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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. 🙂

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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.

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.

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.

I’m feeling positive and well rested today, despite having trouble getting off to sleep at first, I think once I did, I must have slept deeply and well.

I was just now thinking about yesterday, and how on some level that crying I did felt healing. It was a release. I think it’s something people with chronic illness all need to do from time to time, whether it comes on seemingly out of nowhere or whether it’s triggered by a hurtful remark, situation or event.

When I first became ill, I suffered for a while with a reactive depression. I was studying at university, all my good friends had moved away, being ill and having little energy meant that I made very few new ones and I felt very lonely and isolated.

I got into ‘self help’ books (as I hate feeling helpless and wanted to do something about the emotional pain I was feeling) and one of the books I read was incredibly helpful.

This book is all wonderful, but there is a particular chapter which struck me back when I first read it, and has stayed with me since. Chapter 9, “Find Beauty in the Land of Tears.”

Susan is a beautiful writer and what she’s saying here is that in order to be human, you have to face suffering- whether that’s your own or seeing someone else’s- because it’s all part of life and what it means to be human.  Susan says that when she learnt to embrace her sadness and not block it out or damp it down, when she learned that it was okay to cry, it led her to a more joyful experience of being human.

“Now, when deep sadness comes over me, I can let it be there like a warm blanket. I don’t have to push it away. It feels so good to just let the tears flow freely. When I let the tears wash over me I feel cleansed and healed. And when the river of tears is empty, I am freer to enjoy the delights the world has to offer, without a layer of sadness dampening my joy.

Paradoxically, my letting in the pain of being human has allowed me to experience the joy of being human. The exquisite moments expand and expand- the moments I am infued with energy and aliveness, the moments I feel connected as part of the human family, the moments I let go of the struggle and feel myself dancing with life. All the pain in the world cannot deny these exquisite moments.”

I’m grateful to Susan for writing this book and teaching me these things. Her books really did help me to change and grow for the better at a time when I felt I was like a flower frozen in the toughest winter, never thinking I’d feel the warm spring sun again.

So if you need to go to the land of tears then go. Be there. Allow yourself to be human. Don’t think it makes you weak, it doesn’t. There’s nothing weak about embracing all of what life has to offer and having your heart open to it all. That includes the sadness.  Keep your heart open and let the sun’s rays light up your life. Keep your heart open, embrace it all, and life’s dark clouds and storms will always pass.

Shan posting;

So i was asked by the lovely Laura to post my Invisible Illness video on this awesome new blog, so here it is!

I also just wanted to try to explain the point i was trying to get across with this video. I made it on one of those days where you are just so sick and tired of feeling sick and tired; nothing could possibly go smoothly on this day.. But for once i decided to put all the (negative) energy and thoughts i was feeling on paper, instead of having one of those ever-so-attractive, “Why me?” pouty, whiney, complainy kind of days (although those can be fun sometimes too).

I didn’t plan the video out at all, i’m not sure i even had a video in mind when doing this, but i just grabbed a post it pad and started writing out all the things i was feeling, and have felt, during the past 6 years of living with Dysautonomia. Lonely, Depressed, Isolated, Ignored, Invisible. i laughed a bit to myself as I wrote down this last one, as it seemed kind of funny to me at the time, that my illness itself was invisible, and here i was feeling that way too.

I stared at all the post-it’s with their negative thoughts and phrases and felt just a little bit pleased by this production. God knows why, as they clearly weren’t at all empowering or motivating words, but it was almost therapeutic, getting them all out there, out of my head. I also felt a strange sense of accomplishment; like i had made it through all these negatives, enough to fill up my whole table, and i was still here, still fighting. On top of all this, it was like i was making all these invisible feelings, physical and mental, visible. It made me feel better about them, seeing them all staring back at me like that.

I decided to make a video out of them, in hopes to be able to let any others with an invisible illness see that they are not alone in their frustrations and hardships, and to also empower them to want to spread awareness about dysautonomia and invisible illness in general.

“Every calamity is to be overcome by endurance.”

Love,

Shannon