing more. They must refrain from offering unsolicited advice, piling on extra household chores, parental duties, etc, and make a concerted effort not to add to the person’s overall hardships. In general, stress and pressure exacerbate mental health conditions and make recovery much harder. Stress also makes living conditions more tense. A person may feel shy to tell their friends and family members this and can ask for help with communication from a physician or social worker.

Always remember, reliving a sick person’s difficulties can bring many blessings inshaAllah.
It was narrated from Abu Hurairah:
“The Messenger of Allah said: ‘Whoever relieves a Muslim of some worldly distress, Allah will relieve him of some of the distress of the Day of Resurrection, and whoever conceals (the faults of) a Muslim, Allah will conceal him (his faults) in this world and the Day of Resurrection. And whoever relives the burden from a destitute person, Allah will relieve him in this world and the next. Allah will help His slave so long as His slave helps his brother. Whoever follows a path in pursuit of knowledge, Allah will make easy fro him a path to paradise. No people gather in one of the houses of Allah, reciting the Book of Allah and teaching it to one another, but the angels will surround them, tranquility will descend upon them, mercy will envelop them and Allah will mention them to those who are with Him. And whoever is hindered because of his bad deeds, his lineage will be of no avail to him.'”

When to Communicate Concerns (Support team/living partners or roommates)
If you are living with a mentally ill person or know someone with a diagnosis and become concerned about their symptoms, you may not know how to approach the topic. First, as long as the person has a regular doctor and/or therapist in their life, know that you are in no way responsible for their medical care. Your empathy can be best used by following Quran and Sunnah and not panicking. If you notice a change and are worried for someone’s safety, don’t be afraid to talk about things directly. Asking about suicide and suicidal thoughts does not induce suicidal behaviors or ideations.

An ice breaker may be “hey, I notice you’ve been withdrawn lately, do you mind if we talk?” or “Can we talk later? I’m worried about you. Are you alright? You seem upset. Would you like to talk?” “Is there anything you’d like to discuss? How can I make things easier for you?” “I really don’t know what to say but I want you to know I’m here for you and I support you.” “Please tell me how you’d like me to talk to you about your mental health symptoms. I don’t want to seem dismissive when I don’t know what to say.”
HIPPA
As someone’s friend, neighbor, roommate or family member, you may not talk about their mental illness or diagnosis with others. Even if the person discloses their diagnosis publicly. They are allowed to decide what they want to publicize however gossip rules still apply and it is best to leave sensitive subjects to the professionals. If you overhear someone crying on the phone, laughing with fiends late at night, talking about their inpatient experiences, describing uncomfortable symptoms, talking about their most and least favorite physicians or simply having an episode that a doctor has to handle, please let the professionals do their job and do not violate their personal space. Often times, this is how disagreements happen and feelings get hurt because lines are crossed that need not be. The saying that “too many cooks spoil the pot” applies to this situation. Please use best practices and do not violate someone’s privacy, which in turn will keep everyone safe.

Online
Many Muslims with mental health issues are visible online. Some are mental health advocates as well. If you see someone who has chosen to be an advocate for mental health online and they have specified their particular area of interest, please reach out to them directly and make contact. Get to know them. Get a business card. Give them the respect that you give other advocates and activists. DM them and give them the Islamic Greetings as you would any other Muslim advocate. Offer direct advice and sincere Islamic naseehah when they make a mistake, from the Quran and the Sunnah. With love and sincerity. If you have questions about where they’ve studied, ask them kindly, and not to poke holes in their life and ruin their mental health even further. Help them heal Islamically and spiritually and don’t step over their doctors who have worked hard to put their minds back together. With this, Insha’Allah, the community can come together and learn much more about the topic of mental health and those of us living with mental illness can feel safe and accepted.

 

 

 

 

 

 

 

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.

