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 think when you have a chronic illness, you appreciate ‘little moments’ more. So, here’s one I just experienced that I’d like to share with you.

I was working doing my counselling/NLP/hypnotherapy. My client is sitting in the chair to my left, I’m teaching him an acupressure technique for subconscious healing. He’s holding the acupressure points while I am reading out the healing statements he is to focus his mind on.

Dark, gloomy clouds gather overhead. Rain begins to tumble down, pattering at first on the glass roof- moments later, a cacophony. I watch it bouncing off the tiles of the bungalow roof at the bottom of the garden. Shards of sunlight appear through a break in the clouds- overhead glints a rainbow.

As my client reaches the final healing statement the rain stops. There is profound silence, almost breathless. Almost like the weather knew… was pouring down as he moved through his grief- silenced as he found his peace.

The rainbow glimmers overhead in the sky- perhaps a sign. After every storm, there is the rainbow. The light always shines through in the end. The silence, peace, holding us in comfort. We sigh.

Kyli Posting!

So, the other day I was feeling very sick and very overwhelmed. In the last year I’ve gotten better at pushing through days like that – distracting myself from how bad I feel and moving along.

On this day though I just couldn’t do that. I felt so weighed down with fatigue and stress. I was weaker than I’ve been in a long time and on top of that, nauseous and unable to eat much. (That’s a bad combination of symptoms!)

I decided I would have to do something that I haven’t done in over a year.

I’d have to find my “emergency notebook”, go outside, sit in my backyard (which I used to call my “oasis”!), take a few deep breaths, and focus on nothing else, but the words on the pages.

My emergency notebook is something I created about four and a half years ago in the beginning of my POTS journey. I honestly don’t think I’d have survived without it. I’ve used it as a source of comfort and reassurance time and time again.As my symptoms and life have changed, I’ve edited the words in the notebook, but the underlying message has always been this:

“Everything is going to be okay.”

“This too shall pass.”

“You don’t have to worry about doing anything or being anywhere right now.”

“Just breathe.”

On one of the pages is a “ticket to do nothing” that I drew. Just a big rectangle that says in the middle:

“TICKET TO DO NOTHING”

And then underneath that, a list of pots-friendly, comforting things I can do for myself on a day like that.

Things like watching my favorite comedy shows in bed or if I’m up to it, a warm shower and some aromatherapy (I love to turn my bathroom into a spa with candles and all of my favorite products). A good book, my favorite snack. Or depending on how I’m feeling, spending some time with a family member or friend just watching movies or resting together (that friend is usually my mom!). Anything that makes me feel good, basically!

I give myself permission not to worry about anything; health-related or life-related. Not to put pressure on myself to get better for other people (like if I have plans that I don’t know if I’ll be well enough to attend) and to just RELAX. To do nothing at all.

I also have a page in my notebook that is there for me when I’m having an episode. Fortunately I haven’t had to read it in awhile, but it’s been such a help to me in times when my blood pressure is extremely low, my heart is racing, and I can’t think straight. It says something like:

“Kyli,

Everything is going to be okay. This is just an episode and it will pass. You do not always feel this way. You’ve had this happen before and you always get through it. Just relax. Drink some water, eat some salt, and prop up your legs.

Call someone and talk with them.

Deeeeep breath! You will get through this! I promise.

-Written by Kyli, on a much better day!”

I know it may sound silly that I’m writing letters to myself like that, but the truth is when you’re dealing with chronic illness you quickly learn that you HAVE to be your own best friend.

For years I wished that other people would find the right words to comfort me and make me feel better and then, suddenly, four years ago I realized the person who was most capable of making me feel better was ME!

No one has a better idea of what makes you feel good than yourself and when you’re chronically sick, I think it’s vital that we hold our own hand through the process and be good to ourselves. Often we feel like we have no one on our side – our doctors, our family, our friends, society in general – but that’s okay if we have ourselves.

(& of course, we have each other!)

Anyway, I thought I would share that with you and hopefully inspire some of you to make your own “emergency notebook”. Maybe a better name for it would be a “comfort notebook” or something like that. 🙂

I’m actually going to be adding to mine this week. I’m going to fill two pages with pictures that make me smile and feel relaxed – the countryside, mountains, a sunset, dragonflies. Maybe even some photos of my closest friends.

Does anyone have any other ideas? 🙂

Laura Posting

Words have the power to both destroy and heal. When words are both true and kind, they can change our world. (From Facebook Daily Zen).

I wish people would remember that more often. Yesterday, a friend sent me an email that a friend had sent her, and in it this person was basically saying ‘Well when I was ill and going through what you’re going through, I just put mind over matter and got myself up and about and then everything was fine, you should do the same instead of feeling sorry for yourself and letting your illness win.’ They even ended it with love and a desire for my friend to be happy.

Hey, I’m a big advocate for positivity. For being determined, for fighting, for never letting hope die. But I think it’s also very important to accept the illness too, and the fact that sometimes, there will be days when you can’t do much and there will be times when you feel down and sad! It’s a very delicate balancing act, and words like that just deny the suffering part of things and make a person feel as if they almost have no right to be in pain, to be sad. That they should just ‘suck it up’ be ‘stronger’ and fight through it.

