My Dysautonomia Journey, Part 2 – Dysautonomia Awareness Month

Please read part one of my journey: here.

Dysautonomia has no cure.

Some people “grow out of it,” while others never do. The main people that appear to “grow out of it” are teenagers – these people tend to get sick due to all the changes happening in their body while they are going through the transition from child to adult, but then they get better when they reach adulthood (medical adulthood, not age 18).

copy-of-dysautonomia2

Since my dysautonomia started after I became an adult, it is unlikely to go away. Becoming pregnant could make it better, worse, or it may stay the same. Even if it gets better with pregnancy, I may go back to the way I am now after giving birth, or could get even worse than I am now! If it gets worse during pregnancy, it may get better after birth (better than now) or go back to how I am now, or it may stay worse. There is no way of telling for sure what it will do. Starting menopause will probably change it again, but there is even less known about what will happen with my dysautonomia at that point in my life.

With my current medication, exercise routine, and a dash of luck, my blood pressure and heart rate are mostly under control. I do a lot to try to help my dysautonomia, and health in general, and it’s still not perfect. Luckily, my dizziness is also mostly controlled with my current routine.


Symptoms I Still Have

While many of the “main” symptoms of dysautonomia are under control, I still have a lot of dysautonomia symptoms. The main symptoms that are either directly caused by dysautonomia or exacerbated by it:

  • temperature disregulation – I can be either just fine at 70°F (21°C), too hot, or too cold. This can all happen within minutes. Also, my body will overcompensate at times so I will go for a walk in cool weather, come inside and start sweating buckets and feeling like I’m going to be sick from overheating. This is my biggest symptom (and I will probably do a more detailed post later this month). (I also mentioned it in my Instagram post yesterday.)
  • delayed gastric emptying – this is a periodic symptom. While I have had a normal gastric emptying study, my gastroenterolgist, dietitian, and myself all agree that I have all the symptoms of delayed gastric emptying (or gastroparesis). After a lot of detective work, it does seem to be somewhat related to food sensitivities.
  • on-going nausea – I have had severe and persistent nausea for quite some time. Thankfully, it has been better with a stricter diet (I tried a lot of diets, and now I currently follow a corn-free, reduced gluten, and reduced histamine diet) and the regular aromatic and topical use of wild orange essential oil. (If you’re interested in learning more about essential oils for occasional nausea, you can email me at findinglifessilversun[at]gmail[dot]com or you can leave a comment below and I’ll get in touch!) I’m hoping that it will continue to improve the longer I follow this regimen. It is, however, never gone completely and will flare up from time to time.
  • irritable bowel – I have severe irritable bowel syndrome, and have had it my entire life. However, since my dysautonomia started, it has been getting increasingly worse. Thankfully, it has gotten a little more manageable thanks to the help of my fantastic dietitian! But it will still flare for absolutely no reason (at least, not a known reason), and I attribute that to my dysautonomia. The baseline of “okay” has also increased, which I believe is also due to the dysautonomia.
  • dehydration – I can’t stay hydrated. When I was tracking my fluid intake, I was drinking two and a half to three and a half liters of fluid on a daily basis, and I was still dehydrated. To put that into perspective, the average recommendation of eight glasses of water a day is just 1.89 ounces (close to two, but not quite). On an average day, I have to drink over four liters to finally be obviously hydrated (TMI: that means urinating almost clear fluid). Drinking four liters makes me very nauseous if I’m not physically active, however, so I don’t try to do that unless I’m sick.
  • brain fog – this is the feeling of being very out-of-it. It really does feel very similar to looking through a dense fog and trying to make out the shapes of the blurs. However, instead of looking outwards, you’re looking into your own mind and trying to form sentences and cohesive thoughts. Sometimes, it’s barely there and it just is a frustrating “I know this, I really do…” feeling, but other times it’s a “what is my name?” feeling. The longer I’m standing still, the hotter I get, or the sicker I get, the worse the brain fog gets. It’s super irritating and is a symptom of both fibromyalgia and dysautonomia.

I wrote more about dysautonomia in an Instagram post, which you can view here. I will “recreate” the post below (the text won’t be formatted properly if I embed the post). Please still check out my Instagram and give me a follow! I’m going to be posting a bunch of dysautonomia posts throughout the month of October!

chronic illness warrior strong arm

Dysautonomia is an invisible and chronic condition, meaning people affected by dysautonomia look just fine on the outside.

Having an invisible illness is extremely frustrating in that we often get judged as being undeserving of accommodations we need. Because dysautonomia often impacts young people – preteens, teens, and young adults – people around us see a young, lazy person instead of a disabled and struggling person.

Sometimes, I’m fine.
Sometimes, I need to plop myself down on the ground in public because I misjudged my ability to walk.
Sometimes, I need to use the riding cart in a store because I can’t walk that long and Dan can’t push me and a cart. Or he’s not with me.
Sometimes, I need to use my own wheelchair – a transport chair – because standing still interspersed by walking makes me feel like I’m dying (no exaggeration).
Sometimes, those cute knee highs I’m wearing are compression socks and are the only reason I’m still able to smile and carry a conversation.
Sometimes, I’ve overheated when it’s only 70°F (21°C) and am at risk of passing out.
Sometimes, I’m freezing cold when it’s 70°F (21°C) and need all the blankets and all the heaters.
Sometimes, I’m just fine.

(You can get the sweatshirt I’m wearing in the picture on my Zazzle shop! Here’s the direct link to the sweatshirt: Chronic Illness Uniform Sweatshirt. My Zazzle shop also has several dysautonomia designs, and several other designs for chronic illness. Check all my designs out: here!)



Please share this post to help spread awareness for dysautonomia and what it’s like to live with it! No one should have to wait six years for a diagnosis!

I am one of 70 million

If you can afford even a small amount, please donate to Dysautonomia International: here. DI is funding crucial research into dysautonomia, and someday we will find a cure! Let’s make that cure happen faster!

Donate Now!

 

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