Gastroparesis and Ehlers-Danlos Syndrome

Time for an update I think! I worry that my blog sometimes sounds really repetitive, not much changes around here I'm afraid so more of the usual coming your way!  The problem with not updating regularly is, that I can't always remember everything thats been happening. My memory is shocking and after 3 years of this and all my appointments etc kind of blur into one these days.  If I'm honest, I feel low. I can't put it down to one thing thats making me feel like this, I just feel completely overwhelmed by everything. Not just health issues but life in general can be a bit of a challenge sometimes. Being ill just complicates things further. There are times in your life when you need to be on top form so you can be strong for others, and that's just how it should be, yet I feel like I'm failing my family because I just can't deal with any more!  I won't bore you with the details of life's craptastic twists and turns but someone put a go...

I don't claim to be a writer by any stretch of the imagination,  but I do have writers block! Maybe it's not a lack of something to say but rather...I'm sick of the subject. I feel like I've come to a bit of a road block and I'm swinging from not wanting to talk about it anymore to wishing I could. I'm not saying I don't have support, I do! I have a great family and a truly amazing best friend, not to mention all the friends I've made through here! However, sometimes those are the people I least want to speak to. Not because I can't...I simply don't want to. It's kind of hard to explain hence "writers block". The only way I can explain it that makes any sense is to compare it to the kitchen bin...don't laugh, I've been thinking about how I can put this into words for ages. Yup...the kitchen bin was the best by far ha ha. Anyhow, if your house is anything like mine then you will know what I'm talking about! The wa...

I haven't been posting regularly for a while and keep apologising for the lack of activity here.... Im not apologising for anything anymore. Life is a roller coaster and that's that lol. One of the top ten questions I get from people about my condition, is, "How do you cope with that?" until recently I have found this question near on impossible to answer. What do you mean? I'm not coping, I'm not dealing with it and I just want a way out. I never understood the question... I just wake up everyday and put one foot in front of the other...sometimes I walk and sometimes I fall. That's just the way it is. I have no choice in the matter really. So COPING never really entered my head. However, the last couple of months have been a turning point for me. My last clinic appointment left me in tears and all kinds of emotional torment. I was told that I would probably be on TPN for the rest of my life... wowzer, I had never dared to think like that before. No...

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.