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The Advice I'd Give Myself During My POTS Diagnosis


Being diagnosed with a chronic illness such as postural orthostatic tachycardia syndrome can throw you into a whirlwind of emotions. At first it feels like a huge relief to be able to put a name to all of the symptoms you have been feeling for the last few years, but as you settle into this diagnosis, you soon realize that having a name doesn’t mean there is the quick, easy or painless cure. Reflecting over the past year, since the time of my diagnosis, there are a few pieces of advice I would give to my former self – or to anyone who has recently been diagnosed with a chronic illness.

Learn to accept that this is the position you are in now, but that it is not permanent. Nothing is put in your way that you can’t overcome.

There are going to be days where you want to give up. Days where the pain is just too much. You will be tired of living in a fog. You’ll want to throw in the towel because you wonder how you will live the rest of your life feeling this way, but don’t. The sun will set on those days and it will rise again with another chance to fight back. This is not your forever.

Don’t let the fear of your own body failing you stop you from taking risks. Book the flight to the music festival even if you think your body cant handle it. Take the job where you will have to push your body to its limits because it’s your dream job, and nothing is going to stop you from taking that. When you aren’t sure if your body can endure whatever risk you are considering taking, say yes. This will prevent you from having to sit back and watch your life go by wondering “what if.”

But on the flip side, know when you need to listen to your body. When it’s screaming, “Give me a break!” take that break. And don’t feel ashamed when it feels like you are giving in. Sometimes you need to give in. You are chronically ill after all.

Learn to love “me time.” Often times it will be the only way to reset and replenish those spoons. Even though being alone with your thoughts can be one of the most difficult things, you will learn in time that this time alone is crucial for your mental and physical well-being.

Find yourself someone within the spoonie community to be the one person that you can text every time you feel like dirt or when you experience a new symptom that you have no idea how to deal with. This person will help you get through your darkest days and will understand you better than anyone else does, because they live through this everyday just like you. This person will become one of your best friends.

Not all places that once were accessible will be accessible to you anymore. There are too many places that are not handicap accessible and some days those four flights of stairs to get to the rooftop of your favorite restaurant will be too much. That’s OK. Eat on the first floor and try again next time.

Never judge a book by its cover. You never know what others are going through, so always be sensitive to people. Don’t stare when you see someone who “doesn’t look sick” being pushed around in a wheelchair. Don’t question people who take the elevator up one flight of stairs. There is no such thing as looking “too healthy” to be sick.

Be your own advocate. Don’t let doctors tell you that there’s not something wrong when you know that there is. You know your body better than anyone so fight for that blood test. Insist on getting that MRI. Suggest medications that you have researched that you think might be your answer to feeling better. Don’t take no for an answer. If a doctor tells you “no,” find another one. You deserve to have your health in the best hands so don’t stop until you find that.

And most importantly, lean on your friends and family. Remind yourself daily of the support system you have and never feel like a burden. They may not understand exactly how you feel but they want to be there for you so let them.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

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An illustration for Yom Kippur, illustrating doves, apples, a book, and horn.

3 Tips for Observing Yom Kippur When You Can't Fast


For many people around the world, Yom Kippur is a holy and important day of atonement, forgiveness, and beginning the new year right. One major tradition for Yom Kippur, however, is to fast from sunset on the night it begins to an hour after sunset the following day. For many of us, especially those with chronic illnesses, fasting is not an option. In the past I have had to eat breakfast in order to take my medication, but was able to fast for the rest of the day. This year, however, I cannot fast at all. My recent diagnosis of postural orthostatic tachycardia syndrome (POTS) means that I must eat and drink throughout the day. I know many other people are in similar, if not the same, situation – and if they are anything like me, it is a difficult situation to be in.

This has caused a lot of cognitive dissonance for me, as a person who values both Judaism and my health. So what does it mean for those of us who wish to observe Yom Kippur, but cannot do so in the traditional way?

