Telling It Like It Is

I'm going to say it like it is today, so if you don't like to hear the truth, it's probably best you exit this page. When it comes to any form of illness; disease, condition, syndrome, whatever it may be, there is a good chance people just do not care what you're going through. Unless, of course, it's terminal. See, another hard lesson I had to learn because of my health is just that – nobody wants to be around you or act like a friend unless you're dying or dead. What they don't seem to understand is that there is no guarantee any of these illnesses won't be the reason anyone of us dies. Sure, there is a good chance we'll all be miraculously cured someday. Nobody talks about all of the people who don't end up better though. Another thing none of those people understand is how frequently your body can convince you that you just might be dying this time.

Something I've had an incredibly difficult time explaining to people is how sick I really am, and how POTS affects my entire body. Everyone laughs it off when I say it affects everything, literally every part of my body somehow, because they assume I'm just fed up and exaggerating. I'm really not. In general, POTS patients can experience any of the following, at any given point, with no warning at all. The main symptom of POTS is having a ridiculous heart rate, and by ridiculous I mean it increases to over 120 bpm, or more than 30 when you change from lying down to sitting/standing. There have been quite a few days where my “resting” heart rate was between 130-140 bpm, and that was lying down. Following this abrupt change, any or all of these can happen; nausea, lightheadedness/dizziness, chest pain, shortness of breath, ringing in the ears, heart palpitations, fainting, disorientation, brain fog, inability to exercise, fatigue, cold fingers and toes, blood pooling in the legs, weak muscles, low or high blood pressure depending on your body's reaction, headaches, bloating, diarrhea/constipation, stomach cramping, tremors, visual disturbances, insomnia, overheating/chills, nervousness, and more.

To put this into perspective, I'm currently experiencing all of the following at this very moment; increased heart rate (it was 136 last time I checked), nausea, recurrent chest pain, shortness of breath, brain fog, inability to exercise, fatigue, cold fingers and toes, weak muscles (I'm forever dropping everything, including myself), low blood pressure, bloating, tremors, visual disturbances, headache, and chills. When things get really bad for me, I can experience premature ventricular contractions (essentially heart skipping a beat which results in strong palpitations – feeling a strong beat). In terms of brain fog, I've forgotten my birthday, my address, my phone number, parts of well known routines, and more. So when it comes to remembering short term things, such as where I put my purse down, it could end up lost forever. On top of all of these symptoms, many of us have multiple other conditions with POTS (or another dysautonomia condition) and experience multiple symptoms from each of those as well.

Despite all of this happening, when people ask me how I'm feeling or doing, I almost always answer with “I'm okay”. Why? I've learned to accept my most common symptoms as normal life for me, so I'll only ever admit to not doing too well when my symptoms get out of control or I get a virus on top of my usual symptoms. Plus, most people take it at face value and wouldn't care to hear you list off the 20 symptoms you're currently feeling as an explanation for why you're not doing well. Back to my original point, I spent a long time pretending I wasn't that sick, mostly because that's what people want to believe. Have you ever noticed the only awareness campaigns that turn out successful are centred around death? Cancer, suicide, tragic accidents, whatever it may be.

Now, in no way am I saying we should all abandon these causes or that these people don't deserve recognition. I am saying we could all do a little more to recognize those that are doing their absolute best to survive and push through conditions that may or may not kill them. Just because most of us aren't on our death beds does not mean there is nothing equally as troubling happening to us. Many of us are grieving just the same, many of us have been forced to watch our goals and dreams die along with the healthy version of ourselves, and many of us would just like to hear someone step up and recognize that once in a while.

No, POTS is not terminal that we know of, but yes, we are all fighting very hard to make sure of that. As I'm certain all of you have learned in your lives, fighting against something that seems never ending seems nearly impossible without a support system. That goes for all struggles, not just health. If you accomplish nothing else today, do your best to support someone - whether they seem like they need it or not. Even if they don't seem to value your support much right now, I'm sure that will become a moment they will look back on in a positive light. There is always room to grow into a better person than you were yesterday, and you should never prevent yourself from trying.

As always, rest easy spoonies.

Follow me on Twitter at @AllThingsTachy

Dealing With Ignorance: But You Don't Look Sick!

One thing you will learn relatively quickly when dealing with chronic illness is that there will always, always be someone who is too ignorant to understand. The good part is, these people usually stand out like a sore thumb by using phrases like “but you don't look sick...”. The amount of times a person dealing with an “invisible” illness hears phrases like this directly relates to the amount of patience they have when this occurs. Understandably, being sick and unable to do simple things you've spent your whole life doing is incredibly frustrating. Adding on the frustration that occurs when an outsider thinks looking fine on the outside means you're magically cured and/or are imagining the whole thing? Well, it's no wonder I've developed an eye twitch.

