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It’s OK to be OK

A lot of time has passed since I’ve updated my blog. Back in January, I was posting all the time. I was suffering constant flare-ups at every turn and I just couldn’t seem to get a consistent stream of good days going. Now, a week into April, I feel like I’ve found some balance. I saw a quote recently that said “If you happen to be doing OK right now, that’s valid too” and it really struck me as something that isn’t talked about enough in the chronic illness / chronic pain community. We are always hurting, always sick and often get hung up on the monotony of it all, but we forget to stop and practice some gratitude and praise for the moments of doing “OK” or even good!

At the beginning of the year, I did a bit of traveling and I feel like the more I started to move about, the more my POTS symptoms seemed to give me a break. It’s always been sort of a cruel joke that exercise helps POTS but the slightest physical activity can send someone into syncope, tachycardia, or any other set of unpleasant symptoms. But for me, I started small. My first trip to Houston, I used a wheelchair at the airport because my legs were so weak and I could hardly walk across the house, let alone across terminals and through security. People were giving me advice to try walking as exercise and it sounded like the most boring thing on the planet, but I started by walking around the block one time a few days a week. At first, I was so tired, I could barely put shoes on to get out of the door and by the time I got home, I needed to lie down and recover for at least an hour, just from a short 10-minute walk. But over time, I was less fatigued every time, and eventually I started taking my dogs out, each one on their own walk, once around the block for a total of two laps around my side of the neighborhood.  I continued to practice my standing and breathing techniques from the POTS Treatment Center any time I was faced with a flare-up. My trip to Tampa in February was wheelchair free and I was even able to walk around Busch Gardens for about an hour and a half. My stamina was much improved.

The thing is, the less I started to focus on being sick, the less sick I actually felt. I’d push my body a little more each week and listen to it tell me what it could and couldn’t handle. Unfortunately, my IIH headaches didn’t let up, so dealing with daily headaches was still a part of my life… But I slowly was able to almost overlook my pain and even call it a “distraction” or “discomfort” for majority of the time. This didn’t mean my life went back to normal. I’ve still had to maintain regular doctor’s visits, a specific diet, vitamin regimen, and my individualized treatments including nerve block injections, B-12 shots, biofeedback work, and I even added in Botox in March.

Every time I’ve had a breakthrough like this before, it has been tanked by a major setback. But that was before my body was stronger. I feel like I’m better equipped to handle these moments of clarity now. This doesn’t make me automatically discluded from the conversation of chronic illness or chronic pain. It doesn’t mean that I must turn in my community membership badge and hang up my blog. I still have a lot to say! And I think too many people feel better or go into remission and don’t tell their story, taking some hope off the table for the rest of us. I don’t know about you, but I always love reading stories of people triumphing over their illness, whether it’s a temporary reprieve, official remission, or all-out healing. One of my favorite accounts to follow is @avenlylaneinspire on Instagram. At one point, she was completely wheelchair-bound due to her POTS, but now she travels all over the world. And guess what? She still gets tired. She still suffers setbacks. But she pushes herself to enjoy her life the best that she can. Those are the types of stories I love to read about.

Whether or not my story is going to continue this upward rise, I cannot say. But I know that I will continue to put in the work and do whatever it takes to stay the course. And I won’t be afraid to tell people how great it feels to be doing OK, because even though I can now walk well across the room and get out of bed for the day, this part of the journey is just as authentic.

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How to Practice Standing

I was talking to a friend the other day – and by talking, I mean messaging through social media, and by friend I mean a stranger that I’ve come to know online – and she told me that she was going to physical therapy to regain the use of her legs. POTS has made standing and walking a challenge for her. She uses a walker to get around and needs the therapy to strengthen her legs which have become weak over time.  When someone has an orthostatic intolerance, like we do, they feel better laying down. Not only that, but our bodies actually function how they are supposed to when in the supine position. When we “POTSIES” stand up, our autonomic nervous system isn’t working properly: our blood doesn’t flow to the right place at the right time, usually meaning we faint, or feel like we are going to faint – also called syncope and pre-syncope. So this friend has pre-syncope every time she goes to stand up, just like me. I told her: standing is hard. I have to practice. Then came the question: How do you practice standing?