Here are some tips that I have thought of, and that I hope to remember as the holy day approaches:

1. Remember that your health comes first.

Judaism places a strong emphasis on health. If your medical condition requires that you don’t fast in order to take care of your body, it is a mitzvah not to do so because you are valuing your own health. In the past, I have been told by rabbis that it is OK to drink water just to take an Advil for a headache on Yom Kippur. If this is something acceptable, then surely eating and drinking to reduce the likelihood of adverse medical symptoms is also more than OK.

2. Nobody has the right to judge you.

Yom Kippur is all about forgiveness. Anybody judging you for doing Judaism your own way is not focusing
on asking for or granting forgiveness. Moreover, the only one with any right to truly judge you is G-d, and I believe – as do most rabbis – that G-d will not judge you negatively for putting an emphasis on your health.

Valuing your health does not mean Judaism is any less important to you; it just means that you are in a challenging situation which requires more balance and intention than Yom Kippur typically holds. And nobody has the right to judge how you handle this complex and difficult circumstance.

3. There are other ways of observing the holiday.

This holiday season, I am living in the Old City of Jerusalem – the holiest place in the world, and the most amazing place to be for the holidays. I spoke with the “house mom” of our trip, an amazingly sweet and understanding Orthodox woman, and we discussed alternative ways of observing Yom Kippur. Fasting is just one thing we do on the holiday, albeit the most emphasized and well-known one. But it is more than possible to go to services, participate in discussions, and be with family and/or friends, even if you need to take food and water breaks throughout the day. We fast so that we can focus on repentance, but you can repent and discuss without putting your health at risk – in fact, it is the best thing that you can do.

Yom Kippur is not, despite what popular opinion may tell you, a holiday all about fasting. Nor is it a sad day. Yes, it is the Day of Atonement, but it is also a day of reflection upon the past year and thinking about the coming one. This is my first year not fasting at all and though it is difficult for me, my situation has also made me more understanding – and with that, more forgiving. And what is Yom Kippur about if not forgiveness? You can ask for forgiveness and forgive others, you can make personal and spiritual goals, and you can explore your faith without putting your health at risk. In fact, on this day it is the most important thing you can do.

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students taking notes during college lecture

When the New School Year Means Repeatedly Introducing Yourself as Disabled


This week I started uni. I also visited my new GP, started a new volunteer job, took up an old volunteer role again and applied for a job (go me!). I’ve given up counting how many new people I’ve either met or introduced myself to. Uni alone involves a collection of disability and mental health advisers, lecturers and fellow students. The vast majority of the interactions have gone along the lines of:

“Hi there, just wanted to introduce myself, I’m in your … class. I have a few health issues and need some accommodations to make it easier for me to learn.”

 

I don’t mind doing it – I’m perfectly happy speaking up and making sure I get what I need, and every person I’ve spoken to has been supportive (some going above and beyond), which is great. But I reckon in the last two weeks, I have introduced myself like this or similar at least 15 times.

I’m exhausted. I feel like I’m losing my identity. Because while my health is part of my identity, and I don’t disagree with that, I don’t want it to be the primary thing people know about me. With access requirements though, it can’t wait. I need those things in place before I start, before I’ve even met the staff in person.

Everyone else introduces themselves in class, “I’m … and my interests are …” That’s what they’ll be remembered by. Meanwhile, I’m “the disabled one.” But I am so much more than my disability. Especially in an academic context, I know I have so much to contribute. And in time, people will hopefully realize that. But for now, I’m the disabled girl. You’ll find me on the floor with my dictaphone.

Follow this journey on POTS & Spoons.

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The writer showing her new spoon tattoo on her arm.

6 Ways to Save Your Spoons in College


I’ve never been one to take the easy route. I like to challenge myself, push myself outside of my comfort zone, and try new things. College is the perfect place for people to step outside of the bounds of their usual daily activities and take part in something amazing and new. And, in my three years of college, I’ve learned a lot about preserving my energy for what matters.

Here are some good things that happened:

1. I auditioned for and got into two different shows run by student theater groups on campus.

2. I joined the Disabled Students Collective to meet fellow disabled students and discuss how we can make campus more accessible to the disabled.

3. I met another girl with postural orthostatic tachycardia syndrome who gets IV infusions and instantly bonded with her.