The easiest, and most efficient, way I've developed for dealing with ignorance concerning my illness is quite simple – do what my mother has always told me to do, and simply ignore them. Who knew mom actually knew what she was talking about, right? Now, if any of you are similar to me and the very idea of ignoring someone so coldly seems too far fetched for you, then do your absolute best to focus on something happier, funnier, or even more logical than whatever may be coming out of the mouth of ignorance. For example, I think of the spoonie community and all of the memes passed between us about individuals just like this one, and laugh to myself a little.

See, the crazy part is, most of these people don't even realize just how simple minded they sound. Most of them are even convinced they are doing, or saying, nice things to us and helping us in some way. I do my best to forgive each and every person that puts me, or my illness, down in some way. Sure, some take a lot longer than others, but I always try to remind myself that none of those people can relate to the life I have to live now. The best they can do is try to imagine what I might be experiencing, and even that is often asking for too much. Ask yourself, if you were the healthy person in this situation, would you react differently, not knowing what you know now?

No matter what the situation is, illness or not, looking at the bigger picture will always benefit you. Always. Unfortunately, I can pretty much guarantee you will continuously hear the most aggravating things from the most unsuspecting people. They will constantly tell you that you don't look sick because they just don't know what they're looking at. They will always try to suggest things that seem so obvious to you but so crucial to them – stuff like, 'just get more exercise', or 'change your diet'. As if this thought never could have ever been fathomed in our own minds without their insistence. These are the very situations that will develop your patience. So, if nothing else, thank them and leave it at that. Neither of you may realize it at the time, but it is through these learning curves that we are able to develop ourselves deeper than we originally thought we were capable of. Someday you will realize just how much all of those snide little comments helped you blossom into the beautiful person you are becoming. Until that happens though, feel free to Google chronic illness memes and laugh to yourself, while also finding strange comfort knowing someone out there completely gets you and what you're going through. And hopefully, they too are laughing.

Rest easy spoonies. 

Immune System? What's that?

I don’t know about any of you, but when it comes to avoiding illness my immune system acts as a net with no goalie – as in, I catch EVERYTHING. No, that’s not an exaggeration in the slightest. I understand flu season is probably nobody’s favourite time of the year, but I will avoid illness like the black plague when flu season rolls around. If I so much as hear you sniffle a little, I automatically go into escape mode. To a healthy person, this probably seems incredibly conceited and downright rude. To anyone else who experiences a compromised immune system – well, you probably know what I’m talking about.

See, having a chronic illness literally means you are sick all of the time. Day in, day out. Even when you tell people you’re feeling good, you’re probably experiencing multiple symptoms that you’ve just learned to go with. So when somebody comes around complaining about the cold they’ve experienced for three days, avoiding that person seems almost necessary. Being sick is hard enough, but getting sick on top of being sick? That just shouldn’t be allowed.

Unfortunately, a huge part of having a compromised immune system is exactly that – your body cannot fight off illness as well as a healthy person. For me, this not only means I catch everything, it also means I usually get hit harder than others, and it generally lasts 2-3x as long. Often, I try to fight it off for a week before just caving and going to the hospital. So needless to say, being so crazy about what should be a simple infection does not seem so crazy after all, does it?

I know some of you are probably thinking – why don’t you just get the flu shot? Stock up on vitamins and minerals? Change your diet? Etc. To begin, flu shots have shown evidence of making chronic illness worse, and no, I’ve personally never tried it. I also have no plans currently to do so, and here’s why: the flu shot only protects against certain kinds of flu’s, and I am not brave enough to test it out with the possibility I spend an undetermined amount of time sicker than I already am. Somebody else may find that worth the risk, but I do not.

In terms of vitamins and minerals, my body has been tested multiple times and has proven I am fully loaded with everything I need. For the few that are low or borderline, I take those in supplement form. Diet is a fairly tricky thing for those with POTS. Many have other underlying disorders affecting their appetites and diets; IBS, Celiac, allergies, Crohns, etc. Basically, most of us eat whatever we know we can tolerate easiest, and whenever we feel like we can. It’s a well known fact that eating smaller, more frequent meals helps ease the digestion process. However, eating small amounts more frequently is kind of necessary for most with POTS. Between the bouts of severe nausea and loss of appetite, food isn’t always on top of the list of necessary things. In short, if some magical diet existed that ensured you wouldn’t catch a single infection while following it, it would probably still cause other POTS symptoms to rear their ugly heads.

One more thing I’d like to briefly discuss, about flu season especially. One thing I have noticed, possibly more than usual, or possibly just because I am now more aware of it, is the amount of people who insist on continuing on with their daily lives while fighting off infections. Now, I realize a lot of these people have important places to be and important things to do, and to a lot of them a simple cold or flu seems like not that huge of a deal. However, this is something that can quickly become panic inducing for someone like me. If I so much as sit beside you on a bus, by the time one of us gets off, I could already have the infectious germs you have now so kindly shared with the public. This means I will now spend the next multiple weeks stuck in my bed, and possibly a hospital bed, because you thought you could not sacrifice one day to rest up for yourself. So please, next time you think you have to be somewhere, consider what you could be risking at the cost of other people, if not yourself. One day of resting will only benefit the both of us.

