How do we handle a chronic illness?
We let go of expectations and we can be present: how do I feel today? What can I accomplish today? The difference is, we have no judgment for what we can’t do (that’s where we often fail) and we have no unrealistic expectations. When we live with a chronic illness, we ask what we can accomplish today, we celebrate the successes (no judgment in the perceived size), we notice and observe how we are doing, and we keep moving forward. We don’t lie about how we feel. We don’t over do it if we can avoid it. And we notice the gifts given to us each day because of this major life change.
One gift for me? I spent this school year teaching my students how to have compassion, grace, and empathy. I had to be honest with them about how I felt, and then let them learn how to navigate it as a class and as human-beings. They had to get used to having a substitute every Wednesday. They had to learn how to be independent when I couldn’t move around the room and help them. I had to learn how to love and care for them without relying on my high level of energy that I used to give. We grew a community and they learned how to care about someone who is ill. It was a gift.
These are small gifts and my gratitude is not manufactured.
So, I will talk about all that I do to manage my POTS symptoms. All of these things have been small gifts given to me by someone who cares about people like me who deal with Dysautonomia.
I have included links throughout to help you find articles, products, and resources that I have written about.
Lifestyle and Mindset Changes
Get a Knowledgeable Doctor
I have heard so many sad stories about women with POTS who have been mislabeled with all sorts of psychosomatic symptoms and mental health issues. POTS is a very under-researched and little-known illness and many doctors push patients to the side when they present their odd myriad of symptoms.
It is very important to find a knowledgeable doctor who understands the nature of POTS and the symptoms and knows how to provide the physical and emotional care and resources that are needed to manage this illness.
I have been working with Cleveland Clinic for about a year now and I have been blessed with some of the best doctors in the field of Dysautonomia. I attended a shared medical appointment where my doctor educated a group of us on POTS and the reason for many of the symptoms we experience. We were able to talk about our experiences and get explanations for why we experience what we do. We were told our symptoms were real.
I now work primarily with a nurse practitioner who will sit with me for 45 minutes to an hour talking through all of my symptoms and creating a plan of care with me. I can also message him anytime on MyChart to talk about medications and symptoms. He willingly gave me FMLA for work because he knew me as a patient and knew what I would need to be successful.
Don’t waste your time with doctors who don’t give you the care you need. I have to drive 6 hours now to see my doctors in Cleveland, but it’s worth it for the care I receive (and I only have to do it twice a year.) We need to create a community that shares doctors, hospitals and resources that have helped us in our care so that we can pursue the best care possible.
Sit. But not too much
If you have Dysautonomia, you know this well. Standing for too long sucks. I don’t know what you feel, but after awhile my body just can’t hold itself up anymore. A lot of you are wheel-chair bound or you pass out if you’re vertical for too long. For me, my feet and legs get purple and itchy and my heart pounds. I try to limit my standing, but my doctor also told me not to sit too much, that causes blood pooling as well. So, I like to sit most often, take breaks to stand (I usually hit my stand goal on my Apple Watch, which means I stand every hour at least. But on the days I work it’s way more.)
Either way, having a chair around has become more necessary and I’m ok with making sure I get to one if needed.
This one is tough. Not only is it tough while exercising, it’s tough to get the motivation to do it. I used to run half marathons and run shorter distances for fun, so I do love exercise, but the level of fatigue I have makes it hard to have the motivation. Honestly, I feel the best on a recumbent bike, even though my doctors at Cleveland Clinic who put together my cardiac rehab program say I should be exercising more and on a treadmill by now, I’ve taken it slower. They said I shouldn’t push myself and I haven’t. My doctor also recommended yoga to relieve pain and stress and help with exercise. I do enjoy slow yoga that doesn’t include tough position changes.
When you have Dysautonomia, you need to think of your whole life as exercise. Even the smallest things like walking a couple flights of stairs could be exercise. So going to a gym isn’t always necessary. But it is proven to be one of the best things we can do to relieve some symptoms. Ask your doctor about a cardiac rehab program, and if at all possible, do it with a clinic that knows POTS well. Working with Cleveland Clinic has made all the difference as they have created my symptom management/treatment program as a whole.
Not much to say here. Having a chronic illness physically and mentally slows you down. It’s a good thing. Our world glorifies moving fast and being busy. I’ve put less on my schedule and it has been so important to my healing.
Work Less, Stress Less
This school year, I was staying late at work more often, but I also didn’t work Wednesdays and that has been a life saver. I was on the verge of quitting because I couldn’t handle work anymore—physically and emotionally. Having a day off in the middle of the week has changed everything for me. I am so grateful to have a job where my principals and school board have made that happen.
