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Colleen’s story about her determination to get to go to the prom- a heartwarming and inspiring story of how courage and determination can overcome the odds!

Hi I am Colleen and I am 17. I reside in Pa and suffer with the lovely condition of POTS. I also have mitochondrial disease, which is a fun one too. I have to admit it has been a tough 3 years since my diagnosis but I strive to live as normal of life as I can (you know cause 2 months recently in the hospital is SO normal haha) Anyways. Even though I have a chronic illness I try to live laugh and love to the fullest. Recently I did get asked to my high school prom. And here is my story to that. One day I was sitting in my hospital (the usual lol) and found out that my prom was going to be in April. I have been out of school for 2 ½ years. So I started looking all over the internet for a dress (mind you I didn’t even have date yet). I was determined to go if it was the last thing I would do.
To “normal people”, if that’s what they call themselves, I may look desperate but I didn’t care. I wanted to be able to actually do things every teenage girl looks forward to. Well anyways I mass-emailed, texted and called my entire contacts list searching for a date. When I almost gave up hope, I happened to get an email from my friend Steve who I have not seen in 2 years. The email wrote “Colleen would you do me the honor of accompanying me to the prom.” My heart melted. That week I went out to find a dress. It was perfect. My prom is April 9th and I’m so excited. I would like to let you all know that it is possible to live to the fullest even though we have a chronic illness. There is hope that things will get better. You just have to believe. Even though I may have to sit through the entire prom, I get to go and feel like a princess like we all, and I mean ALL we deserve to be, healthy or not! <33


Laura posting.

I was thinking just now about the wonderful new friends I’ve made who have dysautonomia. How much understanding and support we share. What great people we are.

I started thinking to myself and wondering what life would have been like if I hadn’t gotten ill.

But- I wasn’t thinking ‘if only I hadn’t gotten ill then I could do x, y, z’. No. I was thinking- if I hadn’t gotten ill, I wouldn’t be the person I am now and I actually really like the person I am now. Don’t get me wrong, I don’t like a lot of the symptoms and frustrations that come along with having dysautonomia but in a way, because of them I am a better person. Because of them, I am more compassionate. I can relate to suffering in others because I have suffered myself.

If I hadn’t gotten ill and suffered the resulting depression, I would never have gotten into my field of work (hypnotherapy).

I went through a really tough time when I was first ill. I didn’t know what was wrong with me and I was terrified. I was nauseous all the time and could barely eat. I lost a stone in weight and I was already very slim to begin with. The doctors couldn’t find anything wrong and put it down to ‘stress’ and ‘panic attacks’. Family members asked me if I had an eating disorder. I wanted desperately to be able to enjoy food again but I felt sick to my stomach every day. I was panicking because I was terrified I’d never get better because no one, least of all myself, knew what was wrong. Every strange symptom I had, I blamed myself for. I felt weak, stupid, a failure- like I was creating it all myself by ‘panicking’. I had no idea I had a physiological problem causing all these strange symptoms!

But- because I thought I was to blame, I didn’t end up suffering with the helplessness a lot of people feel when they get a diagnosis and know something is ‘wrong’ with them. Because I thought it was my fault- I took action! I read all the positive and inspiring ‘self help’ books that I could. I cured my own depression by giving myself hope, by becoming emotionally strong- positive- a fighter. It took time (years in fact) and tenacity, but I did it!

If I’d never been ill in the first place, I would never have found this depth of strength and inner light within myself. I’d always wanted to reach out to others and inspire them, but if I’d never been ill, I would probably have never found a way to do so. But now? Now I can. Because I understand suffering- I’ve been there. There was a time when I honestly felt like hope had died within me and that things would never get any better. I remember the moment. I lay on my bed in the gloomy light after winter sunset and I just didn’t want to get up. All I could see ahead of me was a life of endless suffering and if that was to be my life, I didn’t want it.

But even in the most awful of circumstances, hope can grow. So if you or anyone you know is suffering a lack of hope, don’t despair. Things can and do get better. It takes time. It takes patience. There are ups and downs. But you will find that you have an inner strength and fighting spirit you never knew you had. Let it drive you on, fuel you forwards and you never know what you might achieve. Even if it’s something that to others seems insignificant, like getting out of bed. If that’s significant to you and something that you find hard but you manage to do it, then that’s more courageous and inspiring that adrenaline junkies bunjie jumping for a thrill. Never sell yourself short for all the little ways in which you choose to go on living and surviving each day. You are stronger than you know. Let the peace and inner strength from really believing that wash over you, and spur you on despite your illness.

Beautiful blessings are here in this world for everyone, no matter what.

Don’t you ever forget it!

Laura Posting.

Inspired by Kyli’s post

Regardless of whatever the limitations we have might be- we are worth getting to know. There is a person underneath the illness who deserves to be seen! It might be hard at times for that person to be recognised, but they are there. Perhaps it takes a special kind of person to see that… which is why I am grateful for the good friends (and my boyfriend of course) that I do have. Even if they can never truly understand, at least they can see beyond my illness to the great person that is ME!

So remember- no matter your symptoms, no matter your hardships, no matter what you feel dysautonomia has taken from you- you are still you- and you are still worthy of love, laugher, happiness, joy, friendship and good times. Don’t let it rob you of that.  I know it’s not always easy when the symptoms cause physical and emotional pain. But we are “No Limit Soldiers” if we choose to be. Look out into a world with no boundaries. Focus not on what dysautonomia has taken from you, not at what you can’t do- but at what you can do- with all your courage, your compassion, the unique voice that is yours. Every single one of you makes a difference. Every single one of you matters.  Never forget it.

