Postural Orthostatic Tachycardia Syndrome

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Postural Orthostatic Tachycardia Syndrome
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    Why Dysautonomia Awareness Month is So Important This Year

    I am someone who always knows where the nearest seat and air conditioning is located. It used to be a major source of stress for me, but now this superpower is more instinctual. I may look normal on the outside, but I am often struggling with a high heart rate and fatigue from my nervous system trying to thwart gravity. Note to the public: gravity always wins. I live with postural orthostatic tachycardia syndrome , or POTS, a form of dysautonomia. Dysautonomia is an umbrella term to describe conditions that can result from a wonky autonomic nervous system. In my case, my nervous system doesn’t like being upright. Normally, your autonomic nervous performs a lot of great feats to keep your blood circulating normally when you stand up and gravity tries to pull everything to your feet. Your veins narrow and your blood pressure increases a little bit — all so that your brain can continue to get the oxygen it needs from your blood. In my case, my nervous system doesn’t want to be part of this great, coordinated concert and blood pools in my legs and feet. Trust me, it doesn’t look pretty. I used to be a homeschool teacher and one of my students kept saying my feet made me look like a vampire. Yup. He wasn’t wrong though. As a result of this wonkiness, I’m left with a high heart rate, adrenaline surges and fatigue, among a myriad of other wild, very unpredictable symptoms. The weirdest one? My pupils are always extremely dilated. Not the best look, especially when parents would get concerned about my “recreational activities” in middle school. I wasn’t always easy going with my experience with POTS and some days, I am very done with living with an incurable chronic illness. Thank goodness cookies and Sarah J Maas exist. Any form of dysautonomia can be debilitating, and while I don’t usually refer to myself as “sick” anymore, I am disabled. Although I’ve had low blood pressure my whole life, my journey with POTS didn’t really begin until after college. In 2017, I had several mild to moderate viral illnesses and finally, my body seemed to say that’s it , and I began experiencing severe POTS symptoms. Who knew a heart could accelerate from 70 to 180+ BPM in less than 30 seconds just by standing up! So why talk about POTS? October is dysautonomia awareness month , which focuses on advocacy for research and awareness. I am a huge advocate for dysautonomia education and research advances. An estimated 1-3 million people have POTS in the U.S. alone — that’s more than the number of people living with Celiac disease. It’s important to note that the vast majority of people who are diagnosed with dysautonomia are young women , a population that often struggles with finding the correct diagnosis and treatment for other “invisible” illnesses. Dysautonomia is most often misdiagnosed as anxiety and many physicians are unaware of dysautonomia. Both of these factors heavily influence the average 6-year diagnosis time for someone struggling with symptoms. This year, dysautonomia awareness month is different. In the past, whenever I would go to a new health care provider or the ER, doctors wouldn’t believe I actually was diagnosed with POTS at first. They would root through my records, seeking confirmation from my cardiologist, luckily one of the few leaders in POTS treatment . Looking at charts isn’t so simple because POTS doesn’t even have a medical code (ICD-10), a situation Dysautonomia International is advocating to be remedied shortly , so they’d have to read through years of notes. Talking about POTS has changed dramatically with the COVID-19 pandemic. While there are many potential “causes” of POTS, a lot of people have post-infectious POTS like me. Viral illnesses can cause changes in the body that impact the nervous system, resulting in fatigue, high heart rates, chest pain, low blood pressure, feeling out of breath, etc. Sound familiar? You guessed it — COVID-19 long-haul syndrome. Because of advocacy efforts from the dysautonomia community at-large, people struggling with COVID-19 long-haul syndrome have more resources available to them and hopefully have a shorter time to diagnosis than before. Although I would never wish any form of dysautonomia on someone, the increased cases of COVID-19 long-haul syndrome give me hope for advancements in medicine for dysautonomic conditions. One of the hardest aspects of treating POTS and other forms of dysautonomia is identifying the root cause of the syndrome. Research on COVID-19 long-haulers have already shown incredible potential advancements in our understanding of these conditions. If you’ve been suspecting COVID-19 long-haul syndrome, know that you’re not alone. I know that feeling like your body is out of control can be incredibly scary but know that it can get better. The Mighty has a community dedicated to COVID-19 long-haulers , so that you can get the support you need from people who get it. For anyone seeking more information about what it’s like to live with POTS, you can check out my personal blog, Chronically Salty . And if you don’t have any COVID-19 long-haul symptoms or dysautonomia, the best thing you can do is get the coronavirus vaccine to help protect yourself and your community, as well as help advocate for dysautonomia awareness month. There are a lot of people struggling with these invisible symptoms and just acknowledging their journey can make an incredible difference.

