This blog exists for its users to submit articles, pictures and writings related to dysautonomia and what it’s like to live with. The sentiment behind it is that we have all suffered in silence, now- together- we have a voice.

To me, it seems tragic that there exists an illness so debilitating that it can attack the vital workings of the body and yet it’s not even been heard of by many people- including many medical professionals.

Whatever we, the sufferers can do to get the word out so that people don’t have to go on suffering the ignorance out there about dysautonomia, we will aim to do. This blog is one of the ways of doing so.

We are DARING to speak out about what it can be like to actually live with dysautonomia and have to put up with all the ignorance and misunderstanding about it. Dysautonomia Awareness is Rarely Experienced outside of the circle of people who are suffering with it. If we can work together to get the word out, to get the medical professionals to take notice, to help our friends and loved ones to understand what it’s like for us, then Dysautonomia Awareness can be Really Experienced.

That is what DARE is all about.

So, scroll down and read our blog posts, or click on the tabs along the top to take you to pages containing further information.  Link to us, and spread the word about this site to raise Dysautonomia Awareness!


The DARE team ~

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The first blog posted or use the search feature to find articles of interest. Enjoy your stay and remember- spread the word! 🙂


Sorry for not writing in a while, I’ve had a rollercoaster few months with med changes- you know how it is.

Something I’ve discovered over these past 6 months since getting diagnosed is that even with a diagnosis, even with a reason for the daily struggles- healthy people still don’t get it. I thought once I got diagnosed it’d make things easier because people would believe me and come to a greater understanding because there is something really wrong, but the sad truth is… they don’t.

But you know- even though that can hurt, it’s okay. Because you learn how to rely on yourself, how to be strong. There are times though, when it all gets too much and you need somebody. This is why I think websites such as TDC are so valuable. You really do make real connections with others who UNDERSTAND because they know what it’s like. They can support you over the internet better than your best friend, your partner or your family sometimes can in person.

That’s not to say you don’t need your best friends, partner or family’s support. That’s invaluable too. But you have to remember that they will say and even do things that hurt you- and it’s not because they are bad people. It’s just that they don’t understand. They don’t know what to say or do. They get frustrated with it too and sometimes, sadly, may inadvertently take that frustration out on you. Remember though, their true anger lies with the illness and not with you.

I guess it teaches you to communicate better. You have to be honest and vulnerable at times. Sometimes you have to ask for help when you really wish you didn’t have to. You have to accept help when you wish you didn’t need it.

All in all, tough to deal with though it is, chronic illness can be a great teacher. It can teach you how to be brave, strong and compassionate- both with yourself as well as with others. It can teach you how to be a great person even when you feel weak and useless. It can teach you better communication with others- because you can’t make anyone else understand. All you can do is learn how to help them to.

The sad truth is, you will lose friends, because many people don’t have the patience to stick around in a friendship with someone who can’t do the same fun things and who often has to cancel plans last minute. I think this boils down to a trust issue- they can’t trust you to do X,Y,Z with them or turn up to P, and because they don’t understand what it’s like for you to not be able to trust your own body, they distance themselves from the relationship. They stop trying. They don’t know how to show support, so they don’t.
The sad truth is, relationships will be more challenging and may even end.
The sad truth is, friends and family may not believe you could really be suffering what you are indeed suffering.
It’s sad and it’s true that most- perhaps even all of us to some extent- have to deal with that as part and parcel of dealing with chronic illness. But…

The beautiful truth is, there are people who will love you regardless. Who will see through the illness to the person that you are. Who will love you even more because of your inner strength and beauty. Who will see truly what an inspiration you are.
Your job on this journey is to find these people and when you do, make sure they know how much they mean to you. How what they do helps. How special they are. Because truly, people like this are rare. That’s sad because it means we have to suffer a lot of loss, hurt and disappointment from interactions with those more common people who let us down. We suffer loneliness, isolation, emotional pain. But that’s what makes it all the more meaningful and beautiful when we do find people who stand by us.

So- to those people in our lives who we can count on to stick around- a heartfelt thank you. And for anyone who’s lonely and isolated out there- let one of us be that person for them. Reach out and connect- isn’t that what life is about? At least one good thing about being chronically ill is that we are learning how to make true, meaningful and lasting connections with other people. Connections based on true friendship and real love. Let’s celebrate that with gratitude for some of the wonderful lessons we are learning in the midst of the struggles we endure.

To true friends!