It’s important, when hit with a chronic illness, to consider how your job is affecting your health. We make too many sacrifices and cut too many corners with our jobs. We try to make it work and push ourselves. But what if we took an honest look at whether or not our job is contributing to our health or not? Can we make a switch or change in our career and trust that it is for the best?
Usually we will cut every other thing out of our lives before cutting away anything at work. We don’t want to miss a day. We think we are so important. But the stress is only making the illness worse and we need a serious wake up call. We are replaceable. Our job isn’t number one.
I stopped teaching after finishing this school year. This was partially because it wasn’t good for my health and partially because I feel called to a different career path. I’m scared to head into seminary and a part time job in the fall because I don’t know what I can and can’t do, but I have the support system around me that is letting me figure it out.
Maybe you need to make changes in your job and school. Be honest and open about your fears in it and let people care for you in these decisions.
We. Need. People.
You. Need. People.
Whether you’re incredibly sick or wonderfully healthy.
We. All. Need. People.
We have to seek out community. I’m so thankful to have other people who are dealing with similar stuff as me, but we have to be careful. Sometimes we can perpetuate bad thoughts or attitudes about our illness when we get together. We need to create a community of love, encouragement, and solidarity, but we cannot bring each other to the pit.
It’s also important to create community with others by letting them in. I don’t love talking about my illness with others because I fear being seen as a complainer. But, it truly is amazing what happens when I open a door of vulnerability to share my struggle and I’m met with prayer and love and strength. We can’t be afraid to lean on each other. We can’t be afraid to take off our “I’m fine” masks. Illness is so tough. We need to experience it with people.
Maybe you don’t have a spiritual connection at all— that’s ok to acknowledge where you are. But I challenge you with the question: is it working for you? The single best hope, strength, and gift in my life is my relationship with Jesus. Jesus isn’t just a far off police officer who is pouring guilt on my every mistake. Jesus is a man who came to show just how much he loves us by getting into our messy lives and dying to take the mess away.
We are messy and broken and weak and we need a connection to the Creator who is none of those things. My prayers aren’t formal and I don’t worry about the right words. I don’t always pray for healing, but I pray that my illness would be used to help other people in their search for love and hope that can be found in Jesus. If I have to have POTS forever so that other people can know the love and strength that Jesus offers, so be it. If I am healed of POTS so that people know the love and healing of Jesus, so be it. But I’m open for my life to be used however necessary and I’m always open with my connection to God.
I pray when I’m angry, hurt, confused, lost, excited, thankful, hopeful, and loved. Jesus shows me that I’m not alone and that his strength can be my own.
Ask for Help, Be Honest
One of the single hardest things for us who deal with chronic illness is to ask for help. Usually, this isn’t because we struggle to ask for help so much as it is we struggle to ask for help again. With a chronic illness, asking for help isn’t a one time thing. It’s an every day thing. And it brings fear and insecurity. We feel like a giant burden. We feel weak. And we assume everyone is sick of us asking.
None of that is true.
And if it is true, those people aren’t who you want in your tribe anyways.
As I said before, we need people. Everyone needs to ask for help. We function better when we call on others to use their gifts in our lives. What gifts can people use in your life to help you and to flourish in themselves? We flourish when we use our gifts. Let people flourish by helping you.
And the second part is to be honest. I had to have an honest (and tear-filled) conversation with my husband about the future. I’m afraid to be a mom because of the amount of times I’ve had to tell my nieces or my students “no, I can’t” to being active or playing with them. I’m afraid of seminary because I’m afraid my symptoms will keep me from succeeding and professors won’t be understanding of my illness or possible absences. I’m afraid of trying to get a new job where no one knows me and what I go through and I have to start all over again with them getting to know what I can and can’t do.
He could never help me if I didn’t step up to be honest.
We need to honestly say “no” to the things we can’t do and we need to trust that we don’t need to carry the guilt of saying “no.”
The world needs to learn from our weakness, our lack of busy-ness, our willingness to say “no,” and our consistent requests for help. Don’t buy into the lie that those are bad things.
Do the Things You Enjoy
Don’t forget to do the things you enjoy. They just may look different. I love to be outside, but I can’t run anymore. I like to find ways to be outside without having to be too active. I love to write and read and I am able to do that, so I make time to do it.
When we make time for what we love and we find ways to make it work, that brings real joy.
Some things in our lives we have had to shelve or let them die. That’s ok. Passions and interests can come and go. What is something you can enjoy in your life now, rather than focusing on lamenting the loss of what you used to do or can’t do anymore?