Sometimes though, you can’t. And true strength comes from recognising that, accepting it, and then working on being as mentally and emotionally positive as you can be despite it.

Sometimes, I think people with chronic illness (or even an illness) who have been lucky enough to be able to lead relatively normal lives are even less compassionate and understanding than healthy people who’ve never been ill. They mistakenly believe just because they could do that, then others should be able to- and so they have no empathy for those that can’t. They judge them, and in this judgement, they are harsh with their words. Maybe it’s because they are scared of ending up that way. Maybe it’s because they never faced up to their own pain but blocked it out, shut it down. Perhaps it threatens them to see someone willing to embrace their emotional pain and be real about it.

I don’t know, and quite frankly, I don’t want to know. People like that can, as far as I am concerned, just go and get on with their lives and leave their advice- however well meaning it might be- the hell away from mine!

Lyla posting…

Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” — Bill Cosby

I thought I would share this quote as a reminder to try to keep a humor in your life even through the dark times;)

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”
I believe that this quote has a lot of meaning for ALL who struggle with dysautonomia. We must persevere all though at the moment there are not many treatment options for us and the future may seem bleak.
Every single day medicine is taking huge strides in finding new information and medications. I know that that sounds easier said than done, but the HOPE for a better tomorrow is worth the daily fight. I don’t know, but what I do know is that this has helped me and hopefully it can help someone else!!
🙂

Michelle Writing.

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is and how sick I actually am.   Why I’ve chosen this path is complex.  I’m not completely sure I can identify all the reasons why I do it, but I’ll try.

I know part of it is an attempt to shake my fists at the universe and say, “You can’t beat me”.  To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water.  You kinda need to do this to survive.  It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter what the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person.  I’m over it.  I don’t want people to know how ill I am.  I wan them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity.  I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. So it takes a lot for me to register a ‘sick’ day.

I know that symptoms that were so strange and frightening at the start are like white noise now.  I’m permanently dizzy.  I’ve had nearly 4 years of dizzy.  In fact I don’t really remember being non-dizzy anymore.  If I didn’t feel nauseous, I thnk I may feel like I’ve lost a part of myself (not that I’m not willing to give it a go).

I know part of it is that I don’t look sick most of the time.  As we have all experienced people are happy to tell us we don’t look ill.  They might as well scream “LIAR” each time they say it.

I know part of it is that I used to work in a hospital.  I know what ‘real’ sick looks like.  For part of my job I worked in palliative care.  I know what those patients and their families went through and, my illness seems so petty in comparison.  Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness.  Who roll around is every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms.  What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship.   Certain posters tried to out sick each other.  Bizarre.  Certainly not a game I wish to win.

I know part of it is that many of those posters said “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming, those who say they can’t have a bad attitude and are lazy”.  Logically I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less.  So I fight through to try and do things that is a moment of clarity are far beyond me and fail miserably.  I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings.  When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves.  I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that doctor who told me it was all in my head.  I know he’s wrong, but I still have that nagging little voice saying “you don’t have an illness you are just a nutter”.  Stupid I know.

I can sit back, put my psychologist logical hat on, sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self lets not go there thats years of therapy) and pull apart my illogical reasoning.  But often we are driven by those little voices that tell us how we ‘should’ behave.  I hate those voices with a passion but I still hold them close, they are my frenemies and it is hard to part with them.

The other day I had a bit of a reality check.  I wrote a post about the good old ‘simple faint‘, on my personal blog.  Now for those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance.  But I was shocked by the comments.  People were truly horrified about the whole experience.  Now I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was a bit taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant but it’s part and parcel of living with dysautonomia.

Then it stuck me I’ve been living with this so long that I’ve lost sight of what I am going through.   My normal is so skewed from reality that I have lost the ability to really see my dysautonomia.  If one of my loved ones was going through what I described I would be horrified.  I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it.  It’s not about rising above it necessarily, but accepting it for what it is, to find it’s place in the big scheme of things.  I don’t need to minimise it to make it bearable,  that only increases the load I have to bear.  I’m going to bring it out of the shadows, not for anyone else, but for me.  Admitting it does not make me weak,  self-indulgent or  all the other negative names I can throw my way.  It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that.  But I also know that’s part of the process.  It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start:

“Hi my name is Michelle and I really am sick.  And that’s okay”.

🙂

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.

Lyla Posting……

There are times where it feels as though my world is crashing down on me and I’m being pulled in about 5 different directions. My heart is racing, chest pounding, dizzy, vision blurry, palms sweaty and I feel like screaming.

I’ve found out that putting my headphones on and jamming out to my ipod has helped me immensely during these difficult times. It gives me “ME” time!!! “ME” time is very important when you are dealing with the stressers of a dysautonomia life. Appointments, parents, friends, strangers,family and health care workers are constantly asking questions/have expectations or asking for you to be somewhere or do something.  When I’m just spending time with myself, my own thoughts, listening to my favorite music, I’ve figured out that my thoughts and feelings never go towards my disorder, stresssors or negative thougths.

So, I  guess I’m letting everyone know that when you’re going through a rough time, you might want to try to have some “ME” time even if it is 5 minutes. This is avoiding and avoiding doesn’t solve any problems, but it does fix a temporary issue and can help to clear your mind or put it in a more positive space.

Thanks

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.