Laura posting.
I wrote this to someone on TDC who was feeling down and thought I’d share it here also, and maybe add to it.

It ‘just happens’ that sometimes, there are times when it all gets you down and you wish things could be different. ‘It’ being having a chronic illness.

I still get it now sometimes. I got it yesterday. My hormones bring it on unfortunately. I seem to be able to cope with things well on the whole until I get a period and then everything is doom, gloom and woe!

But the thing is, most people who grow up having a chronic illness turn out to be nicer people than regular teenagers, many of whom can be shallow and selfish. You are forced to learn strength you never knew you had. You find yourself capable of things you never knew you were. Like coping with hospital visits, or the strength it takes to keep ‘carrying on’ through all the pain and uncertainty illness brings.

I know it’s NOT nice having to do that, but the fact is that being ill, whilst it does bring its hardships, also brings its own blessings that we just wouldn’t have access to without the experience of being ill.

Being ill might make us weak in our bodies but we do become stronger in our minds and hearts because we HAVE to. And that strength is invaluable. Yes, it’s still sad we had to miss out on ‘normal’ stuff. But the depth of character dealing with the losses brings out in us is something truly magical. Just look at Kyli- not to embarrass her or anything, but her youtube channel was an inspiration for me when I was undiagnosed and just learning about POTS- and for a young woman she has an amazingly true and beautiful, kind spirit. I doubt she’d be that way had she had a ‘normal’ teenage life.

Each one of us is beautiful and special in our own way and our lives have meaning- we just have to find the meaning in them when they turn out different than how we expected or wanted. Sometimes we need those times where we feel sad and vent/feel sorry for ourselves to mourn what we are missing out on. It’s only natural. We do have to face losses after all- the loss of who we thought we could be, things we thought we could do, even dreams we might never reach.

But that’s not to say we stop dreaming. I wanted to be a published author, but never found the energy to write a book (yet). Maybe I will one day. Maybe not. But even if not, I’ve found a way to reach out to others with my writing- that’s why I’m here, now, typing this. So there might be dreams we have to admit to ourselves we can’t reach, but we can always modify them. Make them more achievable. As long as we keep dreaming. I always dreamed of going climbing to the top of Machu Picchu. Now, I know I couldn’t and shouldn’t climb up there- but I’m going up there by bus one day soon. So what I am saying is- dreams can be reached, if we just change how we reach them or dare to dream a slightly different dream.

And after those times when we’ve had to mourn the loss of something- an aspect of who we once were, who we wanted to be, or something we wanted to do- we dust ourselves off, pick ourselves up- and get on with being the strong, beautiful people we are.

No matter what an illness takes away from you, it can never take away the fact that you are a beautiful soul with a place in the world that counts, that matters. We all have the tendancy to forget that we matter, especially when we feel inadequate because of the illness we suffer. But no one is inadequate. No matter how weak, tired or ill you feel. You matter- your life matters. You don’t have to do great things. All you have to do is just accept the life you’ve been given and do whatever you can to enjoy it. If you’re bedridden- open your window and listen to the birdsong. Invite others to see you and hear about their troubles and their triumphs; be an advisor, friend and confidant to them. There’s always something you can do to reach out to others, to bring value to your life. You just have to remember that your life IS valuable. No matter how hard it seems at times. No matter how many times you have to fall down and cry. Life is precious. Live it with a full, open heart. Just live.

Just a short one from me today; I haven’t been blogging as much lately as my brain fog symptoms haven’t been good enough to allow me the eloquence with which I like to write, and so rather than submit you all to drivel, I’ve spared you with silence instead. But that was never the plan, so no matter how long symptoms may lead to silence for, I will not remain silent. There are always stories to tell, there is always hope to share and light to spread.

So on that note- what is courage? Some might say it’s doing something adventurous like a bunjee jump or a trek through a snake infested jungle. They might also think strength is lifting heavy weights or pushing a bus or something extreme. But what of lifting your head off the pillow when you are weak and very ill? That’s strength. And what of having the courage to keep going day in, day out, despite a multitude of symptoms that alone would be enough to floor a person and make them give in. That’s courage.

So remember, “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ~Mary Anne Radmacher.

A few weeks ago, I read a story from a fellow blogger that really touched my heart. This lady most certainly lives her life with strength and courage, and even more than that, she has a bright, warm heart, she has optimism, she wants to help and inspire other people, despite all she has to deal with herself. So I asked her if she’d mind me sharing her story here and she kindly agreed.