With all of that being said, there are so many things I could just go on and on about and probably will in another post at some later date, but for now I will leave you all with this. I hope each and everyone of you are managing well despite this insane winter we are experiencing, and I hope the majority of you have avoided flu’s this winter. 
As always, rest easy spoonies. 

Where Did All My Friends Go?

Something I have no doubt you have noticed if you have a chronic illness is how abruptly you suddenly find yourself alone, or feeling alone. Before I became ill, I had what I would have considered a close circle of friends I could count on for anything. Shortly after becoming sick, and with no diagnosis to explain why, I found myself with one good friend and only my immediate family to rely on.

The incredibly frustrating part about illness is that despite all of the pent up emotions you are experiencing, those around you are most likely experiencing them as well. Sure, maybe not on the same spectrum, but often times you are still expected to understand and even sympathize with them for being frustrated with you.

This is where things get tricky, usually really quickly. Most people obviously don’t plan, or expect, to become ill at any certain point in their lives. However, with dysautonomia, that can change in what feels like a second. Unfortunately, nearly all of the people I have found with a diagnosis of POTS are young women, a lot of whom developed symptoms abruptly in their teen years.

For many people I know, illness is a very difficult thing to come to terms with. For teens, often they feel the best way to deal with an issue is to avoid it and pretend it isn’t happening. To be fair, quite a few adults still do this too. However, this is where that circle of friends that you thought would be there through anything starts to dissipate. Having a chronic illness is a blessing and a curse when it comes to relationships. On one hand, you learn faster than you ever thought imaginable who your true friends are. On the other hand, you can’t help but feel betrayed and abandoned by those you thought you were closest to.

One thing I tell myself constantly when things start to get really tough is “this too shall pass”. I like to remind myself that no matter what sort of crazy, miserable, and just plain messy madness is occurring, it is only temporary. I can promise you that you will probably never forget how those people made you feel, but there will be a time where you are thanking them, instead of despising them. There will be a time where the pain is not a constant feeling, but a fleeting reminder of how strong you are to be able to do this. And I can promise you, you will never be alone. After all, if you’re reading this, there are at least two of us in this thing together. And I don’t know about you, but I have no plans on moping around because somebody else is shallow, they have their whole life to do that for their self. Consider the fact that maybe your life is actually better off without them. Crazy, right?

On that note, I encourage you to take a look around you and recognize the people who either stuck by you, or showed up along the way. Life has an interesting way of directing us to where we’re supposed to be, and a lot of the times it isn’t the way we would have chosen for ourselves, but somehow we still get to where we need to be – eventually. If there is one thing you can do for the people who support you, new or old, it’s to let them know how much you appreciate and value them. Who doesn’t enjoy hearing their efforts are recognized? If you’re reading this and insisting that you have no one, just remind yourself that sometimes you’ve got to spend some time being alone to truly appreciate good company. Every feeling that you feel right now is temporary, and you can seek comfort knowing that at some point, it has to go away. Rest easy spoonies. 

Welcome :)

First of all, hello, and welcome to my blog. Here is where I will share my journey with chronic illness, specifically a condition of dysautonomia. (POTS).

I’ve created this blog in hopes of helping others with similar conditions, whether it is helping them understand what is happening to them, or just helping them accept what their ‘new’ life with illness will be like. I would like to help all of you realize that none of us are alone in this, as well as help those of you who may have ended up here because of a family member or friend you know with a chronic illness, but may not know what it means or how to help support them.

To begin, my name is Judy, and I’m a 20 year old Canadian. I enjoy photography, fashion sketching, writing, reading, designing, and planning - when POTS isn’t causing me too much trouble. I became very ill three and a half years ago, but did not receive a diagnosis that explained what I was experiencing, or why, until two years after that.

Postural Orthostatic Tachycardia Syndrome is a condition of dysautonomia, meaning it affects the autonomic system (essentially every part of the human body). It is classified as a rare disorder, although it is more likely just rarely diagnosed. I’ve personally experienced many people in the medical field who had no idea what this condition is or how it affects an individual (they often end up Googling it because they think I’m making this stuff up). 

I have not yet met anyone (in person) who has any condition listed under dysautonomia, which can make it feel like a very lonely and isolating illness. However, thanks to social networking (Twitter) I have found there is a community of “Spoonies”. A “spoonie” is a person that suffers from a chronic illness of any kind. (If you’d like to learn more about Spoonies, follow the link below). 

I hope to extend this feeling of closeness and community to the world of blogging. Welcome to my journey. 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/