    How to Remind Yourself You're Worthy as Someone With Chronic Illness

    Are you worthy or worthless? I posted a graphic in a Facebook group I administer recently which stated, “A body that works less does not make you worth less.” I had been feeling frustrated lately with the limitations my chronic illnesses present on a daily basis. In my mind, I plan  to take our new camper all over the country, camping day after day while biking and exploring new areas. The reality, however, is that I have been able to go on weekend getaways with my husband but naps are part of the equation. And each time we return home, I experience exaggerated symptoms and exhaustion. Living with postural orthostatic tachycardia syndrome (POTS), Sjögren’s syndrome, mitochondria myopathy and several other chronic illnesses challenges my ability to perform daily tasks. Adding a special event to a weekend, such as camping, is exciting but also creates additional obstacles. The quote I shared on Facebook resonated with many people. Those with and without chronic illness commented how much they needed this reminder that we are indeed worthy. Sometimes our minds will challenge us. Perhaps, like me, you become frustrated when plans are canceled or not even made because our bodies don’t cooperate. In the 10 years I’ve been dealing with chronic conditions, I have learned it is OK to feel unworthy at times. It happens, but we must challenge ourselves to crawl out of the bleakness and try to live the best life possible. How? Here are 14 suggestions to help us not just survive but thrive and feel worthy of a good life. When you find yourself experiencing negative self-talk, stop and sit quietly. Then challenge yourself to reframe your thinking. Deal with varied feelings. Writing, praying, biking and talking to a therapist or other trusted people helps me process emotions. What have you found helpful? Seek help in the form of a support group or counselor. Give it a try; perhaps you will find it helpful. Join an in-person or online support group. Make sure it is a reputable group and you are comfortable with how it operates. Dysautonomia International runs support groups in many states (I moderate the New York group). Find things you enjoy and do them. I love to bike, knowing I may have to stop halfway through the ride to put my feet up and rest. I always have to nap longer on biking days and cannot ride two consecutive days. I try really hard to just be thankful for the times I can strap on my helmet and go. Practice flexibility — and no, I don’t mean the flexibility that comes with Ehlers-Danlos syndrome. I need to plan ahead when big events occur. When my son graduated from high school recently, I rested for days leading up to the event, hydrated more and made sure our seats at the local stadium were near an exit. I brought in extra salty drinks to stay hydrated. And despite my best efforts, I nearly missed the celebratory dinner due to exhaustion and stomach issues. I drank a lot of water at dinner and little else, but thankfully participated. Plan, but also realize that at some point the body will revolt. This is OK; our bodies are not perfect but we are still worthy. Practice the skills that help when you’re most symptomatic. Give yourself grace and love yourself despite challenges. Try to have fun. If you have a bad day (or week) get up the next day and try again. Remember that so many things can challenge us including weather changes, added stressors and activities. Say no when you need to. Be choosy in what you plan or commit to doing. Continue to socialize with those you love. Remember we are worthy despite bodies that challenge us each day. Laugh. Humor is a great coping skill.


    10 Tips for Traveling With EDS, POTS and/or MCAS

    If you have Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and/or mast cell conditions, you may need a vacation from preparing to take a vacation! There are so many things to remember to make sure you can be safe and manage conditions away from home.  This week, we are preparing for a family road trip from Florida to Michigan to see family we haven’t seen in a year and I find myself exhausted from the mental and physical preparations for our journey.  I can’t wait to be on the road with all the packing behind me! I have EDS and POTS and so does my daughter. My son has recently been diagnosed with hypermobility as well, and is exhibiting many of the same signs that we noticed with my daughter at that age: difficulty with pain while writing, pain with ankles and knees, back and neck pain, winged scapula, headaches, random allergies that can’t be nailed down, and gastrointestinal struggles.  Needless to say, packing for not one, but three folks with chronic conditions in one family requires the planner to be prepared for many predictable or erratic symptoms that may emerge during travel. Here are our top 10 travel reminders that may help ease the mental strain of trip preparation for our fellow EDS/POTS/mast cell travelers. I hope to use this checklist myself on our next journey! 1. Check all your prescriptions two weeks in advance. You may not be able to renew them yet, but know which are running low and check with your pharmacist to see what needs to be done to have all your medications on hand for your trip.  If your doctor needs to renew a prescription, you may have some back and forth communication that you need to allow time for, so be sure to do this well in advance of your trip to deal with any delays that may arise. If you carry an epi-pen for mast cell-related issues, make sure your epi and all inhalers are handy and within the expiration date. 2. Check all your supplements at the same time. Make sure you have ordered all your vitamins. In our house, between the three of us, we use adult and children’s versions of numerous vitamins and supplements. I also make sure to take my monthly B12 shot before traveling, so I do not have to pack syringes. 3. Order all pain-relieving supplies. For us, this meant checking our essential oil balms and rollers and actually mixing new supplies of both. We also bring BioFreeze, Lidocaine patches, and heating and cooling patches for me while I am driving. We pack heating pads, the TENS unit, all braces and AFOs. Don’t forget your KT or Rock tape and baby oil to remove it! We also are packing our physical therapy regimen printouts and supplies so we can continue our routine at our destination. 4. Ensure you have diet-friendly food items packed whenever possible. Folks in our house eat low-FODMAP and gluten-free items, so we need to have those on hand when we cannot find a diet-friendly fast food stop on the road.  You don’t want to become ill while stuck in the car for hours because you did not have food that works for you.  Make sure you have your stomach rescue meds on hand as well.  If I start having a food reaction, it’s one of the few things that work to help manage severe abdominal cramping. 5. Make sure to leave room in your car for mobility devices. We are still on the hunt for a used rollator, but this trip won’t involve demanding walking, so I will just need room for my cane and disability pass in the car. If you are flying or traveling by train, make arrangements for assistance if needed. 6. If you have a support animal (we do not), refresh your pet supplies and make sure you have room for them in your vehicle or luggage. If you are using modes of transportation other than driving, prepare adequately by contacting the airport or train depot to find out what you need to do to travel with your animal. Remember to make plans for any pets you leave in the care of others as well. 7. If you have mast cell issues, don’t forget to pack your magic masto cream or ingredients to make it. In my case, I had to mix up a new batch right before leaving.  Luckily, I had supplies on hand so I did not have to shop for them as well. Ensure you have an adequate supply of masks for your trip to limit your contact with triggering substances.  Also, pack all your toiletries so you can limit contact with products that may cause a reaction. 8. Don’t forget adequate hydration and salt. Stock up your electrolyte solution for the trip, and premix some for the long ride so you aren’t struggling to maintain a balance of fluids that doesn’t make you have to stop at every rest stop, or leave you parched and dizzy upon arrival. If you need to plan an IV infusion before you travel, make sure to schedule this well in advance. Also, for those who use it, don’t forget to pack and wear your compression wear to limit blood pooling while seated for lengths of time. 9. Have your emergency info card updated in your wallet and a list of your medications on hand in case you have a medical emergency while you are traveling. Some of you may have medical alert bracelets or necklaces to wear as well. For those with mast cell issues, this may mean a signed copy of the mast cell protocol from your doctor in case you end up in the Emergency Room after coming into contact with a trigger. 10. Take a deep breath. Traveling is a privilege and easier for some of us than others. Know that the effort you are taking to prepare will help make your trip more enjoyable and less symptomatic. While traveling can be hard on our bodies, being prepared will help us approximate the home environment as closely as possible, so we can enable ourselves to have an easier and hopefully, more pleasurable travel experience. Wishing you safe travels!