4. I visited Gallaudet University.

5. I cooked two pounds of pasta and made homemade bolognese sauce.

6. I went to a drag show at a local gay night club.

Here are some negative things that happened:

1. I spent a whole Saturday nearly crying from how much pain I was in after going to the night club.

2. I suffered through a psychology class on the verge of a severe migraine due to a flashing light directly above me and a thunderstorm approaching.

3. I was late to my first American Sign Language class because I infused the night before and forgot how sleepy it made me.

4. I nearly fainted on the shuttle bus because the heat was on and no one would give up their seat for me. (Never mind the fact that I was infusing and had my Medic Alert bracelet on.)

5. I nearly fainted in yoga because the teacher had us practice ways of getting to down dog for nearly half of the class.

6. I missed dinner because I came home from class and was in so much pain from walking around with friends that I took a three hour nap.

7. I nearly fainted in Whole Foods because the line was so long.

Some of the negatives were due to my poor judgement. However, most of them were due to things I couldn’t control, but should have been prepared for.

The writer showing her new spoon tattoo on her arm.

After looking back at my mistakes, here are some tips I can offer so you don’t use up all of your spoons day after day.

1. Don’t try to do everything. You’re allowed to say no to friends, student organizations, and even teachers. Just because you want to join a team doesn’t mean you’ll have the spoons to do it at the end of the day.

2. Expect the unexpected. Check the weather religiously before you leave for class and always carry rescue medications or snacks with you. You may need your medication at times, but not have time to run back to your dorm to get it.

3. Be prepared to self-advocate. I know this one is scary, but most teachers will be willing to work with you. Make sure to get in with your college’s Disability Support Services to register yourself so you’re eligible for accommodations.

4. Eat three meals a day when possible. Seriously. Forgetting breakfast, lunch, or dinner is the worst thing you can do. Even if you can’t stand much food, eat as much as you can at the time. Be sure to bring snacks with you if you feel like it’s a day when you won’t be able to eat full meals. You need to supply your body with the energy it needs.

5. Get enough sleep. I know it’s tempting to stay up with your friends until 1 a.m. every day, but your body will be in full shut-down mode soon enough. Even if your extracurriculars keep you out late, do your homework beforehand and try to sleep as soon as you get back to your dorm. Your body and grades will thank you.

6. Find a support network. Whether it be fellow spoonies, your roommate, or that one kid who always asks how you’re doing, find someone who will help look out for you and lend a hand when you need it. It can be draining to not have anyone watching out for you when you’re away from your parents.

These are only a few suggestions, but I really hope they can help any chronically ill college student who might be struggling with how to handle things on their own for the first time.

If all else fails, just find a way to always have an extra “spoon on hand” like I did.

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The writer rock climbing on a mountain.

5 Struggles of Having an Invisible Illness


What does it mean to be “invisibly ill?”

If you are invisibly ill, usually that means that people can’t tell by looking at you that you’re sick. You don’t have a broken arm, a wheelchair, an insulin pump, or any other clear indicators showing that you aren’t well. Some conditions that fall under this category are: chronic migraines, lymes disease, depression, autoimmune diseases, or postural orthostatic tachycardia syndrome (POTS).

I am currently living with POTS, which is a condition that frequently causes me to become very dizzy and faint when doing common day-to-day activities. I also have celiac disease, anemia, and temporomandibular joint dysfunction.

Being ill while still “looking fine” is something that can be lonely and difficult. Many of us with chronic illnesses are tired of the typical, “You look just fine,” “I’m sure you’ll get better soon,” or, “You’re still sick?”

Don’t get me wrong, I know that people mean well. People care and they want to do everything they can to help you, and I have experienced an overwhelming amount of support that I will always be thankful for.

But for those that may be wondering, here are some of the struggles that we often encounter:

1. Many of us have trouble talking about our illness.

To be honest, I try to avoid talking about my illness at all costs. I don’t want to be perceived as weak. Prior to being sick, I was an avid rock climber, hiker, and traveler. I’d rather be seen as the climber girl than the sick girl.