So I share this story as a reminder to anyone who feels like giving in, like it’s all too much- you are not alone. No matter how bad things seem, there is a will inside of us all that wants us to keep on living, keep on trying, to lift our heads up off the pillow and to say in that quiet, courageous voice: ‘I’ll do my best. I’ll keep on living. I’ll do what it takes’.

So, whatever it takes- remember you’re not alone and remember that you are strong and courageous, simply for living the life that you do.

Laura ~

Here’s Candice’s story- from her blog “Infectiously Optimistic”

Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice whilst popping a handful of pills, I paused for a moment. I thought to myself, “How the heck did I get here?”
It’s a very good question that I’m sure many lyme patients ask themselves from time to time. Late stage lyme disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I’d even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, “Who is that?”.
Well, in light of Lyme Disease Awareness Month, I’ve been asked to share how exactly it is that I got here. This is quite a challenging feat, because I often wonder it myself. You’d think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we’re also on a journey like no other, and we tend to experience things that some people never experience in their entire lifetime. If you’re interested in hearing about just a portion of it, please bare with me while I reveal what it’s like to be a late stage lyme disease patient, and how it is I actually got where I am today.
Chapter One: The Subtle Beginning
I didn’t know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next “Bubble Girl”, because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn’t usually get. I can’t tell you how many times I’d been asked “Have you traveled out of the country lately?”. When I’d reply over and over again with “No, I haven’t.”, they’d begin to ask me “Are you sure?”. I almost felt like laughing. “Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night.”
Then the digestive issues began, and it was all downhill from there. I’ll spare you the gritty details, but basically, my GI system essentially shut down. I went about once a month. Enough said! It began to get harder and harder to eat, which was both confusing and embarrassing as a pre-teen girl. I’d go to the doctor and get xrayed, and the doctor would say “Wow…I don’t usually see this, and if I do, it’s in very elderly patients. There’s no room left for food in there!”. But he didn’t do anything about it, until it was too late.
By High School, all sorts of rumors had begun to fly around about me. My weight fluctuated based on how my digestive system was functioning, as did my appetite. Often times it was hard to get through lunch, and of course, gossipy teenage girls didn’t let that go unnoticed. I was too humiliated to say anything though. I mean, a teenage girl really doesn’t want to stand up on the bleachers and announce that her intestines are broken.
Chapter Two: Doctors Don’t Always Know Best!
I’m not quite sure what happened when I turned 16, but I have a sneaky suspicion that it involved a second tick bite (lord only knows when I got the first one). After returning from camp in the Santa Cruz mountains, I came down with “flu-like” symptoms and the digestive symptoms reached their peak. 4 days later, we went to Hawaii, where things continued to snowball. I remember thinking that my ear drums were going to implode as our plane landed, and I distinctly recall laying in a crumpled ball on the hotel room floor that night, clutching my stomach. It felt like someone had pulled the plug on my internal bathtub of energy, and it was slowly draining out.
Upon arriving home, we went back to the doctor. This is when I became a human guinea pig. They threw just about every digestive related drug (that you now happen to see on those lawsuit commercials) at me. They told me I needed to get more sleep. I needed to “wash my hands” and “drink plenty of water”. I wish life were that easy. They made me think that it was normal to feel like I was walking around with lead in my pockets and bricks in my shoes.
After conventional medicine had continued to fail us, we decided it was time to seek out some help from an alternative practitioner. He was wonderful, but I was an incredibly complicated case. He helped us to uncover that I had a boatload of food allergies. As we began eliminating them, my digestive system began to change a little, but scary things began to take place. My diet became smaller and smaller as my body began rejecting whole categories of foods. In hindsight, we weren’t educated enough on food allergies, so we weren’t sure what to keep and what to cut out. We had no idea what “gluten free” really meant, and I made epic mistakes like thinking that “rye” bread was okay because none of the ingredients said “wheat”. Perfect recipe for intestinal malabsorption. Despite eating mass proportions of what I thought was “safe”, the weight began melting off of me faster than butter in a hot skillet.
Chapter Three: The Hospital Stay From Hell
Before I knew it, I was 17 years old, 5’7, 88 pounds, and I was laying in a hospital bed. I barely remember my 10 day stay in the hospital. I honestly think I was comatose most of the time. I wasn’t aware enough to be scared. My intestines had gone into malabsorption, so no matter how much nutrition they pumped into me, my weight remained alarmingly low. My blood pressure was so low that the nurses would come in frantic in the middle of the night, flip on the lights, and discuss what to do with me. My heart rate tanked as well, and at some point during the stay, I don’t remember it, but I went into atrial fibrillation. I went into a-fib at 17 years old. Since they didn’t know what was going on and didn’t have a clue how to fix it, they blamed it all on the weight loss. The only thing they couldn’t tie in to the weight loss was the fact that my liver enzymes had shot through the roof (up in the 300s!), and even though my charts note that they were concerned my liver would start to give up on me, they chose not to bring it up. Despite my blood pressure being 70/30 (half of what it should be) my heart beating at 40 bpm, and my liver under dire stress, they still put me through the wringer with gastrointestinal tests. All to tell me that “your digestive system isn’t working”. Thanks Sherlock. Food moved through my system 6 times slower than an average person’s would, that means when I sit down to breakfast every morning, yesterday’s breakfast has just left my stomach, and is beginning to digest. Bet you can guess what they did about it though. Nothing.
So, I took matters into my own hands. I started to educate myself about diet. I learned what it really meant to be gluten free, dairy free, and essentially allergen free. Unfortunately, I also had to cut out fats and animal protein, because my broken bowels decided they just couldn’t do it. I’m happy to report though, that I did bring my weight up to about 100 pounds, all by myself. That’s still about 30 pounds underweight, but it was better than 88!
Chapter Four: College, or Something Like It.