    What I Learned After Being Diagnosed With POTS

    My doctor has stopped with the surprised charade every time I explain I’ve passed out in the week since seeing her – surely it can’t be a surprise when you’ve been diagnosed with a severe cardiac dysautonomia. Scratching your head? I know I was when I first heard those words. Basically, my body goes into panic when I’m upright, and doesn’t know how to respond appropriately (seems on brand for me). My heart rate spikes, my blood pressure tanks, and I have become familiar with waking up on the floor after a fainting spell. It’s not all doom and gloom though. Who needs psychedelics when the room spins all the time? All jokes aside, living with severe POTS has become a challenge I’m exhausted fighting. Every day brings the same carousel of intolerable symptoms: dizzy, pain, nauseous, fatigue, overwhelm. Despite this, living with POTS has taught me so much about myself, and the world around me. October marks Dysautonomia Awareness Month, and in the spirit of raising awareness, here are some things I’ve learned after being diagnosed with severe cardiac dysautonomia. 1. The support of mobility aids for POTS totally outweighs the perceived ideas of what others might think of you. I’d love to say that my dignity was silent at the conversation on mobility. Nope. I held out on accessing mobility aids for years because I feared what others might think or believe about me. As a young adult, the prospect of using mobility aids scared me. I was scared for my reputation, for my career, and for my life. I didn’t want to lose my friends, and I didn’t want to give others a reason to bully me. Agreeing to use a wheelchair in an almost-permanent capacity was a decision I feared, but ultimately, I’ve been able to attend university properly for the first time in a long time. My wheelchair is my saving grace, and I have not enough gratitude for it keeping me going on the days where my body isn’t strong enough to do it alone. 2. Asking for help in life with POTS / dysautonomia is no point of shame. I have spent many, many hours in the local emergency department needing urgent rehydration. I could drink the local dam dry and still be dehydrated. That’s just one of the simple joys of POTS. Every so often, I feel like part of the furniture, I’m so familiar with the staff. But on days where my heart rate goes from 52 to 167 on standing, I need the help. So, despite every nervous, embarrassed fiber in my body, I ask for it. I ask for help. My POTS is teaching me to take challenges gracefully, and to accept help without being embarrassed or apologetic for my medical needs. 3. My life is mine to live, freely. What I have learned, most valuably, is to be gentler with myself – to be softer in the process of learning and understanding how to navigate my life around my medical needs. I am coming to understand that life will work in whatever wonderful way it wishes to and the best I can do is allow it, simply, to just be. Someone very dear to me, told me, “LLTTF” (live life to the fullest). I have contemplated this for some time, and it finally occurred to me that living my life to the fullest means accessing the assistance I need, being free in my Disabled identity, and showing up for myself in every moment. Living freely and fully in this body, and in this life, is not anyone else’s experience to define. My disability does not undermine who I am, my intelligence, or my creativity. My disability adds to the endlessly exciting mosaic that is my life. My life. Being diagnosed with a severe cardiac dysautonomia at 22 and becoming an almost-permanent wheelchair user was never what I had imagined for my life, but the lessons it has offered me continue to shine through in the dark moments. I am forever astounded by what my body can achieve, even in its limited capacity. This Dysautonomia Awareness Month, I’m celebrating the miracles of my Disabled identity. What are you celebrating?

