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Is My POTS Cured?

The transcript can be found under the video. Am I cured? This is the question I get the most often.

Are you cured? This is a question that I get the most often. Are you cured? and I fully understand why I get it. When you have a condition like POTS, you look around trying to find others that are in the same place or in a similar place to you. You're looking instinctively for success stories or stories of hope that can help you. What are these people doing that might work for you? Have they cured? Will I get better?

And whenever I get asked this question I always find it really difficult to share in writing everything that I want to say, because it's not as straightforward as a yes or no. So my POTS Journey has been a really lengthy one. I had gastroparesis and small fiber neuropathy as a small kid. Then, during my senior year of high school I had a surgery that it took longer than usual to recover from and then after that point as when I started having the palpitations and the chest pains and a lot more issues with heat and managing heat. It got worse every year until around five years later when one day, out of the blue, my symptoms got significantly worse. Every time I stood up my heart rate would be maybe 140, 150, 160, 170 kind of around that range. The chest pain and the squeezing pain and it was just radiating down my left side it became a daily occurrence. I couldn't bear the heat at that point at all, even if it was mildly warm.

Beta blockers help reduce the heart rate, but all the other symptoms just kept progressing behind the scenes. So again, it blocked some symptoms but my body quickly found a way around the medications.

My gastroparesis got worse, at that point I also ended up having SIBO which made it a lot harder to keep food down. The raynaud’s got worse, probably also due to the beta blockers. So if it was a bit too chilly I was in pain, if it was too warm, my chest hurt and I couldn't breathe.

I just remember being so fatigued I would cry because I just I didn't know how else to cope with it. I also struggled with insomnia and so on and so forth. I'm sure a lot of what I'm mentioning you could relate to.

So that was then. Now, my first symptoms, again back to when I was a kid, were gastroparesis so a lot of nausea and sometimes vomiting too. Now Where am I now? For example with this, I am now at the point where I could hold down my food without being nauseous I could actually eat full meals and not have to just rely on little bites every few hours. Which means I could actually stop carrying around a bag of food with me everywhere I go and just rely on meals to keep me full, which is something that I really haven't been able to do the majority of my life since ever. so that's that's big.

The second symptoms that I had that really, really bothered me a lot were the heat intolerance. I can now proudly say that I could stand in hot rooms, I could stand in hot temperatures, I could even walk for long distances in hot weather, which is something that, again, I haven't been able to do, I guess, since high school at some point. Most importantly, I can stand. Which might sound simple but it's important.

I can stand without my heart rate shooting up to crazy highs, I could stand and walk and move around without the really terrifying radiating chest pain. I mean just that pain was just so unbelievably terrifying every time it came on and I'm so grateful not to have that be a daily constant anymore. Without seeing the black spots and the getting dizzy and lightheaded as I stand up. I can now perform a full day of activities without crashing the next day. So I could do high intensity interval training workout in the morning, which is what I enjoy doing and then afterwards take a shower standing up and then afterwards go grocery shopping. All three of these in a row.

Before, if I did even one or attempted to do one of these activities in the morning I would have to nap or rest for hours afterwards just to regain a little bit of energy not to actually get back to baseline, that's a whole separate story. So overall, I do feel better now than I ever have in my life

Now you might be thinking this thing going: ...okay, well it sounds like you're cured, why aren't you just saying so?

So if you look at the word cure it means that after a treatment the patient no longer has that particular condition anymore. So for example, if you have pink eye you might take antibiotic eye drops and then you're good to go. You're cured.

with a condition like POTS it's a lot more complicated since it comes with a lot of symptoms and effects every part of your functioning from the eyes, the mouth, the heart, the sweating, the blood pressure, circulation, etc. The causes are not entirely known, there very well could be a genetic component to it a part of it I've had symptoms since I was a small kid, again, they got significantly worse later on but there was some sign of autonomic dysfunction from very early on.

So, although I can function like non-POTS people, there will always be things about me and my body that function a little bit differently. For example, I don't choose to push my body the way I used to or the way the others my age might. I have friends that work 60, 70 hour weeks and then they go out drinking on the weekends and they seem to be fine. I could do things like that for short bursts but I can't do it for a prolonged period of time without it impacting my health.

I'm also more sensitive to various symptoms returning when I get something like an infection or something like that. My nervous system seems to be more finely tuned than some others so I have to treat myself with a lot more gentleness, as a result. I've rearranged my life in a way to accommodate for slower living.

