Parents of Children With Disabilities Can Use this Self-Care Guide When Battling Fatigue

Today’s guest blogger is Charlene Roth. She blogs at https://safehappyhouses.com/

The article is shared below:

Being the parent of a child with a disability can be both rewarding, and it can also be mentally and physically exhausting. That’s why it’s so important to take time for yourself and establish a self-care plan to manage the fatigue that comes from your caregiving duties. Whether you need to seek support from friends and family or work on identifying stress triggers, there are several things you can do to feel better. The Muslim Hippie shares a few:

Identify The Causes of Your Fatigue

The first step in establishing a self-care plan is to identify what triggers your fatigue. This could include things like lack of sleep or too much stress. Once you have identified these triggers, it will be easier to create strategies that help you manage them. Ask yourself a few key questions, such as:

● How well do you sleep each night?

● How much social support do you have?

● How would you rate your parenting effectiveness?

Create Realistic Self-Care Strategies

Once you have identified the triggers of your fatigue, it is important to utilize self-care strategies to combat them. This could include things like getting enough sleep, eating healthy foods, exercising regularly, and taking time off work to recharge. Additionally, consider attending therapy or support groups if needed so that you can talk about any issues or concerns that may come up while caring for your child.

Keep in mind that some self-care strategies will work better than others, and that no two people are alike when it comes to finding ways to relieve mental fatigue. Weigh the pros and cons before creating a plan, and keep it realistic. For instance, taking time off work might allow you to relax and relieve stress while you focus on your family, but it might put a strain on your budget.

Seek Professional Assistance

Sometimes it is necessary to seek professional assistance when dealing with caregiver fatigue. Consider talking to your doctor about any medical issues that may be causing your fatigue or seek out counseling services if needed. Additionally, look into respite care options so that you can take breaks from your caregiving duties while ensuring that your child is in good hands.

Set Some Goals For Yourself

Caring for a child with special needs can be exhausting, but it doesn’t mean that you have to put all of your personal goals on hold forever. Consider setting realistic goals like going back to school or changing jobs so that you can have more flexible hours. You can use resume builders online and make sure that your application stands out among the rest when applying for jobs.

You might even consider becoming an entrepreneur by creating a solid business plan for your idea. Be sure to include a business entity in your plan, such as an LLC. This entity can provide protection for your assets while keeping them separate from your professional finances. An online formation service can help you get set up.

Caring for a child with a disability can be extremely challenging, especially if you also work. By looking for support from friends, loved ones, and other caregivers, you can take care of your mental and physical health while ensuring that your child has everything they need. Don’t forget to take care of your goals, such as finding a rewarding job or starting your own business, as this is a great way to build your confidence and focus on your needs.

March 9, 2023 0

New Focus

(CW//Weight. Scale. Weight loss.)

I’ve embarked on a new health and fitness journey in the last week. Lately when I looked in the mirror, I didn’t like what I saw at all. It’s not just that my weight has been an issue but I looked tired, stressed, worn out, older than I actually am and just generally blah.

I didn’t look happy. And I hated this for myself. So I sat down and took a hard look at what’s gotten me here: life issues, strife, mental health challenges, medications, thyroid problems, menopause…. Arghhh. I just screamed internally. It doesn’t matter how I got here, but I’m mad and I’m going to do something about it. This is what I thought to myself to stop from spiraling.

I decided to do something for myself as a pick me up and to revamp my life. So I’m embarking on a personal weight loss journey. I wanted to make it a whole endeavor since I knew this would be a big undertaking. I bought myself a scale, made a video introducing my new direction and set off.

The big reveal: I have 132-137 pounds to lose in order to get to the weight my dr suggested. It’s going to take discipline, determination and hard work but I can do it. I’m tackling this issue much like I did sports. I’m digging my heels in and getting ready for the fight of my life.

This won’t be easy but I know with Allah’s help I can do it. It isn’t insurmountable.

I want to chronicle my journey on video and my blog to see how things progress. And hopefully I’ll learn something along the way.