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    12 Things a Doctor With Chronic Illness Wants People to Know

    I’ve written this article to help educate those who want to learn about chronic illness. It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness. I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness. About Chronic Illness C hronic illness is a disease, condition, or injury that can last years or a lifetime and is typically not curable, though in some cases it may go into remission. It can vary in its severity, with some people able to work and live active or seemingly “normal” lives; while others are very sick and may even be homebound. Many people with chronic illness have an invisible chronic illness. The severity of their symptoms is not clearly noticeable, which may lead to a lack of understanding and support from doctors, family, friends, and coworkers. 1. Nobody wants to feel sick. In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms. 2. Many doctors don’t understand chronic illness. For years, doctors were under the misperception that some chronic illnesses were caused by depression or anxiety and the only treatment available for these patients was psychiatric care. Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen. 3. Being unable to work is not a vacation. Those who are not able to work due to chronic illness are not “on vacation.” They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. They are often homebound, too sick to leave their homes except for doctor appointments. Have you ever been stuck indoors for a couple of days due to bad weather or a temporary health issue? Remember feeling annoyed with the inability to leave your home and be active? Now imagine not being able to leave your home for weeks or months at a time. Frustrating, right? 4. Chronic illness can trigger many emotions. Chronic illness itself can change the biochemical makeup of the mood control center in the brain. In addition, frustrations such as the following can affect a person’s mood and lead to depression and/or anxiety: the wait/search for a diagnosis inability to work and feel productive change in family dynamics loss of social interactions and isolation financial stress the struggle to deal with symptoms and perform simple daily tasks Those with chronic illness often feel a great loss. It is not unusual to experience some or all of the stages of grief (i.e. denial, anger, bargaining, depression, acceptance). They grieve for the life they once lived. They grieve for the life they must endure now. They grieve for the life they dreamed of having. Many people with chronic illness also feel very isolated. Even though they crave social interactions, their symptoms may make it very difficult and at times impossible to talk on the phone or type an email or Facebook post. 5. The symptoms of chronic illness are very complex. The symptoms experienced by those with chronic illness vary depending on the illness; however, many people experience some or all of the following symptoms: extreme fatigue, pain, headaches, brain fog, nausea, and/or dizziness. It is not unusual for the symptoms of chronic illness to wax and wane over time (sometimes even from hour to hour), so planning activities ahead of time can be very difficult. A “good day” for those with chronic illness would likely be considered a sick day for most others. 6. Chronic illness fatigue is much more than being tired. Fatigue is a common symptom in chronic illness and in many cases, it is severe, often debilitating. It can be easily triggered by simple daily activities or by more elaborate events such as holidays. Those with chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery. Those with chronic illness may need to rest often and may have to cancel events last minute. This does not mean they are lazy or trying to avoid activities. Once fatigue kicks in, there is no other option other than to rest. It’s as if the body “hits a wall” and can’t go further, no matter what. To better understand the fatigue and limited energy of a person with chronic illness, read this helpful article about  the spoon theory . Have you ever been stuck in bed for a few days from a really bad infection, surgery, or hospitalization? Think back to how that felt. You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years? 7. Pain is a common symptom in those with chronic illness. Those with chronic illness often experience severe pain, including headaches, joint pain, muscle pain, nerve pain, back pain, and/or neck pain. 8. Brain fog is extremely frustrating. Brain fog is frustrating because it is a difficult symptom to describe so that others understand its impact. Brain fog is a cognitive dysfunction common in chronic illness, which can include issues with word finding, concentration, and recall. Those with brain fog often know what they want to say, but can’t find the thoughts or words to communicate effectively. 9. There is a greater risk of dangerous infections. The immune system in those with chronic illness may be overactive and instead of attacking infections, the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and/or muscles. Many people with chronic illness are on medicines to suppress their overactive immune systems and consequently, need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness. 10. Certain foods can aggravate symptoms. Certain foods may aggravate the symptoms of those with chronic illness. Common culprits are gluten, dairy, sugar, soy, yeast, alcohol, and processed foods. These trigger foods increase inflammation which can cause a significant increase in symptoms that may last for hours or days (sometimes weeks). Because so many of these trigger foods are in our diet, it is often difficult to pinpoint which foods aggravate symptoms, and staying away from favorite foods can be a challenge. 11. Sensitivity to smells is common. Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness. Also, some of the medicines used to treat chronic illnesses are low-dose versions of chemotherapy drugs. The sensitivity is similar to that seen in those who are pregnant or on chemotherapy and have a sensitivity to smells. 12. It takes a lot of effort to manage chronic illness. Those with chronic illness have to be very regimented to make sure they get adequate rest, avoid trigger foods, take medications at the correct times, and avoid flares. It is understandable that sometimes they just want to feel “normal” and eat some pizza or stay up late, even if they know they will “pay for it later.” *** Despite struggling with grief, isolation, and often debilitating symptoms, those with chronic illness (and their caregivers) warrior on. They fight daily to be able to understand their bodies and to do things others take for granted. They are often surrounded by a society that does not understand their challenges, and therefore, is unable to provide adequate support. You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.” This is why it is so important you are taking the time to read this article. Thank you! This story was originally published on Mastering Health & Happiness.