Lyla here,

“While walking in the midst of despair from the day to day struggle with dysautonomia; there still lingers that ray of hope that promises a better day tomorrow…..”

I recently came up with this quote during a very dark time with my dysautonomia. I wanted to share it with others because it has helped me get through another day!

Laura Posting. Hope everyone has had a wonderful weekend!

So. Attitude.
This is something that has been going through my mind on and off, at times without me consciously realising it. I’ve always been a positive person, but at times seeing what dysautonomia can do to people, it’s bloody frightening!

I count myself incredibly lucky that I can still walk (for miles) and lead a relatively normal life on the surface. Even though I have to handle pain and fatigue and various other symptoms in order to do so, I can handle that. Some people don’t get that choice. Some people can’t walk or even stand up. That must be terrifying, heart breaking and so terribly frustrating. I don’t know how I would deal with that. I HOPE I’d deal with it how I’ve dealt with every adversity in my life- with inner strength, determination to fight and improve and, failing that, determination to be as happy and positive as possible, no matter what.

That’s what I find so inspirational about many of the new ‘POTSy’ friends I have made. They have it much worse than I do, symptoms wise. But they are ALL so positive, such an inspiration to me and to others.

So what all this got me thinking was this: no matter what POTS/dysautonomia does to our bodies- even to our minds with the dreaded brain fog- it CANNOT change our attitude in how we deal with it. Of course, it’s only natural to get fed up, dispirited, anxious and depressed at times. That’s all part and parcel of dealing with a chronic illness. BUT- it doesn’t have to be that way always. We can build up an inner strength and spirit. We can determine to look for the silver lining of every cloud.

It was Victor Frankl who said that the last of the human freedoms is choosing our response to what life brings us. When imprisoned in a concentration camp, he noticed those that died soonest were those that had given up hope.

So, no matter what battles we face with dysautonomia, let’s vow to NEVER GIVE UP HOPE.

Because, no matter what happens- life is still beautiful. It’s still out there. We just might have to experience it in different ways than we expected. We might have more hardships to deal with, but that doesn’t make life any less wonderful.

We have the freedom to choose how we respond to dysautonomia. Let’s respond with courage in our hearts and the conviction that no matter what, we will not let it beat us. No matter what, we will see the rainbows through the rain, emerge from the shadows into the sun.

It can only win if we let it. Lets not forget that the body is a temporary dwelling. The spirit is what’s real, true and pure- and dysautonomia can’t touch that, not really. It might seem like it can sometimes, because we’re only human and we do get upset and disheartened. But we can overcome that if we remember- we are more than our bodies. We are amazing beings with a vast capacity to love and to endure. Dysautonomia, whatever it might take away from us, cannot take that away.

I owe thanks to my inspirational POTSy friends and to my amazing boyfriend for fuelling the ideas and feelings in this post. He played me a tape today, Tony Robbins interviewing Norman Cousins about diagnosis, illnesses, health and the attitude of one’s mind. Norman said what we must do is not deny a diagnosis- we can acknowledge that we have something. BUT we can defy the diagnosis. What he meant by that was- realise that we are much more than any illness we might have, and that with the right attitude, we can prevail against it, no matter what.

Gwen Posting

When I was first diagnosed with Dysautonomia my world came crashing down around me. At the time, I was in marching band and loving it! I was planning to start ballet class when band season was finished (I had been a dancer since the age of 3) because both band and dance were too much. Marching season only had a few weeks left in it when I first passed out and was diagnosed and somehow, someway I pushed my way through and finished my sophomore season of marching band in high school. My plan however of starting ballet back up didn’t happen.

My not being able to start ballet up again caused me to have this really crazy and new outlook on life because I was now sick. I began looking at my life as being, “new.” I also began listing in my head everything that I couldn’t do anymore because of POTS.

Can’t Do List
can’t dance
can’t drive a vehicle
can’t do marching band
can’t physically attend school
can’t play sports
can’t go shopping
can’t go to parties
can’t date

The list went on and on…

A lot of the “I cant’s” I hadn’t even done before I got sick! For me it was simply just the fact that I was 16 years old and I was sick, sick with something that was rare no less. My life was new and it stank!

What’s wrong with the picture here? Is your life REALLY “new” when you are diagnosed with an illness?

I believe that yes there will be things that you won’t be able to do because of your illness. But, does that mean that you will always never be able to do that something? No, it does not. For instance, when I was first diagnosed with POTS, there was no way I could dance. However, five years since my diagnosis I can choreograph some small pieces.

The day you are diagnosed, do you say to yourself, “Well I am now sick, so I am going to forget all of my hobbies, favorite things to do, and everything that makes me, me.”

No, that would be completely silly! Of course you will find new hobbies and new favorite things to do. However, you do that throughout your entire life, not just when you are diagnosed with an chronic illness. You will find things about yourself that you never knew before. For example, I never knew just how strong and brave I can be. I never knew what it would take of me to not take things for granted in life.

What I am trying to say is, is that having POTS doesn’t mean you are a completely new person. You will discover things about yourself that you don’t like and you will change them. There will also be some new hobbies and favorite things to do to keep yourself busy since your days might be a little more free then they used to be. Having POTS, or any form of Dysautonomia or chronic illness doesn’t change you completely and that is what is important for you to remember at the end of the day!

Remember: You may have Dysautonomia, but the Dysautonomia doesn’t have you!