Only one or two people at my work even know that I have POTS. I work a desk job, so I am able to sit down all day doing my work, which usually is OK for me. Sometimes I just want to get my mind off of my struggles, so I don’t talk about them very much.

I usually don’t want people to feel bad for me either. Sometimes not talking about my illnesses to others does leave me feeling lonely and sad. I know that I should be more open about it, and I’m working on that.

2. Sometimes we’re embarrassed.

Just the other day, I was walking in Home Depot, and I got very dizzy and had to sit down. I have trouble going shopping sometimes because being on my feet makes me light-headed. I saw several elderly ladies walking past me, and thought, “They’re doing better than me.”

I’m 22 years old and I struggle to do things like going to the store. Because of how active I used to be, that can be embarrassing. I have a tendency to hide my struggles because it makes me feel uncomfortable to share them.

I recently got a handicap pass, which has helped me lots on really bad days. I know that some people probably look at me and think, “She’s just fine, why is she parked there?” I totally get that. I used to do the same thing! Yet, I’ve learned we should never judge because we don’t know what people are going through.

3. It can be difficult to accept help.

I am definitely stubborn. I like to do things for myself, and it can be hard to accept help when I need it. This is something that I’m getting better at. I’d much rather be on the other end… doing the helping for someone else.

But I have to remember that I would be happy to help someone in my situation, just as many are happy to help me. I am learning to humble myself and to not worry too much about what others think.

4. We feel like we’re missing out.

I think this has been the hardest part for me. When I see people doing things I love, such as hiking, climbing, or biking, I am happy for them, but it reminds me of how I used to be able to do those things without worry. It’s hard not to feel sad. I miss the freedom to be active and to be strong.

I hope and believe that I will be able to get back to these things I love in the future. And I still try even if I end up feeling too sick or faint. I guess that’s what matters, right?

5. Doctors and modern medicine have their limitations.

Even when we’re doing everything we can to feel better, sometimes it isn’t enough. For example, if you look up POTS, you will find that things like drinking more water, eating more salt, wearing compression stockings, and taking medication help alleviate symptoms.

When I was first diagnosed, I was sure that these things would all work and I’d be cured in no time. I quickly found that this was not the case. Doctors know very little about the condition and how to treat it, and so there is a lot of experimenting involved in trying to treat POTS.

I know many other conditions are similar, and it is frustrating when there is no medicine or cure for you.

Though living with a chronic illness has been very difficult, I feel I’ve grown a lot from it. I’m learning to stop caring what other people think, to fight the urge of comparing my situation to others, to not feel sorry for myself, and to focus on my health.

I do not write this article looking to complain or to find pity, but more to spread awareness to others about what it’s like to have a condition like this, and to bring hope to those that are struggling with similar trials.

I’d like to encourage you to not give up and to find joy in the small victories. Just last week, I went up into the mountains to have a campfire, and it was wonderful. I felt incredibly blessed to be able to experience nature in a way that didn’t make me feel sick. I took in the beautiful views and the fresh mountain air, and I felt happy.

Look for those little things that make you feel alive and happy. Having an invisible illness doesn’t have to be miserable.

Follow this journey on Gone to POTS.

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illustration of a student studying at their desk

11 Tips for Studying With POTS


Studying is tough. Studying while dealing with chronic illness is even tougher. I’m fortunate to even be able to study, but I still need to manage my energy – or spoons – in order to maintain balance. Here, I’m sharing some tips which have helped me deal with some of my symptoms:

1. Stay hydrated.

It may sound obvious, but it is so important. Leaving an empty 200-ml. glass on a bookshelf doesn’t count! I try to keep a large, refillable (to save the environment) water bottle on my desk when I’m studying. In particular, I love Contigo water bottles because they store loads of water while remaining lightweight – making them easy to carry. The more water the bottle can hold, the fewer trips for refills necessary. This conserves energy, which is especially important if you’re studying while chronically ill. In addition, fewer trips limit possible distractions.

 

2. Find the specification.

Hunting down the specification for your subject and exam board can help you avoid unnecessary work. Textbooks can contain extra material which will never appear on an exam paper, so just using them can waste time, resources and – most importantly – energy. By having the specification, any ambiguities about the material covered can be clarified. Knowledge of the specification can also make it easier to catch up on missed lessons to avoid slipping behind.