So, despite having no energy and a really whacked out diet, I had the bright idea to leave home and go off to college. Everyone said that there wasn’t anything serious wrong with me, so in theory I’d be okay, right? Wrong. It was quite the experience. Because of the issues that were beginning to plague my body, I spent literally all of my time sleeping, studying, and cooking. It was horrible. I met some of the most amazing people I’d ever met in my entire life, but I never got a real chance to be around them. I was far from the typical “college student”. My life was a living nightmare, that I was trying desperately to grin and bare. I had to cook every two hours in the community kitchen, just to keep on weight. I had to fit going to class inbetween my eating schedule, and ontop of it, had to find time to actually do the work. I found myself trying not to cry as I stood at the sink, rubber gloves on my hands, rinsing dishes as I tried to both eat and clean up dinner at the same time. I tried to focus on the book I had laying open next to the sink, but all I could focus on was the sound of everyone laughing down the hall, as they ate pizza and played card games together.
I believe that both life and Lyme are all about lessons. Boy did I learn some in college. I now understand that my priorities were royally messed up. As I focused on maintaining A’s in all my classes, I started getting F’s in health. My bladder started to go on me, so I started to have to sit on the end seat in the giant lecture halls, or else I couldn’t stay. I couldn’t make it across the aisle in time. This meant that I also had to find time to cook, eat, study, get to class 20 minutes EARLY, do the assigned work, and sleep. I was often so exhausted that my whole body burned, from head to toe. I was so tired it was often hard to breathe. My kidneys would send shooting pains through my mid-back when I’d least expect it. I had chest pains as I rushed through each daily task, and often woke up in the middle of the night shaking, in a cold sweat.
My body finally said “enough”. I woke up one morning, and couldn’t move. I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn’t reach my phone so I laid there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom’s number, I tried to stand up, and that’s when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on. I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn’t take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said “Hello, I’m your spleen, and I’m really pissed off!”.
You’d think that’d freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week. I believe it was 3 or 4 days, and things were continuing to get worse, and I could barely stand up. I didn’t tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven’t been back since.
Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After 1 week of laying in my parent’s bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I’d previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.
Chapter Five: An Uphill Battle
I celebrated at first. I thought, “Finally, I know what it is. I can treat it, get better, and move on with my life”. Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted 10 days on it. I came to find out that treatment for Lyme is much like treatment for Cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That’s when I began to have spells where I’d start to black out, and get stuck in-between that phase between consciousness and unconsciousness. On the tenth day, after laying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor’s appointment, I called it quits.
Since then, I’ve tried a multitude of alternative treatments. Some of which have also sent me straight to the hospital, and others that haven’t had much of an effect. Things began to snowball again 1 year after diagnosis, as my immune system began to become increasingly suppressed. In May of 2009 I contracted an 18 day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for 4 days straight, because it just kept getting worse. All they could do though was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.
Chapter Six: And The Surgeon Said “Oops”
After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for 1 whole month, only to develop autonomic seizures, dysautonomia, and chemical sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave the house. We needed to take some sort of action, and my doctor was really at a loss at what to do, so he decided to see what would happen if he just slammed my body with IV drugs, to try to know out massive loads of infection. He warned me that I’d become alarmingly sicker, but he promised that I’d come out on the other side.
So the doctor set me up to have a portacath surgically placed in my arm (usually they’re in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to right outside my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anasthesia and a small dose of ativan to keep me calm while they cut me open and threaded a tube to my heart. This is something that I probably won’t be signing up for twice.
The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me though, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145, and any time they tried to sit me up I’d have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery. I laid there for two hours, while nothing improved. They tried to tell me that it was “probably normal”, but I insisted that though I feel like crap on a daily basis, it’s usually not THIS bad. They decided to xray me just in case then, and upon viewing the xray, the surgeon said “Oh my God, how’d that happen?”. There’s one word that you never want to hear while in surgery. It’s “Oops”. There’s also three words you probably don’t want to hear either. “Oh My God”.
It turned out that instead of the surgeon threading the catheter TO my heart so it could sit comfortably outside of it, he accidentally lodged it deep inside of my heart, where it certainly was not meant to be. So, I had emergency surgery (awake) to have the port removed, and at that point, I vowed to never have elective surgery again. I now have scars on my arm to remind me why.
Chapter Seven: Just The Beginning.
That brings me to where I am today. I’m treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It’s going to be a long, trying road, but I know he can get me there. I still can’t leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it’s at least comfortable to sit in a chair again. I no longer feel like I’m dying. I know this doesn’t sound like a lot, but for me, this is huge. I have the upmost faith that I can get through this. It’s just going to take a whole lot of strength, patience, and optimism. This is truly a humbling experience. At times it’s hard to see the light at the end of the tunnel, and to focus on what’s important, but at the end of the day I still go to sleep and thank God for every day that he’s given me, and for every breath that I take, even if it’s a labored one. The biggest lesson that I’ve learned is that it’s really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life no matter what the circumstances are. I may not be able to leave my house, I may have to eat the same liquidy foods everyday, and I may be stuck laying on the couch, I may have a list of 57 symptoms, but I’m still optimistic. And one day, when I’m back out in the world, truly living again, nothing is going to be able to bring me down.
So, on that note, I think I’ll end here. Please forgive me for how long this post is, and thank you so much for baring with me through it. But truth be told, it’s really just a snippet of what I’ve been through. That’s why I’d like to take this opportunity to blog some of what my daily life looks like, but to also share with you those little things that keep me going. By doing so, if I just reach one person, or educate one person, or make just one person smile, then my mission is accomplished. Take care everyone.