Vulnerability

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I was feeling vulnerable. I was feeling less than pretty. I was feeling old and worn, discarded by society somehow. I needed validation in that moment. I needed acceptance and maybe a bit of ego stroking. I’m human too, after all. But I was rebuffed. I was brushed aside like my feelings don’t even matter. That really hurt. I didn’t say anything though. I never do in those situations. I don’t feel comfortable expressing when I’m feeling like I need more from people. I’m embarrassed to be so complicated. And it hurts that being ignored makes me feel so deeply wounded and unaccepted. I hate this about myself. It makes me feel so exposed and raw. So easily able to be dragged over the coals of indifference at a moments notice. So I just sat there, in the dark, in my house. And pretended everything was fine. I laughed and joked like I wasn’t dying inside. As if I didn’t want to retreat to my inner most feelings cave and never come out. I willed myself not to simply disappear. I’m still fighting the urge. Part of me wants to write and get my feelings out, and part of me wants to run and hide in a dark corner where no one can ever find me. I want to hide in shame because I hate that I need validation from others at times. I desperately want this to change. And quickly so I never have to feel this way again. So I’m never having to force myself not to walk away from the world when I don’t get what I need. Being vulnerable like this feels like a curse.

Loneliness, Addiction and Lack of connection

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People say the opposite of addiction is connection. I struggle with loneliness and a feeling of not being connected a lot of the time. I also have what is known as an addictive personality. So it doesn’t come as a surprise to me that I would have developed addiction issues and alcohol dependence at a point during my life. I talk about my mental health issues every day both online and in real life. But my emotional issues I don’t address as often. I believe those issues are at the root of why I struggled with addiction when I did. And why I have an addictive personality in general. It’s why I have such a deep feeling of loneliness even when I’m in a crowded room, and why even though I have such a tight-knit, loving family, I often feel starved for attention.

I remember times back when I was deeply entrenched in my alcohol dependence or stimulant addiction. I used because I was so very lonely and sad. I reached for the bottle and/or pills back then to stave off those feelings of soul crushing loneliness. I often drank or used when I was alone. That’s the thing about my addiction. I wasn’t as much a social user as I was a lonely user. That makes me sad when I think about it; even though I’m better now. I’m sad for that person and for who she was. And even when I partied with other people, I used to excess. I drank to a point of alcohol poisoning many times in my life. I’m not proud of that. And I used pills to a point where I was scared my heart would stop or I’d have a stroke. Repeatedly. But that didn’t stop me from using. I kept doing it over and over again, for many years. I needed to numb my pain. I still do in fact. I always will, I just have found healthy outlets for my needs. And I have learned how to control my appetite for those feelings. But it hasn’t been easy.

I spend time with my friends when I can, and I talk about my feelings with those who understand. Though that is a slippery slope in and of itself. Talking about addiction too much can make me want to use again, so I have to be careful. Being around people who use or used to is hard. Because I never know how well they are and if they will backslide. And I’m always one slip away from falling into addiction again. Alcohol was easy for me to overcome. I could fall back on my religion for help with my drinking habits. There was simply no justification for me to drink anymore and I really didn’t need it; even when I was manic. So I quit cold turkey. But the pills were much harder. I absolutely needed them for my medical condition of excessive daytime sleepiness and adhd. If I don’t take them I fall into an almost narcoleptic like sleep. It happens in the spring mostly but also it’s a function of my bipolar and depression issues. So I almost can’t escape using stimulants. My neurologist practically insists on me taking them, even though he knows I have bipolar disorder. So I have had to muscle through my addiction with them. Thankfully, I overcame it, mostly on my own. I’m proud and grateful for the work I’ve done, knowing that it came easier to me than for a lot of people. For that, I give thanks to Allah and I say many prayers of gratitude.

My loneliness comes and goes. But as I make more friends, I notice I feel more connected and less alone in the world. I think a part of me will always be lonely. That’s the little girl in me that just feels sad no matter what. I accept that. It’s just a part of who I am. Writing this has helped. And meeting new people online everyday has also been a blessing. I do believe that the opposite of addiction is connection. I am working hard at staying connected and staying addiction-free for the rest of my life. As I said the other day, I love my life now. I intend to keep it that way.

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