Learning to stand was Lesson Two at The POTS Treatment Center, right after breathing with your diaphragm. Now in order to execute Lesson Two, you must first know how to execute Lesson One. Breathing with your diaphragm sounds easy enough, but in order to truly Belly Breathe, you have to focus. And practice. How are you breathing right now? Hopefully you’ve experienced some yoga or meditation at some point in your life journey because the principles are similar, except here, we are breathing in and out through our nose, and we are breathing with one purpose: to relax. With POTS, our heart rate is out of whack. Think of it this way, we have the body of a sloth, with the heart rate of a hummingbird. So the purpose of the breath is to calm and regulate our heart rate. Inhale. Hold. Exhale. Inhale. Hold. Exhale. Inhale for four counts, hold for two, and exhale for six. Inhale. Hold. Exhale. Place one hand over your belly and one hand over your heart. Inhale. Hold. Exhale. Your belly should be expanding, your chest should not move. Inhale. Hold. Exhale. A relaxed person should take six breaths a minute. Only six. Inhale. Hold. Exhale. Inhale. Hold. Exhale. How are your breathing right now?

So now that you are aware of your breath, how does that help us stand up? Well for starters, you can’t just jump out of your chair and move. That’s wrong. With POTS, you know that’s wrong because the minute you are on your feet, you’re transported into outer space and suddenly there is no floor. When you feel gravity’s pull back to this plane, you realize that you stood up too fast. Again. So sit back down, and let’s try again. Scoot to the edge of your seat and take three deep breaths like we practiced above. Inhale. Hold. Exhale. On your final exhale, use the strength of your arms to push you up from the chair and continue to exhale as you push yourself into standing position. Now stop! Don’t take off walking just yet. Its time to breathe a little bit more before you start rushing forward. Your body is adjusting to being upright. Give it a chance to catch up. Take three more long, full, deep breaths. Inhale. Hold. Exhale. On your third and final exhale, you can take that first step.

If you have POTS, you’ve probably been told by your doctor to not stand up so fast. It made you roll your eyes, right? I know it made me roll mine the first time I was told “Well don’t stand up so fast” after saying I felt like I was going to pass out every time I got up. But the truth is, if the doctors took the minute to explain this method, or maybe used the phrase “give yourself more time to stand up”, maybe we wouldn’t roll our eyes. Maybe we would listen and actually practice standing. If you’re reading this and you don’t have POTS, I hope you got a glimpse of the small, subtle things that we must take our time for when living with this syndrome. Something as simple as standing up is often taken for granted. “Healthy is a crown that only the sick can see.” Be aware of how fortunate you are. And be gentle out in the world with others. You never know what silent wars are waging within them. You never know if that person taking a little longer on the plane has two more breaths to count through before they can stand up. Be patient. Be kind. And be thankful that you don’t have to practice standing.

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My POTS Diagnosis

I had something big happen on Tuesday and I want to talk about it. I was giving myself some space to process it all when I found out about my husband’s affair/new relationship, so needless to say, I got sidetracked. I put my own stuff on the backburner to once again mourn something that I should be done mourning. But let me back up and talk about the big news. Because I want to be done talking about him. I really do. This is about me. This diagnosis feels like the missing puzzle piece to all my questions. The missing link in the chain. The reason my body has betrayed me. The reason I’ve spent the last year bedridden.

It can all be explained by POTS/Dysautonomia. The fatigue. The lightheadedness. The tachycardia which feels like anxiety. Actual anxiety, which comes with rushes of adrenaline. The insomnia. The tremors. God, I’ve been looking for an answer about the tremors and no one could tell me why. Why would my hands start to shake uncontrollably and then subsequently my whole body? Now, I know. I haven’t been crazy.

So what does it feel like? Validation. Confirmation. Relief. When you’ve been living with unidentified symptoms as long as I have, you don’t see a diagnosis with fear. You finally get some peace with knowing. That’s how it felt when I got the diagnosis for IIH. Even though I looked it up and the articles all said “chronic”, a word that my doctor conveniently failed to mention, I wasn’t really overwhelmed by sadness or loss. I felt like a key had slipped into a locked door and I could finally walk through.

