I can’t believe that October is already over! How is it November 2017 already?!
Sorry my posts completely stopped. I got very sick and couldn’t look at my computer for a good chunk of the month, and then life got in the way after I recovered.
However, I didn’t want you to miss out on all the stuff I did post for the month!
- Dysautonomia Awareness Month Kickoff
- What is Dysautonomia?
- My Dysautonomia Journey, Part 1
- My Dysautonomia Journey, Part 2
- Temperature Dysregulation in Dysautonomia
- 10 Common Dysautonomia Misconceptions
October is dysautonomia awareness month! 💙 Dysautonomia is an umbrella term meaning a malfunction of the autonomic nervous system (ANS). The ANS controls all the automatic functions of the body, such as: blood pressure, heart rate, temperature control, digestion, and more. Literally everything your body does without you needing to conciously think about it is controlled by the ANS. . When the ANS malfunctions, it can impact any and all of these automaric systems. . Dysautonomia is more common than MS (multiple sclerosis) and Parkinson's combined, yet almost no one has heard of it - including medical professionals. Getting diagnosed is a challenge in and of itself, let alone getting proper treatment! . Please join me this month in spreading awareness for dysautonomia: #MakeNoiseForTurquoise 💙💙💙 ... ... #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness @dysautonomiaintl
Turquoise knee highs for #DysautonomiaAwarenessMonth 💙 . One of the many ways in which dysautonomia can affect the body, is by compromising circulation. Circulation of blood through the body is regulated by the autonomic nervous system. (I am talking strictly about circulation, separate from blood pressure and heart rate.) . Due to circulation problems, our extremities (legs, arms, etc) may get either too much blood or too little blood. Both can occur at different times in the same individual. . About 90% of the time, my feet do not receive enough blood. This means I have to keep my feet covered at all times or they get ice cold. In the winter, they're ice cold 24/7 unless I put heating pads on them. In the summer, I have to wear socks (unless I'm outside and walking around a lot) even if it's extremely hot. . The other 10% of the time, they're roasting. They will get red hot (literally) and swell. The only way to help alleviate the burning is by elevating my feet. This usually comes about by spending too much time on my feet. . We suspect I may have one or two other conditions that either exacerbate this, or are exacerbated by the dysautonomia. . I experience similar problems with my hands, but not as severely. It's most obvious in the winter, when I have ice cube fingers almost constantly. So much blood will leave my hands at times that they'll get pruny. . At least I get to put my collection of socks to good use now! (And I have several adorable gloves/glovelets now.) ... ... #dysautonomia #CirculationProblems #PoorCirculation #ChronicConditions #ChronicIllness #LizzsSocks #socktober #socktoberFLSS #KneeHighs #TurquoiseSocks #TieDyeSocks
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. ... Check out my latest blog post to learn more about dysautonomia! 💻 findinglifessilversun.wordpress.com/2017/10/04/what-is-dysautonomia (Or click the link in my bio and click on the post title: What is Dysautonomia) . You can get this sweatshirt on my Zazzle shop! It's super comfortable! 💻 zazzle.com/FindingTheSilverSun (Then click on "chronic illness" and you'll see all my designs! I do have dysautonomia specific designs too.) ... ... #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise
When dysautonomia symptoms first start, and during flares, it's easy to get panicked. The symptoms can feel like you're legitimately dying. You're not. . Panicking will just increase your adrenaline and make your symptoms much worse (especially if one of them is tachycardia). The best thing to do is sit down (or lay down) and breathe. It's hard, and it sucks, but only after you calm yourself down can you logically evaluate your symptoms. . Panicking includes people around you. If you get faint or pass out, and people panic, they are likely to injure you or work you up into injuring yourself. The best thing a caretaker can do is remain calm. . When I need to calm down, I turn to guided meditation. I use the @calm app to help me meditate (there's free and paid versions. I have paid because I use it daily, but free is just as awesome). I'm not affiliated with them, just absolutely love them! I will also use calming and uplifting oils - such as wild orange or lavender - in my diffuser or inhaling straight from the bottle. Together, I've been able to calm down enough to realize I'm okay almost every time. . What are your favorite tricks? .. Keep an eye on my blog! Tomorrow at 7:30am mountain time, I'll be posting the first half of my dysautonomia journey! ... ... #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise
Let's talk about dysautonomia and the weather today. . Many people with dysautonomia have some sort of weather struggle. ▶ Most commonly, dysautonomia gets worse the hotter it gets. Part of this is due to the fact that blood vessels dilate when it's hot, even in people without dysautonomia. In people with dysautonomia, our bodies can't keep them constricted enough to return blood to our brains and hearts, which means we either pass out, come close, or wish we would. The hotter it gets, the more we have to lie down. ▶ A major struggle people with dysautonomia have with the weather is an inability to regulate our body temperature. Some people only struggle with heat intolerance, so summer is miserable for them (blood vessel dilation AND overheating while sitting still). If someone has heat intolerance, a "comfortable" temperature can be absolute torture. Some people struggle to regulate their temperature at all times, meaning they overheat easily and get a lot colder than "normal" at milder temperatures. This can be extremely dangerous as both hyperthermia (high body temp) and hypothermia (low body temp) can be fatal. ▶ Cold weather can be a problem due to the circulation problems I mentioned a few posts ago (turquoise tye dye socks picture). This can mean we are far more likely to get frostbite than average. . In general, the majority of people with dysautonomia prefer cold weather. Even if you have cold intolerance, it's easier to warm up than it is to cool down. If temperature disregulation is a huge problem, many prefer mild temperatures that come in the spring and fall. . Temperature disregulation is a huge problem for me, in both directions. I get freezing cold while Dan is sitting around in a tee shirt and no socks 😂 I also get severely overheated very quickly. I prefer to be colder because I can usually warm myself up: electric blankets, sweats, sweaters, hats, socks, tea/cocoa, and warm food (like soup or stew). . I actually took the pictures sitting in my sliding glass door, wearing a tank top with my sweats and socks. ⏬ More in comments ⏬
Dysautonomia comes with a lot of doctor's appointments. Everyone with dysautonomia has different specialists due to having different symptoms, but the two most common are cardiologists and neurologists - this is because there are frequently cardiovascular impacts that need addressing (blood pressure, heart rate, etc) and dysautonomia is a malfunction of the nervous system. . Many people with dysautonomia also have immune systems that aren't as robust as "normal." Sometimes, immune system impacts are due to other conditions (some of which can be the underlying cause of the dysautonomia), and sometimes it's due to the dysautonomia itself. My personal theory is that the body gets so overtaxed by all the dysregulation throughout the body, it just can't keep up immunologically. There is also a theory that dysautonomia is autoimmune related, which comes with immune system problems. . I get sick easily due to a large variety of reasons, so I have started wearing a mask (either the pictured Vogmask or a Breathe Healthy mask) when I know I'll be around germs. I wear it to most doctor appointments, especially my cardiologist because he's in a hospital that specializes in respirarory illness. . Today, I saw my cardio, and we're adjusting my medications to further help my blood pressure (and possibly my heart rate). It's a long and slow process of finding the right medications to treat dysautonomia. . Do you see other specialists for your dysautonomia? What docs do you see? ... Also, check out my blog for my #DysautonomiaAwarenessMonth posts! There's a link in my bio that will take you straight there! ... ... #DAM2017 #dysautonomia #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise #Vogmask