3. Watch where you’re sitting.

Ensure you’re in a comfortable position. I used to get back pain from revising on the floor rather than sitting at my desk! Remember to readjust to avoid stiffness and try to stay as active as possible outside of studying.

4. Keep notes clear and concise.

Beautiful notes may look fantastic in your Snapchat story; however, they take a lot of time and might not contain all the necessary information. This could mean there is an over-expenditure of time and energy when simpler notes would suffice. This becomes especially true the closer it gets to exams. Trying to write out gorgeously illustrated guides to each scene in “Romeo and Juliet” the day before an exam will not work! It just causes burnout. Writing up quote maps for themes and characters would be less pretty but far more effective.

5. Make a plan but remain flexible.

Planning tasks in small increments can help to conquer obstacles while studying. So, rather than putting “Biology” on a study plan, put “Biology: structure of a human cell vs. structure of a plant cell: comparative bubble map, 20 minutes.” This means that what, how and for how long a task needs to be done is immediately clear. This is highly beneficial: it ensures all work is done to the specification as well as helping if brain fog strikes. However, flexibility must be maintained. If rigidity remains, then a flare-up could be brutal to the regime of studying. Including rest breaks (20 minutes of every hour) can help to ease this. Rest days should also be scheduled to avoid burnout. Another way to plan is to use Eisenhower’s Urgent/Important Principle, which aims to evaluate the relative priorities of tasks.

6. Listen to foreign or instrumental music.

When I get brain fog while studying, I find that music helps to drown out some of the static. However, listening to music in your native language can be incredibly disruptive. I used French music when I wanted to hear someone singing but didn’t want to get caught up in the lyrics. Maître Gims, a rapper, was particularly fun and easy listening. There were also days when the sound of anyone’s voice – no matter which language they were speaking – hurt my head, but I didn’t want to study in silence. Then, I used classical music. There are so many freely available playlists on apps like Spotify. Classical music is also useful as it gives the impression that you are incredibly erudite!

7. Listen to white noise or other repetitive sounds. 

The use of white noise is another option; white noise generators can be bought online or the sounds can be found on YouTube. I tend to use white noise when I have painful headaches which are worsened by unexpected sounds. If white noise feels too emotionless or clinical then waves, storms or rain sounds are other options. They can “cushion” any other noise. This helps to avoid distractions.

8. Get online.

It is shocking how many online study resources are available. For example, TES is an online community where teachers share resources; fortunately, you don’t have to be a teacher (or even say you are one!) to make an account. Thousands of worksheets, revision notes and lesson plans are available. This can save time, but remember that merely reading others’ notes will not help you to fully understand the course material!

Twitter also has a thriving network of lovely teachers who answer queries and share their materials in order to help students. If you want to maintain a social media study-life balance, it may be worth creating a school account to follow these teachers on and then keeping your personal account for memes.

YouTube is also a fantastic educational resource. Students and teachers post videos covering the specification, going through mark schemes in detail and sharing their exam technique tips and tricks – this is especially helpful if you are not in class often, as you can gain a similar learning experience. An extra tip: when on YouTube, watch videos once on double speed with captions, then skip to places you didn’t understand on single speed – it functions as a great review of work!

9. Find out what your educational facility can do for you.

Whether it’s extra time or rest breaks in exams, a private room to work in or a “time out” card, schools typically have options available to those who ask. In the UK, schools are legally obliged to treat disabled students equally under the 2010 Equality Act (similar protections exist in the USA) – knowing your rights can help, especially if schools are reluctant or simply do not know how to help.

10. Don’t be afraid to ask for other help.

Teachers and support staff are there for a reason: to help you to learn. If you feel overwhelmed, communicate with them (writing an email often makes this easier as it is recorded – which can be very useful when dealing with a difficult teacher).

11. Remember that health is more important than studying.

Health, whether mental or physical, should not suffer as a result of studying. Take breaks, look after yourself and remember that grades will not impact you forever; there are always alternative routes.

This post originally appeared on A Side of Spoons.

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