That’s not to say it’s all sunshine and rainbows on the other side of that door. There are challenges. Real problems that come with a new diagnosis. So now I have an orthostatic intolerance (a fancy way of saying my body doesn’t like it when I stand up).

So now what? What do I do with that information? I’m still navigating those waters. I’ve only had two appointments and we’ve focused on heart rate regulation and hydration. Next week I’ll work with a nutritionist. Although I’ve heard limited success stories, this is something that people can heal from. Right now, I’m overwhelmed by the week and feel too tired to try, but I know that’s just my fatigue talking. Tomorrow is a new day. And if tomorrow is no good, so is the next day… Now that I’ve found my missing puzzle piece, it’s time to do the work.

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POTS Treatment Center

Half a morning completely lost to sleeping off yesterday’s pain. I had painsomnia until almost 1:30am but finally was able to get some sleep after some pharmaceutical assistance. I hate resorting to that. I had gotten on such a good schedule, too. I was getting up around 8-8:30 every morning and getting to bed by 10:30pm. That schedule was working for me and I didn’t feel guilty about it. Sleeping until 10am? That makes me feel guilty. But when you have a migraine or pain hangover, sometimes you have to get that extra shut-eye in. My Apple Watch has been instrumental in telling me about my sleep cycles. I apparently don’t get very much restful sleep each night, only about 55-65%. I am definitely going to mention that at the POTS Treatment Center at my appointment tomorrow.

I am anxious about this appointment tomorrow. I saw a lot of reviews saying people felt completely better after a two-week program. That sort of result sounds like a scam to me. Am I just being pessimistic? I also noticed that they diagnose Chronic Fatigue Syndrome there, at least I think they do. Wow, if I could find out for sure one way or another if I have CFS I would be so happy.

A lot of people ask me: what comes from the diagnosis? And for me, a lot of it is just piece of mind. Answers mean everything. It’s justification. It’s validation. It’s proof that you aren’t crazy. I know there are things wrong with my body that haven’t been pin-pointed yet, and to have someone say “this is happening because of XYZ”, well you just can’t put a price on that sort of corroboration.

The clinic is sort of far, and I definitely don’t plan on driving myself, so hopefully it’s worth my while getting over there. I really trust the cardiologist who is referring me. He’s an excellent physician, very thorough, knowledgeable, and compassionate.

I gathered some information from the POTS Treatment Center’s website and am including it below. I’m also including a link to their website for anyone who’s interested in working with them. They do accept people from out-of-town into their program.

Pots Treatment Center

What is POTS?

POTS stands for postural orthostatic tachychardia syndrome. It’s a combination of symptoms caused by dysfunction of the autonomic nervous system called dysautonomia. Clinical testing for POTS includes checking the patient’s heart rate when moving from lying down to standing to find an increase of at least 30 bpm in 10 minutes or less. POTS can also be classified by an excessive increase in heart rate on a tilt table, more than 100 bpm, as well as a significant change in blood pressure.

POTS Symptoms

  • orthostatic intolerance
  • tachycardia
  • bradycardia
  • light/noise sensitivity
  • thermoregulatory issues
  • headaches/migraines
  • dizziness
  • chest pain
  • exercise intolerance
  • fatigue
  • shortness of breath
  • GI issues
  • insomnia
  • blurry vision
  • sweating
  • menstrual irregularities
  • fainting
  • joint/muscle pain
  • tremors
  • brain fog
  • frequent urination
  • anxiety
  • nausea
  • cognitive impairment
From potstreatmentcenter.com

Treatment for POTS

Regulation of blood pressure and heart rate are important treatments for POTS. Diet, nutrition, and an exercise plan are also recommended for POTS patients. Compression stockings, salt tablets and IV fluids are often prescribed to relieve POTS symptoms.

Causes of POTS

POTS can come about after a viral illness, hospitalization or period of extended immobilization. It can also be triggered by trauma, pregnancy or head injury. The majority of POTS patients are women between the ages of 15 and 50. It is considered a common illness in the United States, although it is not well understood by physicians.

Resources:

POTS TREATMENT CENTER

The Cleveland Clinic – About POTS