Gastroparesis and Ehlers-Danlos Syndrome

G.I.F.T: Do you write poems? : Hi everyone! After receiving great feedback on facebook about poems, I thought it would be a great idea to get everyone to send in their ...

To all my friends and family, I want to thank you for being there for me. For keeping my spirits up in the hardest of times and for believing in me from the start.  Our relationships have been tested to the very extremes yet we still stand side by side in battle, waiting for times to change. I promise you faithfully that one day, we will win this fight..... how can I be so sure? Because with friends and family to help you through, you don't need a miracle, you already have one! I thank you all from the bottom of my heart for sticking it out with me and never loosing hope x Never Ever Give Up! NEGU x Dear Gastroparesis, Screw You! Nat x

I have not been writing much, in fact I haven't been doing much of anything lately... you know when I start writing poems...its not going well lol. I have been having a mini war with myself over medication and just generally sulking about the whole situation! At my last consultation we decided to remove my nj tube after starting on TPN in the hope that I wouldn't need them now that I'm not using my digestive system for feeding. It didn't take long to realise that I really needed some of those meds but by then it was too late and the tube was gone. So I have spent weeks trying to cope, simply because I didn't want the dreaded tube back! Really all I needed to do was make a phone call or send an email but I wasn't giving in and wanted to make it work. That was pretty dumb and I should have known better but I never learn. I do everything the hard way so why would this be any different lol. So, of course by taking that approach, I just made everything worse for...

We have recently launched our new blog! If you haven't seen it yet take a look at  www.giftukblog.blogspot.com  and see what we have been up to! We are just starting out so don't have a great deal of funding but soon hope to get our website off the ground to provide a more interactive platform. In the mean time, I hope you like it....show your support and subscribe, tweet, 'like' and share our page! You can also visit our support group at  www.facebook.com/groups/GIFTuk  for patient led advice and support.

You sit and you wait the clock is ticking What's the deal…the doctor is late! You think to yourself its not so bad in fact he really thinks I'm mad! You sit and you wait now feeling too ill when he makes the suggestion lets try one more pill. You nod your head  and go with the flow after all he's the one in the know. You sit and you wait getting thinner and thinner come on doc I just want some dinner. Your life soon revolves  around constant drip rates and you just can't remember the last time you ate. Time is a healer but you're not so sure after all they say there is no cure. So you learn to live with the hand you are dealt and hide from the world the way that blow felt.

I see you there as you stand and stare, my body is broken, i'll lay it out bare. Look into my eyes, they have seen more than many. Hopes and dreams I cant have any. I see you there as you stand and stare, my spirit is broken, i'll lay it out bare. Look into my eyes, I'm deep down inside, here in my war zone, theres no place to hide. I see you there as you stand and stare, Don't pity me, dont even dare! Look behind my eyes Can't you see I'm still there. I fight the good fight all day and all night to awaken the spirit and live for the right the right to be seen from the shadows of lights. Look beyond the battle look beyond the war Life is worth living of that I am sure.

I realise I was a bit vague in my last post but this entry deserves a little time to write without distraction. I commenced TPN (intraveous feeding) on the 12th June and since then I have been testing my feet in this new world. In just under 3 months, I have gained back 11kg and for the first time since my journey started over two and a half years ago,  I'm a stable healthy weight. Initially, when TPN was mentioned as the next step for me... I panicked! Like anyone would I guess. I saw it as a sign of things getting worse and found it hard to stay positive during that time. Then, things got so bad I stopped looking at it as "as sign of getting worse"... there was no worse anymore... I felt so ill I didn't care what any of it meant as long as it kept me alive. I realised that this was the only thing that would stop me from starving! (Yes I know thats the purpose of it lol. It just took me a while to realise that!) Accepting it was only half the battle though. Fi...