To give a quick run down, I have h-EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome).
Ehlers-Danlos Syndrome is a rare chronic disease that affects one’s skin, joints, and blood vessels. h-EDS causes me to have issues with my collagen, making me suffer from chronic fatigue, achy joints and muscles, easily bruised skin, and more.
The National Institute of Neurological Disorders and Stroke states that POTS or Postural Orthostatic Tachycardia Syndrome is an orthostatic intolerance condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position (NINDS).
My lifestyle completely changed after I was diagnosed with POTS and h-EDS. Now, I constantly need to have electrolytes, carefully get up after long periods of rest, monitor myself during heat, and adjust my day-to-day activities depending on how faint I feel. I have had to work hard to develop skills to get me through the day a lot easier. So, I wanted to share some of them with you all so that they can help you too!
- Carry electrolytes with you all the time
- This is super important since electrolytes can come in handy whenever you feel faint after extreme heat. It can also be used to boost your salt levels. Since there are a lot of different brands out there, it’s ultimately up to your taste buds. But if you tend to be more dehydrated or faint, I would say to go for ones with larger salt amounts. Drip Drop and Liquid IV are very trusted brands. If you just want a little electrolyte boost, I recommend Propel (which is also sold by the bottle in the SDSU markets) by Gatorade. They’re tiny little packets that you can carry on the go and add to water, whenever you need. You can get all of them on Amazon for relatively reasonable prices. If you’re not great at getting those drinks in, you can also take salt tablets to up your salt intake. After I fainted for the first time, I combined the two and it made me feel a lot better.
- Setting boundaries
- Setting boundaries is essential in all areas of your life. But when thinking about chronic pain, they are extremely valuable and necessary. We’ve all had the experience of being out when something starts flaring up and you have to go through that painful inner monologue of whether you should say something and go or suffer through it in silence. And let me tell you, you are your top priority. If you are in pain and it’s causing you discomfort to keep up with the activity you’re currently doing, pause and take a break! Listen to your body! People should be understanding; if they’re not, they don’t deserve to be in your life. Let people know what’s going on and keep them in the loop. Ultimately you know your needs and capabilities, so don’t let others dictate how you treat yourself.
- Working out
- Depending on the type of person you are, you might either love working out or view it as your worst nightmare. You don’t have to be an absolute gym rat, but adding some good exercises into your daily routine can help boost your mood as well as help with some of your pain. I have found that yoga has been super helpful because you can go at your own pace (depending on the class) and it provides a lot of good deep stretching. Because of my EDS, I need to gain more muscle to compensate for my loose ligaments. Weights with some light cardio work best for me. If you have similar problems, I highly recommend signing up for yoga classes at the ARC or a local gym. Sometimes you need to be held accountable and I know that if I pay for it, I will go. If the gym scares you (which honestly me too), I highly recommend looking up YouTube videos of yoga or pilates workouts. There’s a good chunk of wellness creators who tailor their content based on their conditions so if you want something a bit more tailored to you, I highly suggest looking out for those types of channels.
- Bring pain medication and braces
- It may just be me but sometimes I’ll be walking to class and then my knee will go out and I’ll just sit in class in pain wishing I had something to make it better. Once I realized it doesn’t take much space to include some braces and pain medication in my bags I made sure I kept them in close proximity. If I travel I bring them even if I’ve been feeling great. I have random flare-ups so this just helps prevent me from making them worse before I can go home and take care of them properly.
- Find a community
- Although it may seem like no one understands you, some people have very similar experiences and may have other advice geared toward specific issues. I joined a discord server for other disabled college students (specifically at UC Davis which is where I was at the time) but there are a ton of forums. My mom joined a Facebook group called College Students with Dysautonomia which has not only college student perspectives but also parents and professors who share things to get accommodation wise or what to ask for, how to best navigate campus areas, etc.
All in all, I am in no way perfect and taking care of myself but learning how to manage chronic illness is a learning process. If you have any strategies you have found helpful, feel free to comment and let others know! Even if you don’t have chronic illness/pain, you can take these tips to take care of yourself and be a strong ally for your friends and family who do. We can all learn from each other and our personal experiences so listen and receive. Take care of yourselves!