May 28, 2022 0

The Spider

Yesterday I had a panic attack. I haven’t had one in a while so I didn’t recognize it. It was brought on by a black spider that crawled across my arm and hand while I was lying down.

After I brushed it off me, I had a few moments of worry because I could t find it anywhere in my room. Finally it came out from my clothes and fell on the floor.

In the aftermath, I couldn’t do anything. I sat on my bed mindlessly scrolling the net. I had heart palpitations and ramped up feelings of anxiety. I couldn’t breathe or calm down.

I couldn’t even relax on my bed due to the fear that the now dead spider was going to come back somehow or another one would race across my body again. It was debilitating.

I kept thinking someone magically sent the spider to terrorize me or scare me. And that the spider was somehow purposely out to get me. It wasn’t until I actively told myself “you”re not afraid anymore…” repeatedly that I started to calm down.

That hasn’t happened in a while.

But at least I could think myself out of it eventually. This is progress

May 28, 2022 0

Quran and Me in Ramadan

*Picture taken from YouTube*

Imagine me trying to finish the Quran more than once in Ramadan! It’s improving my relationship with Allah, the book (English contents/Arabic audio) and helping my mental health. I’m so happy.

My study consisted of listening to the Quran in Arabic, following along, while also reading the English translation. The parts I knew I read in Arabic and revised. Also, I tried to match the English translation to the exact words. It was challenging.

Finally, I read the summary on the ajzaa and topics on a Quranic website. So interesting. I’m the same person who was reluctant to link faith and the Quran with my mental illness journey. But this year after reading I’m realizing how much I like learning about Allah and the past communities. It makes me feel whole.

I didn’t know this could happen. I’m also noticing where I needed to rely on others for an Iman boost and Islamic education. I think this is important for solidarity and community cooperation.

I anticipate this journey (inshaAllah) with the Quran to continue after Quran and I want to work hard to study under the experts in my area to let this improve my health.

3 Things I learned through this process:

• It’s helpful to read a summary of the chapters and itemized outlines in addition to the translation. This, before you get to tafseer and such obviously.

> Benefit: My memorization and reading became stronger by the end.

• Listening to Arabic while reading English makes you concentrate more on what’s being said in both languages.

>Benefit: Translation word to word became easier as time went on and my vocabulary improved somewhat

• It takes patience to sit with Allah’s words and digest the material properly in order to make lasting changes in your life.

>Benefit: I’m just getting started with my Quranic journey and this month has helped me get a jumpstart on my goals. Both health and Iman wise.

———————————————-

Updated: I’m finished my Quran reading alhamdulillah! Now I’m going back through, and this time I’m reading only in Arabic. It’s my sincere hope that this thread inspires others like me to get back to the Quran in Ramadan and throughout the year (obviously not as strenuous though lol)

Next day…Alhamdulillah today I finished juz 30 (Arabic audio/English) & juz 1 Arabic. I’m going back to the beginning. It’s going faster this time. I’m also finally learning properly the dua for witr. I have so many things to learn in Arabic subhanAllah. Today has been emotional 🙂

April 17, 2022 0

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.

January 3, 2022 0

Narcolepsy

Photo by Karolina Grabowska on Pexels.com

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.

December 28, 2021 0

Drowning In Bottles: My Muslim Story Of Addiction And Substance Use Disorder – MuslimMatters.org

With alcohol addiction, I’ve experienced acute intoxication, extreme drunkenness and poisoning. I don’t like to think about how many times I’ve had alcohol poisoning because my behavior was so self-sabotaging.. Hopefully now I’m taking much better care of myself. And I don’t have the need to tempt fate or see how much punishment my body can handle. Overdosing hurts. And I’m never sure if the last time will be my “last time”. I don’t want to keep thumbing my nose at Allah’s mercy without realizing how many times I’ve been saved before.
— Read on muslimmatters.org/2020/08/17/drowning-in-bottles-my-muslim-story-of-addiction-and-substance-use-disorder/

December 12, 2021 0

Taking Psych Meds as Prescribed

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.

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.

December 6, 2021 0

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.

October 23, 2021 0

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.

October 22, 2021 0