With dysautonomia, exercise is tricky. If you don't exercise, you can quickly decondition which will make you feel worse. If you overdo it, you can seriously set yourself back. . Yesterday's corn maze was WAYYYY overdoing it for me (see yesterday's Halloween sock post). I didn't realize the full extent of how badly I messed up until I woke up this morning... I think I got sick 😢 . I woke up very sore and dizzy (mostly sore). Even after 9 and a half hours of sleep, I was still dead tired. As the day has progressed, I've just gotten dizzier and dizzier, more fatigued, harder time breathing, and more phlegmy. It's only 6:30pm (8 hours awake) and I'm struggling to walk across the downstairs so Dan is having to get everything for me. I don't even want the TV on. . (Thankfully, I got my flu shot Wednesday... So it shouldn't be the flu.) .. I am writing a bit more about this in my blog post that I'll hopefully have it tomorrow. Be sure to catch up on all my #DysautonomiaAwarenessMonth blog posts using the link in my bio! ... ... #dysautonomia #MakeNoiseForTurquoise #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #Overexertion #sick #NormalPersonSick #GotACold
💙 Dysautonomia and physical therapy 💙 . I have done more physical therapy over the years than I care to think about, due to my generalized hypermobility spectrum disorder. Something is always injured. But after I had to see the same physical therapist for the same problem (hip getting stuck) several times, he sent me to a physical therapy and Pilates combination studio. . That move has seriously changed my life for the better! . I was diagnosed with dysautonomia very shortly after I started there. Because of the dizziness I get when I move from sitting/lying down to standing, we had to alter a lot of exercises I was doing (and she was always watching just in case I needed catching). My physical therapist and Pilates instructor now knows quite a bit about dysautonomia (she's awesome that way) and has been instrumental in keeping me functional! . I have been doing Pilates based physical therapy every week for almost 3 years (it's out of pocket, but worth every penny) now, and I try to get one or two Pilates group classes in every week. Sometimes, I can only do the PT, but that's okay! . I truly believe this routine is what allows me to walk as often as I do, and is why I'm still as functional as I am. However, I do know I'm extremely lucky and privileged to have started so quickly, and know that if I'd had to wait for a year or more I wouldn't be where I am now. That's why we need awareness: so more people can start treatments earlier!!!! . Pictures: seated mermaid (I keep my hands loose due to nerve problems in my arms) & leg circles with a resistance band Videos: bridging (arms up to keep them out of video) & leg circles with a resistance band . Be sure to check out all my blog posts for #DysautonomiaAwarenessMonth by following the link in my bio! ... ... #DAM2017 #dysautonomia #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise #PhysicalTherapy #Pilates #SeatedMermaid #LegCircles #ResistanceBand
💙 Dysautonomia Symptoms 💙 . Everyone with dysautonomia experiences different symptoms, but some symptoms are more common than others. ▶ Common symptoms include: dizziness, orthostatic intolerance, temperature dysregulation, hot/cold intolerance, inappropriate heart rate (high or low), inappropriate blood pressure (high or low), digestion problems, inappropriate sweating, headaches, fatigue, etc. . These are symptoms that I hear most of the people that I know with dysatonomia talk about. Dizziness seems to be one of the most common symptoms in all types. . I talk more in depth about the symptoms I experience regularly on my blog. To see them, check out the posts "My Dysautonomia Journey Part 2" and "Temperature Dysregulation" by following the link in my bio. . My most persistant symptoms are temperature dysregulation, dizziness, and orthostatic intolerance. Sadly, there isn't much that can be done about these symptoms. I try to exercise when I can to improve orthostatic intolerance. Dizziness can be helped a bit by staying hydrated. But a reactive approach (aka "symptom management") is usually the only way to treat these. (Like: if you're dizzy, sit down, if you're hot, take off layers, etc.) . What are your most persistant symptoms? ... ... #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise
This is my dysautonomia 💔 You can see the time stamps on my blood pressure cuff, and you can see they aren't very far apart... . I went for a short walk with Dan, just to our mailbox and back (1/4 of a mile total). When I got back into the living room, I wanted to check my BP. The reading on the left was taken while standing, right after getting home. . Then I sat down on the couch, with my feet on the floor. I started getting horrible kidney pain and heart pain, and I assumed it was due to my blood pressure continuing to go up... So I checked it. Imagine my surprise when the middle reading is what I got! 😱 Pretty sure the pains were from a lack of blood. . So I lay down, and put my feet up on Dan's shoulders (so they were elevated). After 5 minutes, my blood pressure normalized. (And I got the reading on the right.) . As you may be able to imagine, this left me completely drained of energy, and feeling quite ill. 😴 . You may also notice that the extreme low blood pressure didn't come with a high heart rate. Your body is supposed to elevate your heart rate when your blood pressure drops, to keep blood circulating, but mine does not. (The heart rate is at the bottom of the screen, and that number is totally normal for me.) This makes me a little nervous, and I'm worrying about what my body is doing. . This was Thursday night, and thankfully my blood pressure has stayed relatively constant yesterday and so far today. ... ... #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise #hypertension #hypotension
💙 Dysautonomia Awareness Lighting in Downtown Denver! 💙 . Saturday night, the Denver City and County building lit the top turquoise in honor of #DysautonomiaAwarenessMonth 💙 . It was so cool to see it, and so fun to see how huge our group was that came out for it! It was cold (46°F = 8°C, and windy), but still a fun time. . The wonderful lady who organized it (I have no idea how to spell her name) said it took 3 years of hard work to get it to happen because this building doesn't usually do lightings for awareness! I'm so glad she got to see it happen and that so many of us showed up! .. I tagged myself in the group photo so you could see where I'm standing 😂 It's crowded in there! (Dan is the orange hat right behind me.) Swipe to see more pictures (just the two of us in front of the building, and just the building)! ... ... #MakeNoiseForTurquoise #MakeSomeNoiseForTurquoise #dysautonomia #AwarenessLighting #ChronicIllness #ChronicConditions #InvisibleIllness
Dysautonomia impacts the entire body, and can make us miserable in so many different ways. Sometimes, it is hard to tell if something is "just dysautonomia" or a new problem that should get checked out. . There are an estimated 70 million of us around the world. 💙 Please help spread awareness and help us find a cure! October is almost over, but for 70 million of us, dysautonomia awareness month is every month! . If you are able to, please donate to Dysautonomia International so we can find a cure! Go to dysautonomiainternational.org and click "donate" in the navigation bar! . You can also help by reading and sharing awareness posts, including mine (they're in the link in my bio)! ... ... #MakeNoiseForTurquoise #DysautonomiaAwarenessMonth #DAM2017 #dysautonomia #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness @dysautonomiaintl
This is the last day of #DysautonomiaAwarenessMonth 💙 . Thank you so much to everyone who has followed along with other #DysautonomiaWarrior posts and my awareness posts this month! . Please, if you've been touched by my posts and/or the posts of other warriors, take a minute to donate to Dysautonomia International (@dysautonomiaintl) to help find a cure for the 70 million of us around the world! . I put the link to DI's donation page in my bio so that it's easy to get to! If you can't afford to donate, please share the information about #dysautonomia and the link to donate! . Let's end this year's awareness month with a bang! ... ... #DAM2017 #POTSsucks #stopPOTS #MakeSomeNoiseForTurquoise #ChronicIllness #ChronicConditions #InvisibleIllness #MakeNoiseForTurquoise
I run a Zazzle design shop (Finding The Silver Sun), and have created several designs for dysautonomia to make it easier for people to spread awareness of this debilitating condition. Here are my dysautonomia designs, and you can click here to find them in my shop.
I also have a variety of general chronic illness designs that you can get to from clicking here!
If you don’t have dysautonomia, but want to support someone that does, I can create designs that say “I love a dysautonomia warrior” or similar! Just let me know what you’d like to see and I can make it happen!
I only make a dollar or two per design, because of how Zazzle works. The entire rest of the price covers the item, printing, and shipping costs. Zazzle runs frequent sales though, so if you can’t afford an item keep an eye on it and it’ll go on sale soon!
Thank you for joining me this year for dysautonomia awareness month! Please remember that dysautonomia does not only exist in October – for 70 million of us, dysautonomia awareness is 24/7/365!
If you want to donate to help us find a cure, please go to Dysautonomia International’s donation page: here.