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    The Mighty's Digital Toolkit for Caregivers

    Caregiving can be a rewarding experience, but it can also be stressful and challenging at times — and that’s OK! That’s why we’ve created this toolkit, so you can learn more about the ins and outs of caregiving and discover helpful resources you can utilize along your caregiving journey. Take what you need, and share it with others too. Here’s what’s included in The Mighty’s Digital Toolkit for Caregivers: A caregiving binder, complete with worksheets to help you better organize important information for the person you care for such as allergies, medical history, provider information and more. A respite care questionnaire that helps you find the perfect respite worker for your specific needs, plus resources for respite workers to use while you’re away. A self-care mini guide to help you destress and prioritize your mental health. P.S. Everything included in this toolkit is downloadable, printable and shareable! The content below is supported by the answers of over 150 caregivers we surveyed as well as caregiving professionals. Karin Willison , Mighty senior editor and blogger at Free Wheelin’ Travel, and Lexi Silva , Mighty Leader and caregiver advocate. What Does It Mean To Be a Caregiver? | Types of Caregivers | Caregiving Binder | How To Find a Caregiver or Respite Help | How To Support Caregivers | Caregiving and Mental Health | What Does It Mean To Be a Caregiver? download graphic Caregiving means something different to every person who steps into the role. Perhaps you’re a husband, wife or partner taking care of your significant other. Maybe you’re the parent of a child with a health condition or disability. Or you may not be related to the person you’re giving care to at all, and are a longtime friend. No matter what your relationship is to the person you help, the caregiver is a critical part of an individual’s support system. To better understand what caregiving means to caregivers, we asked our Mighty community about their experience. Here is what they had to say: “Caregiving enables our loved ones to have the best possible quality of life, for the rest of their life. It is a great responsibility, but also a great honor to be able to change one’s life in that way.” “Everyone has the right to live their lives with dignity, independence and happiness. To me, being a caregiver allows you to be a conduit for a person to have those three things. You can advocate for their rights, assist them so that they can live as independently as possible and help facilitate opportunities for them to pursue their passions or simply things that bring them joy.” “Being a caregiver means providing the support my parent needs. I help her by taking her to appointments, refilling her medications, paying her bills, and occasionally cooking for her. I also provide social support being the only person she really spends time with.” “Love and sacrifice.” “I took care of my father with the help of hospice. I have multiple chronic illnesses myself. Many days we were over extended and wiped out. Yet, I made it through thinking about how I too hope to be home and comfortable when it’s near the end. I was blessed to be able to spend this time with my dad.” Types of Caregivers When people think of caregiving, an image of a home health worker who assists someone with bathing, exercising or eating may come to mind. While medically trained caregivers do play an critical role, caregiving comes in many forms. If you are a person who assists with daily living activities, or supports the emotional or physical well-being of another person, you are a caregiver. Some examples include: A parent or guardian managing their child’s medications and school supports A grandchild shopping and preparing food for their grandparents who can no longer do it alone Someone providing emotional support A child ensuring the safety of a parent with Alzheimer’s A friend who drives another to cancer treatments and helps out their family An individual who researches resources and supports someone through their mental health journey The level of support and responsibility a caregiver provides for another person also varies. For example, an elderly couple where a husband has multiple sclerosis may live with his wife, the primary caregiver. She is the person who provides care to the best of her physical and emotional ability. A secondary caregiver could be a child or family member who can support them in areas of need, such as managing doctor’s appointments, transportation and housework. They may also assist the primary caregiver with errands or help give the primary caregiver time to herself. This is called respite care. A tertiary caregiver may be a home-health physical therapist, occupational therapist or companion to provide socialization. Whether you identify with any of the descriptions listed above or have taken on a different role, your efforts matter. Caregiving doesn’t have a look. It’s so much more than a stereotype. Caregiver Binder Caregiving requires a lot of organization. We know that navigating medical records across different hospital systems can be challenging, especially when there is more than one home care provider in the mix. That’s why we created this printable caregiving binder, so you can consolidate the important information you need to keep track of medical records, relevant contact information and important documents — all in one place. Plus, you can print copies and share them with family members, respite workers and new providers as needed. Medication List With this worksheet, you can write out all of the medications your loved one uses and keep important notes, like the frequency of a specific medication, who the prescribing physician is and any special considerations to remember when giving the medication. Medical Team Medical teams come in all sizes and combinations, but as they grow it can be challenging to remember which role each member plays as well as the relevant contact information. Our medical team worksheet helps you keep track of appointments, phone numbers and the names of everyone on your loved one’s health care team. Allergy List Keeping track of allergies — dietary, seasonal, medical or otherwise — is an important part of caregiving. With this sheet, you’ll be able to write down all the important details, including the person’s reaction. Plus, you can print out copies to give to others so that they’ll be in the know as well. Procedure History When sharing someone’s medical records with a new provider, they’ll want to know your loved one’s procedure history. That’s why we created this worksheet to help you keep track of relevant procedures (both inpatient and outpatient), which physician ordered them and when they were performed. In Case of a Crisis Even though we try to avoid crisis and emergency situations as much as we can, they do happen sometimes. This worksheet will help you prepare just in case. You can fill it out in advance and make several copies to share with ambulance workers, ER physicians and hospital staff. Should a crisis arise, we hope this worksheet can help make it a little bit less stressful. Additional Documents We hope the toolkit items we outlined above will help you start a caregiving binder that’s unique to your situation. Some other documents you may want to consider adding to the binder include legal documents like an advance directive or do-not-resuscitate (DNR) order. You can check off which documents you’ve chosen to include. download resource Here are some additional caregiving resources to check out: National Family Caregiver Support Program Caregiver Action Network Caregiving and Cancer Resources How To Find a Caregiver or Respite Help A respite caregiver can be an important part of your caregiving support network. The goal of respite care is to provide short-term relief for you, the primary caregiver, from your typical caregiving duties. Generally, a respite caregiver will take over caregiving responsibilities for a set number of hours. They can be available for a particular afternoon or for a few days or weeks. Respite