If you work with, know, or love someone who lives with chronic illness and have not heard of spoon theory, I encourage you to take the time to read up on it now. Spoon theory is a helpful tool that illustrates the ways that the choices we make impact our energy and well being, often in ways that a person who is well doesn’t even have on their radar.
A quick disclaimer * I am not a doctor or medical professional in any capacity. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor for any questions and concerns regarding your health*
Now that that’s out of the way, here are some tips and tricks I have learned for making my days with POTS, MCAS, and EDS a little easier.
- SALT- The first thing my POTS doctor told me to do was increase my salt intake. I need to take about 10 grams of salt a day (two teaspoons) in addition to what I normally put on my food. The recommendation was specifically for Pink Himalayan salt. Pink salt contains minerals and trace elements like calcium, magnesium, potassium and iron, which many POTsies are deficient in. I buy my salt in bulk at Costco or on Amazon. Because downing two teaspoons of salt isn’t exactly palatable, I take salt in the form of a capsule. You can buy pre-made salt capsules here. Or, you buy empty capsules and fill them yourself here, and here is a capsule holder. My husband and I make them ourselves because it is a lot cheaper than buying the premade ones.
- WATER- Right up with salt in POTS management importance is water. I strive to drink a gallon or more of water a day. The combination of salt and water helps to increase our naturally low blood volume. Sometimes water by itself makes me vomit. On days that I am more nauseated than is usual for me, I will juice a grapefruit or an orange and add that to 28oz of water, along with half a teaspoon of maple syrup and 1/8 teaspoon of salt. It’s a relatively easy to make electrolyte drink, without the dyes and junk. If this is too much work to do daily for you, you or a helper can make a big batch on the weekend and store the pre-made mix in your fridge for all week long electrolyte boosts.
- SET UP YOUR HOUSE TO WORK FOR YOU-
- I have a comfy chair that reclines in the main room of our house so I can participate in life even on bad days. Our house is open concept, which is also nice. I can see what happening in the kitchen and be involved with meal times without needing to be at the table. If the kids are playing downstairs and I want to participate, there is a big comfy couch I can rest and prop my feet up on. Our kitchen has stools with adjustable heights so I can sit to cut, prepare and cook food. We have two so that if I need it, one can stay in the bedroom for use while getting ready in the morning.
- We buy duplicate items. Each bathroom has its own cleaning supplies so I don’t need to waste energy carting things back and forth or hunting down items.
- One of our vacuum’s died 😦 but previously we had one on each floor so I didn’t waste energy or hurt myself carrying it up and down the stairs.
- We practice minimalism (I know I just said we buy lots of duplicates but…). If something doesn’t get regular use, it doesn’t stay in our house. The maintenance is not worth my time or energy.
- I use a reacher grabber to help me pick things up off the floor. Not having to bend over to clean up means I don’t have to worry about my body adjusting to the shifting blood flow. It saves me energy so I can stay on my feet longer an helps prevent headaches from shifting posture and neck instability
- In moments where I am more sensitive to sensory input I use these headphones to muffle sound and make it more bearable. I am particularly sensitive to sound and movement. I generally need the headphones and to close my eyes and be still. If smells bother me, this mask is very helpful. It’s also great during cold and flu season to help keep me virus free, and you can find it in multiple colors and patterns.
- Buy a SHOWER CHAIR! I always shower at night. If I shower in the morning I spend the whole day recovering. Showers create the perfect conditions for a POTS storm. The heat and holding your arms above your head to wash your hair make your blood pool down to your feet real fast. Having a shower chair can save you energy, help lessen the effects of blood pooling, prevent fainting, and in the event that you do faint, you are less likely to injure yourself if you are already sitting down. Choose a shower chair that has a back to it, so you have support if you faint. I don’t have a recommendation for a good shower chair. I am on my second one. The first was a bamboo shower stool, and it got moldy quickly. The one I have now is a standard medical shower chair, but it needs to be adjusted pretty often or it gets unstable. SO, if you have a good recommendation, let me know!
