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.

Advertisements