care can be provided at home or in an outside facility such as an adult day care or hospital. This provides an opportunity for the caregiver to rest, and can also serve as a way to help relieve their stress, as well as protect their mental health and well-being. As a caregiver, you can relax and recharge during your time away knowing your loved one is in a safe environment and being cared for by professionals. Another form of respite care are short- and long-term home health aides that your loved one may be eligible for, depending on their level of independence. These aides usually assist in daily living activities such as bathing, eating and some light cleaning for a set number of hours per week. When the aides are in the home, the primary caregiver is able to rest and leave the house. If you read the previous paragraphs and your first thought was that respite care is just the thing you need, your second thought may turn to worry: How would you pay for it? Unfortunately, paying for respite care can be complicated. If your loved one is eligible for home health, Medicare or Medicaid will cover the cost of care for a certain number of hours per week, as determined by your loved one’s doctor and/or state Medicaid evaluators. If your loved one is not eligible for home health care, payment can be more difficult, as most insurance plans do not cover the cost for this type of respite care. However, Medicare may cover the cost of up to five days in a row of respite care in either a hospital or a skilled nursing facility, depending on the needs of the patient. If your loved one is in hospice, then respite care may be covered. In order to help you organize and evaluate potential respite care, The Mighty has developed a checklist you can use to determine if a particular respite caregiver is a good fit for your situation. It’s important to feel comfortable with your respite caregiver so you can relax and recharge during your break from caregiving duties. We hope this checklist gives you some peace of mind! download resource Once you’ve chosen your respite caregiver, it’s important to help them understand the specific needs and typical routine of your loved one. You should also feel empowered to ask for feedback and/or progress updates on the respite caregiver’s time with your loved one. That’s why The Mighty created a list of daily activities you can personalize as well as a worksheet. These printable tools can help you communicate more easily with your respite caregiver about what your loved one does on a daily basis, the level of assistance they require with performing these activities, as well as what happened during the time they spent together. download resource To learn more about finding respite care, check out these resources: Disability Home Care Guide Hospice Services Medicaid Service and Support Medicare and Respite Care Coverage Private and Additional Care Options: ARCH National Respite Network Eldercare Locator National Adult Day Service Association How To Support Caregivers While caregiving can be incredibly rewarding, it also can be challenging. Caregivers focus a lot of their time and energy on their loved ones and have the tendency to push some of their own needs aside. In a survey we conducted of 150 caregivers, 52% of the respondents also identified as living with a health condition themselves. Balancing the care of a loved one while also managing a personal health condition can be difficult. But even if you don’t live with a health condition yourself, we know that caregiving can impact your mental health and stress levels, finances, relationships and career plans. That’s why we’ve created this section of the toolkit just for you, with tips, insights and resources from other caregivers to help you along the way. No matter the type of caregiver you are, know that you’re not alone in this journey. It’s OK to feel frustrated and exhausted, and it’s understandable if you need to take a break sometimes — we’re all human. Just because you need some space away from the person you’re caregiving for doesn’t mean you love them less. We asked caregivers about some of the struggles they face in caregiving. Here’s what they had to say: “Being a caregiver is exhausting physically, mentally and emotionally. It can completely change the dynamics of your relationship with the loved one you’re caring for — as well as every other relationship in your life.” “Caregivers need a break sometimes to care for themselves, and we can’t always rely on other family members for that.” “How isolating it can be. How impossible it is to struggle with my own chronic condition while managing my son’s and my mother’s health, too. More compassion. More help. I’m hanging on by a thin thread. And I’m hungry. I wish I had the time and energy to cook healthy meals every day. And I can’t put gas in my car.” “I finally accepted that taking time for myself isn’t selfish. It’s necessary.” “It is vital that the caregiver have their own life away from the person they care for so that their world is not only just caring for the loved one. It will leave you with nothing.” You’re not alone in this — our Mighty community is here for you. The following sections include resources for some of the challenges the caregivers we surveyed face. Maybe they’ll help you too. Pursuing School or a Career Balancing the responsibilities and time devoted to caregiving alongside your education or career can be difficult to navigate. It is estimated that 53 million in the United States are caregivers for loved ones and 60% of those people balance earning a paycheck with their caregiving duties — that’s nearly 32 million Americans who have jobs in addition to serving as a caregiver for a loved one! 1 Many caregivers are also pursuing an education: 1 in 10 is enrolled in college or other classes. Many of these student caregivers also work, on average, 32 hours a week. Seven in 10 of these student caregivers also say caregiving has impacted their academic performance. 2 So how can employees and students who are caregivers find the support they need to help manage their stress alongside the duties of work, school and caregiving? Employees should familiarize themselves with the benefits their company may provide as well as any rights they may have through the Family and Medical Leave Act (FMLA) . Your company may provide things like options to work flexible hours, support through counseling and the ability to use paid time off to care for your loved one. If you are covered by FMLA, you should be entitled to take up to 12 weeks off of unpaid leave a year to care for a spouse, child or parent. A good person to talk to about any benefits you may have or your rights under FMLA is your company’s human resources representative. For student caregivers, the process of receiving support from their school is often less clear. Only 1 in 5 students reported  that their schools had no policies in place to support caregivers of adult loved ones. 3 It was also less apparent which school official students should turn to for support. Student caregivers reported turning to instructors, academic advisors and residential assistants, among others, when they felt they needed support. Some resources you can utilize to help balance caregiving and school include: American Association of Caregiving Youth Caring Senior Service Student Caregiver Scholarship Opportunities Managing Finances Many caregivers assist their loved ones with financial decisions. This type of financial caregiving can involve responsibilities ranging from budgeting for groceries, to helping pay bills, to assuming full control over someone else’s finances with a legal document called a “power of attorney.” If you’ve noticed that a loved one is having trouble managing their money due to memory issues or other health problems, or you are just planning for the future, the Consumer Financial Protection Bureau (CFPB) has created a useful guide to help you decide what type of assistance your loved one needs. The CFPB’s guide will help you decide which type of financial caregiver you are: formal or informal. If you are someone your loved one brings along to