I’ve just started reading this book, and I think it’s going to be great, so I decided to share parts of it with you readers as I go through the book.

So, to begin with:

“Getting well or overcoming illness doesn’t necessarily mean cure and it doesn’t mean living forever. Nor does it mean a list of dos and don’ts, pills to take and foods to avoid. It means improving our condition and gradually making our lives happier, healthier and more fulfilling.”

That’s what personally, I’ve always been aiming to do. I know I’m ill, I’ve known it for long before it was officially diagnosed as POTS on 9th April. Some things you just feel, when you are sensitive and in tune with your body. But I’ve also known that I have a strong determined spirit, and whilst the trials and tribulations of illness can certainly dent it at times, I vow it will not be broken! I’ve always determined to do whatever I can do to live my life to the fullest I can, despite having dysautonomia.

So, right from the first couple of pages I thought- yes, I like this book!

I also liked this:

“Unlike some other self-care books, this one doesn’t say we make ourselves sick or think ourselves well. It doesn’t say “Take control of your life” while glossing over the difficulties involved. It doesn’t even say “Follow your Doctors orders” Instead, it gives a practical, 5 step program for recovery.

1. Slow down: save some energy for your body and your life, instead of giving every last ounce to work, worry, other demands or entertainment.

2. Make a change: Change something in your life that’s damaging. No matter how small, any successful change builds self confidence and makes the next change easier.

3. Get help. None of us can do it alone; life is a co-operative effort. Learn to find and ask for help.

4. Value your body and your life: Listen to your body and treat it with respect. Fill your life with more pleasure, love and reasons to live.

5. Grow up: Educate yourself, take responsibility, be assertive. Accept yourself the way you are, but don’t give up on getting better.

