Wow. What an amazing and wonderful experience I have had, stumbling across this old blog of mine and finding out that so many people had commented and messaged me to say thank you for providing this website.
I do hope that the website continues to be found by people who are in the position I myself was when first being diagnosed with dysautonomia. Sadly, weebly, the host that I use, has recently made it so that free websites are not included in the search engine listings; I'm not sure how that will affect this site, and whether or not it will still be found by people searching for information on dysautonomia.
It was truly heartening to read so many positive emails and comments in response to this site! Infuriatingly, I had set up the 'contact me' box with an old email address, so I never received the emails in the first place, what a numpty! Thank goodness I found this site again, remembered my log in for it, and was able to go to the form and read the messages. To those that reached out to me- I am so truly, very sorry that I did such a silly thing and haven't even seen your messages until today! I am going to do my very best in the coming days to reply to everyone who messaged me, given that many reached out years ago, this may be in vain but I will try!
For me personally, weebly has become disintuitive to use- so if you still want to connect with my writings, I have today started a new blog over at wordpress:
I have made sure to start that with a current and very much in use email address, so that I never make this same mistake again!
Blessings to all who have stopped by,
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.
Don’t you ever forget it!
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.
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.
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.
My name is Laura and I've always loved writing, so I thought- why not use my hobby as a way to inspire others. As a result, this blog was born.