appointments at the bank or even adds to a checking account, you are considered an informal caregiver. Formal caregiving involves legal documents and designations like “power of attorney” or “guardian” that give you total or much more control over someone else’s finances. The guide also contains a list of questions to help determine if you are a good fit for being a financial caretaker. There are also more resources to help explain what the legal terms for formal caretakers mean, for example, “trustee” and “guardian.” In addition to assisting with the management of your loved one’s finances, caregiving may also have an impact on your own personal finances. In our caregiver survey, almost 70% of caregivers have a difficult time meeting their essential household expenses. Caregiving can become a full-time responsibility, and juggling two jobs — one at home and one in the office —  can be very difficult. Our survey showed that of those who quit their jobs, 67% of them were parents and 55% of them were taking care of loved ones with or experiencing a mental health condition themselves. If you’re struggling to keep up with your finances, the finances of your loved one or both, you’re not alone. Here are some resources you can use to help explore your options: ABLE Savings Account An Introduction to Long Term Care Insurance An Introduction to Personal Care Agreements Balancing Caregiving Relationships Caregiving can impact relationships you have, both with the person you’re caring for and your relationships with others. Most caregivers don’t report conflict with their family members due to their caregiving relationship. However, relationships with other members of your family can become strained due to disagreements over things like how to best manage finances, which courses of treatment should be pursued for your family member’s illness and how the responsibilities of caregiving should be divided among family members. In a study, over 20% of caregivers reported some level of disagreement with their family members about their loved one’s care. In addition to issues that can arise directly from not seeing eye-to-eye with your family members about your loved one’s care, caregiving can also impact your relationship with your partner. For example, adults who were longer-term caregivers said they weren’t as happy in their marriages as those who had recently started caregiving . This suggests that the strain of caregiving responsibilities builds over time. It’s so important for caregivers to carve out space for themselves and their partners by utilizing things like respite care so they can avoid burnout and lessen the potential negative impacts on their other relationships . Spending time focused on your partner can remind them that you value them and your relationship even though you may have to devote a lot of time and energy to your caregiving duties. Some ideas you can try to focus on your relationships outside the caregiving role can include: Game nights with the family Food delivery and having a date night at home Streaming a new movie you’re both eager to see Playing music together or listening to your favorite songs Going to visit a local museum or park Having a “slumber party” with your child at home Subscribing to a monthly specialty box delivery service where you can receive an assortment of items from crafting projects to snacks Caregiving can also take time away from other relationships outside of the family. It’s important to keep in touch with your friends, and doing so can help support your mental health. You may sometimes feel guilty for leaving your loved one at home or with a respite worker, but know that taking the time for yourself will ultimately strengthen your caregiving relationship because you won’t be as burnt out . If you’re struggling to manage the caregiver relationship, consider family counseling. A counselor may also help you identify signs of burnout in yourself and provide you with additional support and tools to manage the stress involved in caregiving, and how best to navigate balancing relationships as a caregiver. Caregiving and Mental Health The circumstances that caregivers face every day can be stressful. In our survey, 61% of caregivers felt they need more stress relief to help cope with caregiving. These increased levels of stress can affect both your physical and mental well-being. Much like the person you are caring for, caregivers need support for their own health too. Without breaks or relief from the duties and responsibilities of caregiving, life can feel overwhelming and caregivers may develop burnout as a result. This stress and burnout is at least partially responsible for caregivers’ elevated risk of developing a mental health condition. Our survey also showed that 84% of respondents felt that the impact on their mental health had been the most challenging component of caregiving. The American Psychological Association recommends that all caregivers, at a minimum, undergo a mental health screening provided by a health care professional at some point in the caregiving process. In addition to caring for yourself by making the time to seek appropriate care from professionals, self-care can and should be part of your overall mental health care plan. When caregivers make time for themselves, they help to ensure they are physically and mentally healthy enough to continue looking after their loved ones. In order to encourage self-care, The Mighty has included a few gentle reminders in this toolkit. Your needs matter. download resource We also talked to caregivers about what they do to help protect their mental health. Here’s what they said: “I recharge at night — after a long day at work followed by hours of caregiving, I like to snuggle up in my bed and read a good book. Maybe I go to bed too late from it more nights than not, but the quiet recharges me more than anything else.” “Hiking is my go-to destressor. I talk with my best friend on the phone and just get out into nature a little bit. Having a beautiful view at the end doesn’t hurt either.” “Kayaking is my favorite way to destress. I also enjoy curling up on the couch with a good book. Sometimes I get carried away and read for hours, but I think it is important to take that time for myself.” “Having a nice shopping trip where you buy what you like. Pamper days with a bubble bath, listening to your favorite music and spending time with loved ones. Watching a movie, garden or bake — hobbies you enjoy. I love creating handmade cards and gifts.” “By taking each day as it comes, one step at a time, one day at a time. Listen to music, read books, and don’t worry about those things I cannot control.” “Try to go get a massage once a month, have planned phone calls with other moms in similar medical situations. Hand the kids/caretaking over to my husband at least twice a month to go run errands or something alone. Write through my feelings.” “I find hobbies and activities I can do both with my parent and in my own free time. I crochet, read and spend time with my friends.” You can also check out these stress-management tools and resources: American Psychological Association Anxiety & Depression Association of America Insight Timer NPR Isle of Calm: 6 Hours of Calming Music UCLA Guided Meditation Podcast How to Get Help In a Crisis If you’re struggling with suicidal thoughts, know you are not alone. There is help for people who feel suicidal. If you need help right now, you can call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741 . Head here for a list of crisis centers around the world and visit our suicide prevention resources . Neither The Mighty nor Janssen are responsible for the content or Privacy Policy of any third-party websites. This toolkit was created with funding provided by Janssen Global Services, LLC. © Janssen Global Services, LLC, 2021. All Rights Reserved. 1 AARP, N. A. for C. (2020, May 14). Caregiving in the United States 2020 . AARP. Retrieved September 19, 2021, from 2 Hartman O’connell, I., & Skufca, L. (2020, September 1). The unique experience of students who are family caregivers. AARP. Retrieved September 5, 2021, from 3 Ibid.