Medications and Supplements
Salt pills—Vitassium Salt Pills
I really started to dislike taking these because they brought on intense nausea, until my cousin shared these new pills made just for Dysautonomia patients! You get a discount if you have Dysautonomia and there are many options to getting your salt. I can take them on a completely empty stomach and I’m fine. I’m getting more salt in now because I don’t have to worry about taking them with food, and I don’t have to over salt my food anymore. I’ll post the link below so you can join the club (literally) and get that discount and buy these.
They also contain potassium in them and I need extra potassium because of a medication I am on. Win-win! I buy 5 bottles at a time and keep them in every area of my life so I’m never without them. I take 2-4 pills with every meal to be the equivalent of 3-5g of salt a day. Try them and tell all of your Dysautonomia friends.
I was hesitant to be put on medication at first. My doctor held off until I was asking for help on how to get through my job. Once I learned that a primary cause of many POTS symptoms is the amount of adrenaline pumping through your body to try to make up for your Autonomic System not doing its job, I learned that a Beta Blocker would really help.
One symptom was anxiety. I’m not sure what an anxiety attack is like, but there were a few times when I couldn’t stop crying as I sat in my car outside of my work. Working and having this syndrome became too much. I couldn’t handle the stress and I had a lot of anxiety. This beta blocker calmed my heart rate and this slowed my adrenaline response and my anxiety mostly went away. I hope one day I can get off this medication, but I will say it’s nice that my heart rate isn’t jumping to 120-130 bpm every time I stand.
I just recently started this medication, so I can’t share much wisdom on it yet. This is a steroid that is used to help me increase my blood volume and thus increase my blood pressure. I have noticed it is helping my heart rate spikes as well. I do feel somewhat better on this medication, but I don’t love being on a steroid. My first week of taking it I experienced some GI issues. The side effects seem to be gone now, but I hope I will be off this medication soon.
I know many POTS patients have been on it for years without side effects or complications, so it’s always up to the patient. I take this every morning with breakfast.
My doctor told me to take magnesium for muscle pain. What isn’t talked about very often is the pain POTS patients experience. It’s common to get coathanger headaches that cause pain in the shoulders and neck. Magnesium helps with pain and headaches and makes you a bit drowsy, so I take 400mg every night.
Melatonin has been a game changer. I didn’t realize that my disrupted sleep was due to the adrenaline response that we as POTS patients deal with. Adrenaline kept me up for sometimes an hour as I was trying to fall asleep. Then, I’d wake up at around 3:30 or 4, wide awake thinking it was 6:30 or 7:00 in the morning. And I couldn’t fall back asleep easily. I thought this was all just life, but learned that it’s a common symptom. My doctor recommended 10mg of melatonin two hours before bed and I’ve been sleeping worlds better now.
Eating and Drinking
Water — 101 oz Water Bottle
I probably get a comment on this water bottle every day, but it’s so helpful! I bought a 101oz water bottle from TJ Maxx, but this one is Wellness brand. I can see how much water I have consumed in one day and I don’t need to fill it up during the day. It really only makes sense when I’m home all day or at work all day, otherwise I recommend a more portable size. But I feel significantly worse when I drink less water. I get dizzy easier, worse headaches and sometimes more fatigued. I didn’t think water made a difference until I went a few days with less water and I really paid for it the next few days.
Ultima — Electrolytes!
Honestly, like most of what I do to manage symptoms, I do it without noticing a drastic change. I don’t think any one of these things works wonders for me, but combined they make me a functioning human. Electrolytes is one of those things.
I try not to consume products with loads of sugar or unhealthy ingredients. I honestly believe I feel worse when I do. I’ve noticed my heart rate rises and so does my fatigue. So when I found Ultima on Thrive Market I was pumped! They come in little travel-size packets in different flavors, you pour it into a 16oz bottle of water and shake—done! The best part is they are healthy and slightly sweetened with stevia instead of regular sugar. They’re delicious without leaving your saliva all cake-y from the loads of sugar in other sports drinks (you know that nasty feeling.)
I drink them any time, but try to when I work out, when I know I have a potential to be dehydrated, or that one time I had a terrible stomach bug.
I have found Ultima on Thrive Market, which requires a subscription (but I use Thrive for all my healthy pantry items since it’s so cheap compared to other health food markets). I have also found them at Whole Foods. But it may be in more places! Find it in the protein powder aisle in your health food store!
I think we undervalue what we consume when we have a chronic illness. This is usually for a few reasons: 1. It’s hard to have the energy to cook, so we usually eat what is easy. 2. Doctors usually recommend medication before nutrition. 3. It’s hard to keep up with a healthy diet.
Like I mentioned before, I don’t love eating unhealthy food with ingredients that have no nutritional value. (Or at least I don’t like to make that my regular eating habit. Because hello? Reeses every once in awhile?) I find that when I eat more processed food and a lot of sugar, my fatigue gets worse. I also try not to eat giant meals, but that’s hard to do sometimes. My eyes have always been bigger than my stomach. And I’m tiny.