Sounds good to me. I’m looking forward to reading the rest and sharing it with you readers. But for now, I’m going to start using the program, and do steps 1 and 4, by listening to what my body is telling me and having a nap. I’ve felt exhausted all day and been stubbornly trying to just keep going just because “I’m supposed to”. Well, says who? Sometimes I am too hard on myself, even after all these years. There’s no shame in needing a nap and it might just refresh me and help me have a better evening. So, much as the book has interested me, I’m going to pay attention to my body and take that nap right now. 🙂

“But there is suffering in life, and there are defeats. No one can avoid them. But it’s better to lose some of the battles in the struggles for your dreams than to be defeated without ever knowing what you’re fighting for.”
Paulo Coelho

I keep telling myself that all of this suffering has to bring upon some progress to take my life back from Dysautonomia. I read somewhere that without any struggles, there can never be any progress and I second that;) As long as I try my hardest everyday and struggle my way through the hardships of living with dysautonomia, I’m making progress. It maybe baby steps to reclaim my life, but they are steps in the forward direction!
I guess what I’m trying to say is this; although the struggles can just beat you down sometimes physically and mentally, maybe try to remember that because you’re experiencing these struggles, you’re still in the game!!!!!
Never quit! Together we can make it through another day:)

I think I’m coming to terms with being ill now. I finally got confirmed as having POTS on April 9th. (Colleen- how was your prom? I thought of you!) It was a massive relief after all the years of fighting to be believed.

Despite the fact I’ve always suspected I was ill, I still find myself feeling sad now that I know I am- but I think I am coming to terms with it more now. I am looking for the positives in it- something I always (thankfully) tend to do when faced with adversity. I am thankful for the new friends I have made and continue to make. I am thankful for the opportunity to use my hobby of writing and my determination to reach out to and inspire others.

I still do ‘normal’ things but I never feel entirely ‘normal’ because I am always dealing with symptoms to some degree. But- that’s okay. I won’t let those symptoms rob me of my life. I’ll keep living it, and be kind to myself/my body by resting and taking it easy as much as I can- but I’m not going to turn down invites to things. Even when they scare me just a bit because I don’t know if I’ll be ‘well enough’. Even if afterwards I ache and feel exhausted. Because those are just symptoms- and at least I am living.

My boyfriend keeps asking me to go cycling with him, and the very idea of this terrifies me. TERRIFIES me! Because, the last time I did it, before I knew I had tachycardia, I found it soooo difficult. I was so slow that a child approximately 7 years old on a little BMX overtook me. Every muscle in my body ached and my heart was going crazy. But you know what? I cycled FOURTEEN MILES. Even though it hurt like hell and even though I was slow as a snail. The reason? I refused to admit defeat. I refused to give in, so I just pedalled- through the pain, through the tachycardia, through the rain and the cold and the frustration. I hated every minute, I felt like shit afterwards, but I still did it.

I know not everyone can do things like that and I’m not advocating pushing yourself further than your capabilities, but what I am all for is not giving in. We all have limitations, but there are ways we can get around them even if we can’t transcend them.

I don’t really want to get back on a bike, because it was so unpleasant. But a stubborn, fighting part of me is saying- try it just once more. A shorter, easier ride (I didn’t even mention how bumpy 7 miles of this ride was!!) on a nice day in warm sunshine- you might just surprise yourself.

So, maybe I will. If I hate even that, maybe then I’ll sell my bike. But if I can cycle 14 miles in the rain on stony hard ground and still come out the other end okay, then I can go on a short bike ride on a nice day and see if it isn’t nicer. At least I’ll be strengthening my calf muscles!

So, I guess what I am saying is yes, I may be ill but I have an attitude. Being ill may slow me down, but it won’t stop me. I’ll be like the snail, slow, lugging around my ‘shell’ (whatever symptoms I may be dealing with at the time) but still living my life- and in the meantime, perhaps I’ll leave a pretty silver trail in my wake. I might not be able to ‘blaze a trail’ but I’m content to just live my life at the pace that feels right for me, and those that take the time to really notice will see my little silvery trail and smile.

Every little thing makes a difference. You might not feel like it does or think that it does, but it does.

So yes, I’ve come to terms with being ill because I’ve made my decision. An illness I may have, but I also have a LIFE and a determined, fun free spirit. So no matter what, I am living my life to the full.

