Bad days are bound to happen with Postural Orthostatic Tachycardia Syndrome (POTS) and other chronic illnesses, no matter where you are in treatment. It’s hard to accept bad days when you’re amid a slew of them. It’s even harder, in my experience, to get through bad days after a long spell of good days.
When you’re feeling good, great even, it can feel like a blow to your confidence when your symptoms hit you hard out of nowhere. You may feel defeated. You may feel sad, or you may feel anxious. Maybe you even scold your body for betraying you. Whatever you may feel, you are allowed to have that reaction. It’s normal. Let yourself react.
The key is not dwelling on that reaction. Part of getting through symptom flare-ups is first accepting that you’re having a flare-up. Acknowledge that the day ahead is probably going to suck, forgive yourself for the impending suckiness, and do your very best to push through it regardless.
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Living life on a chronic roller coaster
Living with POTS–or any chronic illness–is like being on a roller coaster you cannot get off of. Some days are fantastic, some days are just okay, and some days are downright terrible. Symptoms ebb and flow; there is no rhyme or reason to it.
So when you’re riding up to those highs, enjoy them wholeheartedly! When you’re coming back down, don’t get discouraged, and don’t give up on yourself. Part of having a chronic illness is learning to accept that setbacks and not-so-hot days are a normal part of having a lifelong condition. Once you can accept that you’ll have bad days, you can start better preparing for them. That way, you have a plan ready to help yourself overcome them when they hit.
I always tell myself: Let the highs of your good days carry you through the lows of your bad days.
Getting through bad days with POTS and chronic illness is difficult physically, mentally, and emotionally. If you can pin down the things that make you feel better, then do them! Start making a list of things you’ve done in the past that help. Then, when your symptoms rear their ugly heads, start ticking off those items on your list. Even if that something is taking it easy and resting.
If you wallow in self-loathing, frustration, disappointment, or whatever negative emotions bad days trigger for you, then you’re going to feel like crap AND be miserable. I know, because I used to do this. I still do, but I’m better about changing the frequency when I’m stuck on the negative Nancy channel.
For me, focusing on the positive and what I can do to help myself truly does make me feel better. Practicing gratitude is an excellent tool for overcoming bad days with POTS and chronic illness. Being mindful of what I can still do despite my condition makes it easier for me to detach myself from the negativity brought on by bad days. From there, it’s easier to jump into my plan of what I can do to help myself feel better.
Tips for getting through bad days with POTS
Often times, my POTS symptoms are caused by low blood pressure or a lack of blood flow to my heart and brain. So, for example, when I start to feel weak, short of breath, and lethargic, I’ll grab my blood pressure cuff (Omron 7 Series Wrist Blood Pressure Monitor) and take a reading. Most of the time, my blood pressure is, indeed, low. The fix? I chug a glass of water and eat some salt. Then, I wait 20-30 minutes, not always patiently. But most of the time I’ll feel some degree of relief as my blood pressure rises.
I also know that a nap, or simply closing my eyes for 15-30 minutes can do wonders to refresh me. However, that’s not always feasible. You can’t lay down in class or sprawl out on the floor of your workspace. I mean, you could, but I can’t promise that you won’t cause a scene wherever you are.
Exercising–as long as I don’t overdo it–also helps me feel better, both physically and mentally. Although, sometimes it’s really tough to get myself to do this. The last thing I feel like doing when I’m having a bad day with POTS symptoms is exercising. On my bad days, sometimes I swear I’ll just fall over from exhaustion or lightheadedness if I stand up. My body will feel like it weighs as much as an elephant. If you have a chronic illness, you know what this kind of full-body fatigue feels like! But, if I can force myself to get up (slowly, of course) and get moving however I can, chances are, I’ll feel better.
Exercise is also great for boosting your mood, increasing circulation, and improving cardiovascular fitness, which are all things that can help with POTS symptoms.
When the worst of the worst days hit…
Now, I’m not naive. I know that sometimes you absolutely cannot do anything to feel better. Those are the worst of the worst days. When they hit, you just have to buckle down and ride them through, even if that means you cannot get out of bed.
Trust me, I’ve had plenty of bad days with POTS like this, and I know I’ll still have them occasionally. I’ve missed classes, taken sick days off from work, and canceled plans because of these days. It sucks. Tremendously. But you have to put your health first and take care of your body, even if it just needs rest.
Be open and honest with the people in your life (professors, bosses, parents, significant others, friends, etc.). Come up with a plan so that you can give your body what it needs while also still fulfilling any important commitments. See if you can work from home. Ask a professor for an extension. Reschedule social plans.
If you’re open and honest about your condition, while also remaining positive and focused on ways to work around it, people tend to be more responsive and accommodating–at least in my own experience. That doesn’t always mean things will work out, but hey, it’s always worth a shot to try.
Getting through bad mental and emotional days
Bad days with POTS and chronic illness don’t have to be just physical either. Sometimes, you can have bad mental or emotional days too, because let’s face it, dealing with a chronic condition is overwhelming. Plain and simple.
Keep another list handy of failproof things that make you happy. Some of my favorite things are writing, exercising, baking, going for long walks, having a girl’s night or date night, taking a bath with scented candles, eating chocolate (duh), and finding a quiet spot in nature.
Figure out what makes you the happiest and surround yourself with them when you’re emotionally or mentally taxed. Even if they’re simple things, add them to your list! Simply putting on a face mask, lighting a candle, and streaming The Great British Bake Off on Netflix the other night made me feel phenomenal. It also gave me wildly ambitious ideas about attempting to bake a loaf of gluten-free bread, but I digress.
After all, this is part of the recovery process: figuring out what’s causing your symptoms and cleverly coming up with ways to ameliorate them. The recovery process is a learning process. Be curious, be creative, and be patient with yourself. Strap yourself in for the roller coaster of good days and bad days. In time, with the right knowledge and treatment plan, the ride just may smooth out along the way.
Life with POTS and other chronic illnesses isn’t easy. But it can still be a satisfying one if you choose to find the good in each day–no matter how tough it may be at times to find it.
Check out some additional POTS self-care tips in my post about my recent trip to Cleveland Clinic.
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