    Jamie Jasinski

    Grieving the Person You Were Before Chronic Illness

    Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my blood work came back extremely abnormal in the autoimmune area. I can remember the exact emotions I felt in that moment on the phone and how scared I was, and I can remember the fear I felt the day upon receiving my diagnoses. While I knew that rheumatoid arthritis and Sjögren’s were bad, I didn’t know that they would be life-altering. Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning for my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore. Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression, and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared. With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around. While I was told I’d have this forever, I did think that with medicine, I’d be back to my normal self eventually. Maybe I was naive to think that. I, instead, seemed to have more symptoms as time went on. Just yesterday, I found myself saying out loud that I felt like I needed to be in the hospital hooked up to an IV because I couldn’t handle the pain anymore. This statement was coming from someone who is absolutely petrified of hospitals. The pain ranges from my fingers to my elbows, to my neck, hips, knees, and ankles, and I turn into a child not knowing how to help myself. I try so often to think of how I can explain the type of fatigue I experience because it’s probably one of the hardest components of this. I try to explain to my husband that I’ll be going through my day and all of sudden, fatigue hits me. It feels as though if I don’t lie down at the moment that I’m going to collapse. It feels like the time in your life when you have felt most drained and energy deprived, but it happens multiple times a day and lasts two to three hours each time. No matter how much I rest, I still feel like I haven’t slept in days. Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping. I’ve just been told that my body will never be the same again, so I wanted to say goodbye to you as I await the arrival of this new body. You gave me the privilege of being left-handed and being artsy since I was so young; you gave me the rhythm and moves that helped me find a love of dance that lasted me 10 years. You gave me the courage to go on stage and dance while my family and friends sat there to watch and support me. You sent those smiles to my face that others would often tell me made their day; you made me a genuinely happy person that would never allow the bad things in life to take over. You gave me the ability to take up running at the age of 26, and you showed me that if you really put your mind to it, you can achieve things you didn’t think you could do. You stayed with me while I began a weight loss journey and achieved what I set out to do. You gave me countless miles of walking around and exploring life like one should while growing up. I don’t think I gave you enough credit at the time, but you managed to keep going on the days when you barely had the energy to do so. You got through going to college full-time, while also working 30 hours a week and trying to make time for my family life and also a social life. You won’t be taken for granted and will be remembered and appreciated for the rest of my life. I will miss your energy. I will long for the days of being pain-free and being able to walk around with no issues. I will miss our shopping trips, as they will be few and far between soon. I will miss vacations where I didn’t have to worry about planning around taking breaks and rests throughout the day. I will miss a body free of medication in order to function. Most of all, I will miss the feeling of being me the most. My new body will be different and not the one I have known since I was born. I will still be me inside, but I’ll never really feel the same again. Thank you for the time I was able to have you.

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    Charles Mickles
    Charles is an author, speaker, and an elementary principal who has has battled chronic illness since he was 15.