Even if it does mean getting on a bike again one day… :/

Lyla posting

When you feel like giving up, remember why you held on for so long in the first place.”~Unknown

WOW was my first response to this  quote. Sometimes I do forget how much I have invested in making my life/health better and it would seem so silly to want to throw all of that away because I tripped up the stairs or something silly like that;)LOL But, at times I do!

 I would like to challenge you to really think about all of the work you have put into getting more healthy both physically and emotionally the next time you feel like you can not go any further.  Because I do believe that there is a strong part of us inside that will hold on no matter what!!!! Embrace that part of you:) We are some” No Limit Soldiers” and are stronger than we’ll ever really know!!!

Liz posting!!

So I have disappeared for over a week now. That is because it was one of those days last week.  Though one of those days quickly turned into one of those weeks if you know what I mean? I have recently got a new diagnosis of a condition called chiari 1 malformation, I wont go into many details but the diagnosis was very overwhelming for me to cope with. Day after day I was sobbing at the thought of possible brain surgery in the future and progression of symptoms that can be life threatening. Just like with Dysautonomia I have met great people who have helped me to understand chiari and how to cope with it day to day.  Along with Chiari I recently found out I have hypermobility joints which doctors believe is the cause of my widespread pain. I luckily start physical therapy in a month and am getting a skin biopsy to be tested for Ehlers Danlos Syndrome. I will keep you all updated with my journey. I will do another post soon on common medical conditions linked with Dysautonomia in hopes that some of you all can get quicker answers from your doctors.

As many of us get diagnosed with several conditions each one can be more confusing and overwhelming to get over than the others. It is fair to say we will have our grieving periods and who can blame us for how much we have been through with medical expenses, doctors, unsupportive family & friends all while your dealing with a debilitating illness(s)

Though there is a light at the end of the tunnel, even though it may seem nothing ever gos rite.

Spring is here!! A beautiful time of the year. I have already made goals for myself to be pro-active and to live everyday to the fullest.

I would like to share a few goals I made for myself with you all….

(1) I loved Kyli’s advice so I went out and bought a sketch pad/journal to jot and draw in when I need to vent about my health.

(2) I made a goal on the potsie channel to find a part of yourself you lost from Dysautonomia and to spend one day doing it whether it’s drawing, photography, dancing, or going to the mall. I now inspired myself to bring the artist out in me I lost many years ago. I will post drawings later for you all to see. By the way Laura I loved your reply video…Great Job!!

(3) Since I am unable to go out most of the time, I love sitting down and playing board games with my husband. Call me old fashioned but I love Monopoly, Life, Yahtzee, & Jenga. My husband and I just got operation to play recently to joke about my possible surgery in the future

(4) Picniks are also fun during the spring  just find a sunny day. Lay a blanket in the grass sit and have a light meal. Lay back look into the blue sky, make a day out of it and listen to the nature, the breeze and take it all in. I’m planning to do that and a egg hunt for Easter

(5) I love watching cartoons!! The bright colors animated pictures and comedy keeps me smiling & thinking positive. Even if cartoons is not your thing, comedy movies in general is always a way to put a smile on your face.

(6) While the weather is nice, open windows in your house. Let the breeze come in, bake cookies and read a book. The sweet smells and relaxation with a gentle breeze is very stress relieving.

I know allot of this sounds like I have a princess & pony mindset but it helps get me through the days. It is a list of easy, relaxing, fun ideas to enjoy life while sick. Please share any ideas you have that can be added to the list 🙂

Hope to hear from you all


Laura Posting.

I keep telling myself that no matter what, I am going to live my life to the full.

But I wonder, what connotations does that conjure up in others? What does the phrase ‘living life to the full’ make you think of?

I could understand why some people with chronic illness might think ‘huh, this illness has robbed me of so much I couldn’t possibly live life to the full. That’s for people with unlimited amounts of energy and the freedom to do what they want without having to worry about their symptoms.’ But that’s just a viewpoint on what it means- not what it really means.

So I guess what I am telling myself is that I am going to live my life to my version of ‘full’.  So I’d be interested to know- what would your version of full be? And I don’t mean the things you can’t do that you wish you could, and if only you could then you’d ‘live life to the full’, I mean the things you can do even though you are ill. Things that you enjoy doing, even though you are ill. Things that give your life purpose and meaning, even though you are ill.

Because being ill doesn’t mean your life has to stop, dead.

