Thinking about living....

When I was 5 days old I almost died. No really. My mum went to check on me and I was lifeless and not breathing in my cot. It turns out she caught me in the early stages of SIDS (sudden infant death syndrome) For the next 6 months she had to wake me every 3 hours to prevent me falling into a deep sleep and to essentially I guess, check I was still alive.

When I was a teenager I plummeted into a very deep dark depression and developed an eating disorder to boot. Even now when I see the photos of myself standing at 5'11 and weighing just over 7 and a half stone I am still shocked. I really did never realise how physically sick I got.

I can't and won't lie. On more then one occasion the illness nearly killed me. I nearly gave up hope that I would ever have any future and contemplated taking my own life several times. Wow I've never told anyone that before. Many many years after my recovery I once found an old suicide letter I had written. I wrote two letters that night. One was a suicide note and the other was a letter telling my family I had run away. In the end. I ran away. That was the beginning of my healing though. I guess once you reach crisis point the only way really is up.

Then when I was diagnosed with Hypermobility Syndrome (Elhers Danlos) I had to wait 5 awful months before learning that I did not have the vascular form which can be life threatening. I didn't tell ANYONE that was a possibility. I didn't even tell Tony until the night before we were going to the appointment just what news we may hear the next day. I cried the two and a half hour ride to my grandparents house (we were getting on a train from their town) and had to give him an explanation for my turmoil!

I don't know why I have been challenged with so many 'near death' experiences. I can't say it makes me contemplate my own mortality more then anyone else does. I never even think about it day to day to be honest but something someone said to me today really made me wonder.

Over the weekend the amazing community I live in all rallied together to put on an amazing musical fundraiser to help Tony and I manage with the many many extra costs incurred because of my HMS, Such as having to travel to hospital appointments over 3 hours away and all the equipment I need to make life easier. We have been blown away with the support the community have shown. Local shops all grouped together to help cover the costs of the over heads. The local theatre gave up the premises for the event. Raffle prizes came flowing in. All in they raised over £1700 on that night. An amount of money that is quite frankly breathe taking to us.

I was talking to a shop owner today and he said "Well, you make it easy to want to support you. You live. You're not sat at home feeling sorry for yourself, you've got this obvious drive to live your life. It's easy to help someone that wants to carry on as much as you do".

It's not often that we are able to agree with someone when they compliment us but in this case I do. I said to him "I've got a life to live, I've got to carry on! Can't be sitting at home doing nothing!" I do have a very deep desire to live. And I don't mean heart beating and breathing I mean to LIVE.

To feel the rain on my skin, the sun on my face, a laugh in my mouth, tears on my face. I want for Amelia-Rose to look back on her early years and think 'Jeez, my mum was ALWAYS there for me. Playing with me, baking with me, teaching me crafts, tickling me, goofing around with me, going on walks with me.' I want Tony and I to look back on these years and think 'We never let a day go by when we didn't say and FEEL 'I love you''.

This life, my life, is such a precious gift. Your life is a precious gift. It's all too often people let life whizz by in a blur of 'I must do this'. When was the last time you stopped to think "Was I alive today or did I just get on?" No one else can live our life for us. We and only we are responsible for that.

I believe every living thing has a right to live a good life. It's one of the reasons I don't use ANY product tested on animals and I strive to be a vegan (unfortunately my meal replacement shakes from the nutritionist prevent me from doing this right now) I don't believe my life is anymore imperative then that of an animal and when you suffer as much as I do you would NEVER have ANY hand in causing suffering to another life.

Although I've had probably more then my fair share of encounters with almost not being here anymore the thing that I am often overwhelmed with is a deep burning desire to live. It isn't about life and death it's about LIVING. I'm not talking about not wanting to die I'm talking about wanting to make every second of every day count.

It should always be the first thing on our list but so often it is the last.