An important part of it all was getting rid of a ridiculous amount of things that I didn't realize actually impacted my energy levels. So even now on a day-to-day basis I do spend extra time in bed in the morning while hydrating to make sure that all the blood is where it's supposed to be. I move my body every single day and make sure to incorporate exercise. My diet consists of homemade healthy meals. I do breath work and meditation every day and cold showers. Now I'm not just saying that these 5 things that I just mentioned, you do these and you're cured and everything is done and you're good to go. A lot more of that I did was a lot more than this, but these five have remained or however many there were kind of as the essentials. They're pretty much what I have in my toolkit.

I noticed that if I don't do these, I notice an uptick in symptoms. So very much an important part of my toolkit at the moment. I've also noticed a similar pattern with my clients. Doing our work together they feel better and more active and they're doing great, and for example something like covid comes along and whatever symptom has been bothering them the most. Whether it was palpitations or fatigue or muscle aches comes back. But at that point, they've experimented with things and they have their toolkit and they have their essentials. So within a few weeks or sometimes less than a few months, they're back at their baseline so they're they're much quicker to get at their good baseline than it was before, because at this point they've instituted all of these things and they just have the basics that they know they could pull out and this is what I need in this moment to get to where I want to be.

but again there is a certain susceptibility there, right, so something like Covid or something like an infection might make certain symptoms return. I would say that the word that describes this process better is healing rather than curing. Healing is much more of a holistic process, so it actually embodies mind, the body, the spirit and that's what results in some of the positive changes that are seen and also in the meaning and then moving towards a sense of wholeness, right. Something regardless of whether or not there is the disease, whether it's absent or present in that moment.

Healing can happen while the condition is still there. This can mean rearranging your life to better suit the symptoms instead of pushing and trying to do everything while you're feeling unwell. It also means a pretty healthy dose of acceptance. And just to reiterate acceptance does not mean giving up.

For example, brain fog was one of the symptoms that lasted the longest for me. And it seems to be quite the same with other people too when they've mentioned that their brain fog really last, seems to be one of these long-lasting symptoms that takes the longest to kind of push away. Now, when I got off beta blockers, I thought that it would disappear and it did, it did a little bit, it worked a little bit to have more clarity. But then I kind of thought to myself: Okay, I guess I have to accept the situation as is and that's how I would continue being. But then, five months later I noticed a significant improvement in brain fog. So it goes to show you, you never really know.

A few of you might be thinking: So, does that mean you're just managing your symptoms, It's not really better, you're just living a more restricted life? Sometimes people might say things like Well, I don't want to make any of these lifestyle changes unless I get cured and my energy levels at a 9 out of 10 or it's significantly improved and I'm able to have the exact life I used to have before I got sick.

What's the point otherwise they're doing hard changes? Now if that's you and you've had you know similar thoughts or thinking in a similar vein it's perfectly fine and normal and it happens quite often. I would invite you to consider that perhaps through the process, you might change in your definition of what life you want to lead, might change. Perhaps while undergoing this healing process your priorities change and you naturally embrace a slower pace of life without it feeling like something that's restrictive upon you. A life in which you do have an energy level of 9 but you're just not doing as much. And although right now it might not seem like it, it can come naturally to you.

The danger with expecting kind of the energizer bunny returning back to everything as before is that sometimes you might take on really big ambitions and really big goals and when you don't see results quickly, you might get discouraged and not keep on going. On the other hand, one of the other thinking traps that I sometimes see is people who believe that they might just get a little bit better or not really better at all, and that perhaps they could just manage your symptoms a little bit and that's kind of the best it'll ever get.

With this the risk is as a kind of a safety mechanism is that you sometimes tend to not give it your all, right, because you're not sure is this going to actually work for such a little Improvement what's the point of really putting more effort in? What's the point of giving it to your all if it won't work?

Now you might recognize yourself in one of these patterns, both of these, oscillating between the two of them. You might even find it helpful at this point to kind of journal about your reactions and to see what are your thoughts on what I've just said or even about these two kind of thinking patterns, what are your thoughts on healing or getting cured or whatever you want to call it. Just an invitation. The goal is always to be kind of somewhere in between, giving you your best while keeping an open mind about, you know, how life and how things will play out.

Let me know, what are your thoughts on curing something like POTS? What are your thoughts on this?


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