Saturday, 17 January 2015

Gastroparesis the Truth

What is it really like to live with a  debilitating condition that may never go away?

In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself? 

So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by.

Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new hope, and a place of support and safety. In my case …saving my life. 

You now have tubes, holes, scars and new fears….. you're alive. Alive, but different. Jaded by the trauma of what has by now been several years. Years spent just trying to stay alive, being prodded, poked, cut into, cameras down the throat, up your bum and anywhere else they might wish to look! 

Wearing the battle scars you are now counting the years, the children are growing up but you barely noticed. The pain, the nausea and the side effects of medications take your memories and turn them into fleeting moments with little detail. You realise that their happiest memories will be of things they did with their grandparents, their father, their friends. 

You are alive, and you're grateful but you realise you are just existing. Just trying to get through the next day, the next hour, the next crisis. 

Despite everything that you have been through, you still don't feel better, trapped in a failing body and now a broken mind. There is no cure for gastroparesis, this is what life is now. 

However, people you meet know nothing about your struggle, your friends tell you that you look so much better. Your weight returns and you look just like anyone else with your clothes on. Hiding away the battles you went through. So you start to pretend that everything is ok. Pretend you can cope and say your alright when your not. Bite your lip and smile through the pain and pretend you need the loo when you really need to throw up. You do it to protect those around you. Because they have missed so much of you while you were fighting for life. Missing from every photo, really not there at all.

So you get lost in a hole, pretending to cope when you don't, crying when no-one is looking, not able to explain that although you might look better, you rarely feel it. All the time knowing that this will be what you have to do for the rest of your life. Hide any pain you might feel, laugh when you want to cry and claim to have hope when you no longer do.

Giving hope to others is really the only thing left, the only purpose you have. We all need it…. but we wish we didn't have to. We wish for a cure, a way to get our lives back, for someone to find the answer. It really is all that's left. 

Being alive is not enough, we want to live it, want to be in every photo, bearing a genuine smile, grabbing happiness wherever we can. We all need that, invisible illness is so much more than not being able to see what's wrong. 

Next time someone asks you, "Gastro what?" point them this way, maybe one day we won't have to go through all this and we can get on with living the lives we have had to fight so hard to keep.








3 comments:

  1. You hit the nail on the head, Minxie!! I shared so family and friends might realize that I do want to be there for the parties, the visits, etc. Simply might be a bad day that I can't hide from.
    Big hugs.

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  2. Very true and straight from the heart as always Minxy.

    XXXXXXXX

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  3. Hey, hi, and hello :)
    You don't know me... but I've commented - more like written you a book! :-/ - in another section of this blog, after seeing your written and photo diary of your procedure and the aftereffects.
    If it matters, well, all I said there still stands!!!
    But reading this, I saw so much of my life in there too, so thought I'd pipe up again.. ;-)
    I really value your entries; the honesty. It's a relief to find them.
    And you're funny as heck!
    No, no one should feel like they have to "be a hero" as I put it, be that stereotypical inspiration, be narrowed away by their illness into a stereotype of anything, prevented or discouraged from expressing the full range of who they are.
    It happens to me all the time and ticks me off, tbh!
    But here, online, you're definitely coming across as a whole, complex, and meaningful person.
    Just be you, and if that's not the you someone else wants on any given day, screw it! ;-)
    Those who truly love and care about us will love and understand us because of, and not in spite of that - and with the wide variations in opinions on how to live with EDS, I'm learning that sharing even a rare genetic mutation is, sure enough, no guarantee you will be understood. :-/
    Being ourselves is, ironically to me, the most genuinely heroic thing we can do coming through all this, and therefore is certainly more than enough! <3
    Keep kicking!
    "L in Canada".. again ;-) lol

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