I tried the paleo diet but was only perfectly consistent for about two weeks. Since then (July 2018), I have been eating loosely paleo. Why? I wanted to clean up my diet and it was easiest to go drastic with a focus on meats and veggies than it was for me to just pick one thing to eliminate. I needed it to be drastic to have more self discipline in eating and to gain more self control. I don’t want my eating to be about what is “good” or “evil” but what makes me feel good.
So, I still have significantly cut down on sugar, gluten and dairy and I’ve tried to focus on more whole foods. I’m just letting myself learn about food, cook new things and see what I like and what makes me feel good. Thankfully, I usually have the ability to cook without terrible repercussions. If you are able to cook, I personally love the book Eat What You Love by Danielle Walker. This is a paleo cookbook dedicated to delicious recipes that are relatively easy to make. I also follow @Paleorunningmama on Instagram or go to her blog: Paleo Running Mama Blog for other delicious and healthy recipes.
If you cannot stand to cook due to your symptoms, there are a few options for you.
- Help your roommate or significant other with something around the house that you can do, but let them take the reins on cooking. Anyone can learn to cook. Let them serve you in this way. You are not a burden.
- Use meal services that provide healthy meals. These can be expensive, but maybe it won’t be that different if you are hardly spending money on groceries anyways. I’ve found Paleo on the Go seems to have great options if you are in need of something healthy that you can throw in the oven or microwave. Walmart also has their own brand of healthy frozen meals that are Whole30 approved. I’m not one to stick to those specific fad diets, but they are healthy options for you!
- Use your good days to meal prep and put it all in the freezer for bad days. Maybe sometimes you do have good days and you can take advantage of them by making meals ahead of time that are easy to reheat.
- Get your groceries delivered or do a Click List. I personally used Shipt and loved it. I don’t use it anymore since we moved and I’m getting used to the grocery options around here. But now a days there are a lot of options for avoiding a tiring trip to the grocery store.
- Find restaurants that have healthy options and use those to buy your meals. Then, don’t spend money on what you don’t need at the grocery to balance out the cost
Give yourself grace when it comes to health. I’ve learned that it’s a journey. I’m better at cooking tastier and healthier things than I was a year ago. And I’ll be better next year. Don’t let any guilt creep in and let people serve you.
There are not a lot of things that I have added or subtracted to my life that singularly make me feel better or worse, but caffeine wrecks me. I noticed this before I was formally diagnosed with POTS. I could drink coffee in the morning and by lunch time I could barely hold myself up. My fatigue and weakness grows exponentially when I drink caffeine.
I started asking for decaf and it has made a world of a difference. I have to really make sure they hear me when I say decaf, and I have to ask them to remake it if they don’t (which is a learning curve for me. I’m so not assertive). If you haven’t tried to cut out caffeine yet, give it a shot. It might be worth it.
Products to Buy
Compression Tights/Socks/Pants (I have them all)
I love my compression socks from Comrad. They’re great quality and really do work well.
I have compression footless tights that are great for when I don’t want compression socks to show at my ankles when I wear pants. I do like them, but they are graduated, so the thighs are a bit baggy if they aren’t perfectly pulled up in the right place. The company is great for fun sock options. They’re called Vim & Vigr.
My best compression tights go from my feet to my Thigh-high compression tights. I notice a significant difference when I wear these after I wake up dizzy. Being a teacher, I need these every day. I haven’t been wearing them in this warm weather because they’re so hot, so I need to figure out a better option or just suck it up. For exercising, I have used compression pants that aren’t quite the same as medical grade compression, but they are helpful.
This is kind of sad, but I originally bought this Apple Watch because I made a deal with my husband. I was really missing running during my diagnostic journey and we made a deal that when I finally get a diagnosis, I could get the Apple Watch that has a GPS to track my runs (because I assumed a diagnosis meant an immediate cure). I finally got a diagnosis of POTS and decided to still get it more for the heart rate tracker. I use this watch for checking my heart rate on the daily. It also tracks my heart rate in exercise, so I can make sure I stay where I need to be. I have an app that lets me track my water intake as well. It’s helpful for those small things and I’m thankful I can use it for my health.
It’s important to take my blood pressure sitting and standing to monitor how I am doing, especially on the beta blocker. I use an app called iHealth to record the data from my blood pressure and I was able to print this data and bring it to my doctor so he could see data on how I was doing on my meds. I forget to take my blood pressure often, but it’s helpful data to collect when I can.
What about you? What products do you use that have helped with symptoms? What have you added or taken away in your life to help you feel better physically, emotionally and mentally?