So for me, living life to the full is…

Having good relationships with people. Anyone can have that, regardless of state of health. I want to have a life filled with loving relationships and laughter, to care and genuinely be cared for in return. That’s important and so valuable to me.

I want to reach out to others, offering inspiration and hope. That’s why this blog exists.

I want to keep my mind active, by reading and learning lots, by writing. That’s why I read, watch documentaries, enjoy intellectual discussions, and do my own writing as and when I can.

I want to go out and have fun. So I carefully select times when I feel I can do that. I invite friends. I organise parties. I do so at times when I have little to nothing else to do so I know all my energy can go into that. But sometimes, I go to parties when I’ve been quite busy- because even if I feel physically drained afterwards, emotionally I feel revived- and I can always rest my physical body. Even if it takes me 2 weeks to recover from a party, I’ll be remembering the fun that was had for months or even years to come.

I want to travel and see the world- so I am going to Peru in November, by myself. Even though I’ve never flown long haul. Even though I don’t know how my body will cope with the altitude. Even though I’m terrified about whether I’ll manage, cope. What about the brain fog, how will I keep all my important documents and belongings together? What if I get dizzy and can’t breathe? Well I’m going anyway and I’ll find out! If I can’t then I can’t- I’ll drop out of the climb or whatever. I’ll enjoy other sights whilst doing other things. What matters is that I give it a try! And if I have to push I will push. If I end up feeling exhausted and doing much of nothing for months afterwards, it will be worth it for the memories.

Basically, I don’t know how long I’ve got this body for. It might not work as well as I wish it could, but I’m not going to let that stop me squeezing the zest out of life.

I will party, travel, write, learn, find friendship, love joy and laughter. Dysautonomia might make me feel like crap but it can’t stop me. Even if I was in bed and couldn’t leave the house (and I did go through a very tough period where I couldn’t do much at all, although I didn’t know what was wrong with me at the time- and it wasn’t a brief period either, it lasted more than a year) I would find a way to feed myself joy, happiness, laughter- the nectar of life.

So- if you were to live your life to the full- despite dysautonomia or whatever illness you may have- what would you do? And if you are already doing so, what are you doing?

I think my motto in life now is: I might have an illness, but I also have a life!

True, this illness might be my companion in life, it might follow me around wherever I go, it might even dictate to me at times and stop me from doing some things, but there’s always so much more life has to offer. So if it stops me doing one thing, heck I will find another!

So, forgetting about all the things you have lost and mourned (because it’s only natural to be sad and go through periods of mourning)- what are you going to do to live your life to the full- that’s your full? How will you drink your fill from the wonderful well of life- find the blessings and the gifts each day has to offer?

Keep asking yourself how, keep finding the answers- hold the hope, joy and determination in your heart and never let it go. DARE to dream. DARE to transcend your limitations. Physically, you might not be able to- but your mind is free- so give it wings and FLY.

Laura posting.

I’ve just started reading “Love, Medicine and Miracles.” (Bernie Siegel).  I’m going to post extracts from it that are inspiring and induce hope- because I believe those things are so important to hold on to for all persons living with an illness.

So, the first one- addressing doctors.

“We must realise the pain people suffer, and redefine our goals. What is healing? Is it a liver transplant or cure of an illness, or is it getting people to have peace of mind and live life at its fullest? I know quadraplegics who can say “Fine” when asked “How are you?” because they have learned to love and give of themselves to the world. They are not denying their physical limitations but rather transcending them.”

So, think about that. Dysautonomia does bring forth all sorts of physical limitations. BUT- you can still live life at its fullest. There might be all sorts of things you cannot do, as there are all sorts of things a quadraplegic cannot do. But you can still love- you can still find joy, you can have a life worth living- despite your physical limitations.

The only question is- will you choose to? And if so, how will you choose to transcend your physical limitations? Will you be like Colleen (in the previous post) and be determed that you WILL do something, no matter what it takes? Will you be like Kyli,  Leah, Shannon, Gwen and Paige- reaching out to others to spread awareness, friendship and hope? Will you be like Michelle who writes a deliciously funny and popular blog all about life with dysauotonomia? Or like Lyla who is so determinedly raising awareness and reaching out to others in the spirit of friendship? What will you do to make a difference to yourself, to stand up- maybe not always physically- but emotionally and mentally- for yourself and your life? Because dysautonomia or not, you still have one.

The fact that you are ill may never change- but your attitude can. Will you choose to be a victim or a victor of your illness? I know which I’d rather be…