Things I Wish I'd Known When Newly Diagnosed With POTS Part 2

In my first post I talked about the need to keep searching for the right doctors, compression gear, online support groups, realistic timelines for measuring progress, the lay down test, and salt. I’m pretty much just going to pick up where I left off with other things I wish I had known when I was first diagnosed.

7. Setbacks are expected, so it’s important to know how to handle them. One of the most common setbacks I’ve experienced has been acute illnesses. If I get sick it almost always takes me longer to recover than my peers. It is also harder to keep up with my POTS protocols like exercising when I’m sick. Sometimes your body needs rest in order to heal and you have to accept that. But then, when the acute illness passes, you have to build back up to where you were. Sometimes it's a few weeks' setback, sometimes it’s more. Some things can be avoided, by all the normal things we’ve been hearing about all our lives; wash your hands, avoid being around sick people, don’t share drinks, practice food safety. But some things just can’t be avoided and so it’s helpful to accept that early on.

Talk with your doctors about how to approach these types of setbacks. A physical therapist can advise you on gentle exercises that can be done laying down to avoid muscle atrophy without stressing your body too much. There are medications that can be used on an as needed basis. If you are very sick your doctor might recommend IV fluids. The biggest piece of advice I’d give is to ease back into activities in a gentle but persistent manner. Don’t push your body super hard but then also don’t be discouraged when your body gets very tired from what feels like a small amount of activity.

8. Air conditioning isn’t just a luxury item for POTS patients. It can be a game changer for us. One of the main problems in POTS patients is that our blood tends to pool in our lower extremities, which causes a symptom cascade (for more on that click here). When we are exposed to hot temperatures one of the ways the human body maintains a safe body temperature is to dilate veins and arteries. The idea is that with more surface area more heat can be released, but with POTS patients this tends to make all our symptoms much, much worse by allowing for even more blood pooling in our lower extremities.

Air conditioning can be a miracle for us. In the heat of the summer I plan my day as much as possible around the temperature. I try to get outside early in the morning to exercise, garden, or just get some fresh air and sunlight. Then in the afternoon I try to stay inside in the air conditioning as much as I possibly can. I’ve found that for me it’s not necessary to set the AC to a super low temperature, I usually keep it between 72-75. It keeps the house at a reasonable temperature and then I avoid the shock of a large temperature jump when I do go outside.

When we first moved into our house we didn’t have central air, only a few window units. I ended up spending most of the summer locked away in our bedroom with the AC blasting. That was pretty hard on me socially and emotionally. It meant social isolation for several months of the year. My father-in-law was kind enough to help us put in central air a few years ago and I have been much healthier in the summers, both physically and mentally, since then.

There are some other options for staying cool in the summer that can help on the occasions you need to be out in the heat of the day. I’ve found these wrist things to be the most helpful (https://amzn.to/36vyYK3). You wet them down and then wear them on your wrists. Because your veins and arteries in your wrist are very close to the surface of the skin this is an efficient cooling method. As the water evaporates the bands stay cool. Plus when they dry out they are pretty easy to refresh by just dumping part of a water bottle on them. You can also try thin neck ice packs like this one (https://amzn.to/3cGTFq2). I’ve had to stop using them since having a neck injury that doesn’t appreciate being cold, but before that injury I found them helpful in the summer. And then there are more elaborate things like full ice vests that you can try but they are pretty expensive and I’ve never used one so I don’t know how well they work.

9. Find tools that are designed for people with chronic illness, like this Panda Planner. It was designed by a guy with chronic lyme disease and cancer. I’ve found it to be really helpful over the years. The best thing about it is how it forces you to make a short list of priorities to focus on. You really need to decide on just a few things that really matter. Plus at the start of each day there are sections for you to list out things you are grateful for and things you are looking forward to, both of which help to keep you in a positive mindset without trying to minimize your struggles.

I would also encourage anyone with POTS to consider a shower chair. You don’t have to get one of those ugly plastic ones, they make nice wooden ones out of bamboo like this one (https://amzn.to/39DXs5E). They can fold up when not in use to be stashed somewhere, but they are also nice enough looking to leave out if you have the space in your bathroom. I’ve found that little adjustments can make a big difference, like sitting while brushing my teeth. Remember, your body is working 3 times harder than an average person. Don’t be afraid to give it a break from time to time.

10. Speaking of taking breaks, when you are planning to be out and about, take seating into account. With POTS in particular the hardest thing is often standing still. Walking around isn’t as bad because your legs are working which pushes your blood back up, but standing still allows for blood pooling. Before going to public places you can usually look to see if there are benches around. I remember my husband wanted to go to the National Aviary for his birthday one year and I was able to use Yelp reviews to see that there were benches in nearly all the rooms.

When I’m going somewhere that doesn’t have benches or that I can’t reasonably find out about I will usually just try to wear clothes I don’t mind sitting on the ground in. This is especially helpful at places like parks or on hikes. I don’t sit all the time but if I need to I don’t want to be worrying about staining my favorite light colored pants. You can also get small folding seats like this one (https://amzn.to/2MHKZF7) for times when you know you’ll be stuck in one place for a while. I’ve used one of these for waiting in line for a popular brunch restaurant or watching sports. That one weighs just under a pound so it’s not a strain to carry.

11. And lastly, there will be a grieving process with this. Don’t fight it. Your life is changed now. It’s not over and it’s not going to be all bad but it is going to be different. Grief is how we move through change and you will need to grieve this. I am happy with the life I’ve built so far. But it is not the life I had imagined for myself when I was younger. I’m a different person than I thought I would be. I had to grieve the life I thought I would have in order to fully step into the life that I actually have.

There are going to be things you miss out on sometimes. It’s normal to be sad about those things. You can and will find other ways to build a good life but that doesn’t mean you haven’t lost anything. Your life is going to be a bit harder and more complicated than many of your peers. Sometimes you’re going to approach that with a real ‘can do’ attitude and sometimes you will feel really sad about that. Both of those responses are totally normal and healthy.

I think that everyone should go to counseling at some point in their lives. But people with chronic illnesses, especially those newly diagnosed, can benefit a lot from talking to a counselor with some experience in grief and loss. Let me be very clear about this: You do not need to have a mental illness to benefit from counseling. And going to counseling does not mean you are mentally ill. Seeing a counselor can both help you move through your grief and give you quality coping mechanisms for future stressful time periods.

This topic, similar to exercise, is one that I feel is often recommended by medical doctors but the reasoning behind it too often unclear, which can leave patients feeling like they are being gaslit or blown off. I don’t think you should go to counseling because your symptoms are all in your head, on the contrary I think you should go to counseling because your symptoms are very real and now you have to learn how to adjust parts of your life to them.

I hope these things are helpful to someone out there who is just learning how to live with POTS. It’s a big adjustment but over time many of these things will become second nature to you and you won’t have to think about them that much. In fact I needed help from my husband to remember several of these things because I just instinctively do them now.