- Use MOBILITY AIDS if you need them. I started using a cane because of balance issues. Having a “third leg” makes it easier to catch yourself when falling off balance. I like the collapsible kind that fit easily in a purse or backpack when not in use. These also come in fun colors and patterns, so your cane can match your style. I upgraded to a rollator when knee instability became an issue and as fatigue worsened. Having a seat when you need one is really nice. I was able to get a prescription for a wheel chair from my doctor which has also helped so much. It allows me to participate in activities like going to the aquarium with my kids. If you don’t have the option for insurance to cover a chair for you, you can also find these on amazon, or even at walmart for reasonable prices.
- INTERMITTENT FASTING. I love intermittent fasting. I fast 16 hours a day and have an 8 hour eating window. I have a lot of digestive pain and issues. Having a 16 hour break from food give my body enough time to prepare to eat again the next day. I have less bloating and pain. During the fasting hours I still take all my medicine, salt and drink plenty of water. I also count calories to make sure I am eating enough food. I love intermittent fasting for weight loss. I have about 30 pounds of baby weight still hanging on to me, which is a lot of extra weight for unstable joints to be carrying. Intermittent fasting has helped me lose 10 pounds so far, which is pretty amazing because I am very limited in the types of exercise I can do. Which brings me to my next point….
- PHYSICAL THERAPY. Physical therapy is so important for people with EDS. It increases our proprioception, our sense of the position of our body parts and the effort employed during movement. A physical therapist will help you strengthen your muscles to lighten the load of your joints and ligaments, and they will help you do this correctly, so you don’t worsen your pain and instability. We need to be taught what a healthy range of motion feels like before we try working out on our own. After having a bumpy start with physical therapy, Steph recommended this book to me that she has been working through with her PT. It isn’t perfect for each person with Ehlers Danlos. It gave my therapist and me a great base to start from, and a pretty comprehensive overview of the syndrome and how it effects the body. My therapists work with the protocol in the book and add and modify exercises to better suit my body’s individual needs. They also do soft tissue work (think little massages), and teach me how to realign my joints when they sublux (subluxation is partial dislocation).
- EXERCISE is the most valuable thing you can do to improve your quality of life for both POTS and Ehlers Danlos syndrome. This is so hard because fatigue, exercise and heat intolerance are some of the most disabling symptoms we have. A physical therapist can help you with building up enough strength and endurance to be able to do a little bit of exercise everyday on your own. Cardio is especially important for POTS. Recumbent biking, rowing and swimming are good low impact cardio options. Start small. 5 minutes a day is better than nothing. If five seems like too much then do 3 or 1. Do something. It helps. I have this bike, which tracks time, distance, and heart rate. I really love it.
- DIET. Diet will likely be a bit different for each of us, as we are sensitive to different things. My POTS doctor recommended a gluten, dairy, and sugar free diet to me. Having allergy testing and working with a nutritionist are the next steps on my to do
- WE HELP OUR KIDS TO HELP THEMSELVES
- Our kids cups, plates and bowls are kept in low cabinets where they are accessible without adult help.
- Kid friendly snacks are kept in low cabinets as well. We love fruit pouches, which are healthy and don’t create dishes, as well as fresh fruits, and goldfish which are pretty easy for them to clean up if their is a spill.
- They each have their own water bottle which is always accessible to them and they can fill on their own.
- At 2, 4, and 5 they all are expected to clean up the table after meals. Our 2 year old can bring her dishes over to the counter and if they don’t need to be rinsed can put them in the dishwasher. The older two can rinse their dishes and put them in the dishwasher by themselves.
- I made them a to do list, with pictures, that they are responsible for each morning. This is so helpful. They know each morning what I expect of them and they have a visual aid to help guide them. I can use my energy to do more fun things with them instead of fighting with them to clean their rooms.
- DON’T BE AFRAID TO ASK FOR HELP. I am still working on this one. It is hard to have to depend on other people so much. It is hard to feel like a burden. It is hard to be sick. It is hard to work up the courage to ask for help and then be let down. Do it anyway. Your health and well being are important. You matter. Sometimes we can’t heal on our own. Sometimes our little ones need more than what we can give them ourselves. That is ok. You are still awesome.
I’ll have some more tips and tricks to share in my next post. What are some things that you guys find helpful?