Gastroparesis and Ehlers-Danlos Syndrome

I have been neglecting my blog recently and I apologise if I caused anyone to worry. I have hit a brick wall at the moment and writing about gastroparesis and how I feel about it etc etc has been an impossible task. I'm finding it hard to concentrate on anything lately. I can't seem to focus or even gather my thoughts. Then I spend forever thinking about what I need to be doing...and then not doing that either! I feel kind of lost but I don't know why. I thought a break from all of it would help but it seems that once I stopped writing... it all just got harder. I think I have been bottling things up a little and now if I pop the cork its going to end in a meltdown.... if that's not whats happening already!  I often put on a brave face and tell people I'm ok when I'm not, but when I try telling myself the same thing it leads to this build up of emotions that I don't really know how to handle. I am finding that the longer this goes on the more alone

I'll bet most of the people reading this post will know where I am coming from with this one! How many times since diagnosis has someone asked you, "Well what DO you eat?" For me the answer is simple, "nothing" is my reply. This is quickly followed by, "Well, you MUST eat something!" I have lost count of the times this has been said to me. I came to the conclusion that people react this way because they simply can't imagine what that might be like, so I thought I would try and explain. No, We have not lost the ability to chew, swallow and ingest food. There are no obvious physical changes such a lumps bumps or obstructions. You can't see gastroparesis by simply taking a picture of our insides. But that doesn't mean it isn't there! We have to learn to override one of the the strongest natural urges of the human body. You don't just eat with your mouth, you smell it you see it... you want it! Living with gastroparesis mea

Coming to terms with chronic illness is the hardest battle we face. Some days you feel like you could conquer the world and the following day you just want it to swallow you up! I go through cycles of emotions that I didn't even know existed before, from optimism and hope to total despair. Part of the "acceptance" process is acknowledging these feelings and understanding where they come from. I have spent so many hours laying in bed wishing that things were different. In the beginning... it consumed me... until I realised that I was allowing this illness to beat me both mentally and physically. Then, I began to look at it differently. I can't change what has happened to my body, I can't force it to work as it should... but I CAN choose the way I deal with it. Learning to live with chronic illness is like shovelling snow when it's snowing... but it never stops. Our emotions are just as relentless so you need to learn to pace yourself and allow time to ma

Oh my goodness! Where do I start to explain my crazy roller coaster ride? Quite honestly, my head is still not quite in this world but I'm getting there slowly but surely. It's been three weeks since I came in for my "minor" surgery and I have only just started to turn the corner. My physician came to see me shortly after my last post and we finally discovered what has been making me so ill. She didn't want to dismiss the possibility that there was something sinister going on  since my blood tests indicated that something was going on with my liver. So, I headed off to ultrasound to get everything checked over again. Usually this is a safe and painless test, however, when you have just had surgery....it's is definitely NOT painless or easy at all! Even laying flat on the bed was torture, never mind having someone rubbing and pressing on my surgical wounds! She must have checked just about every organ while I was there, from my liver and kidneys to my sple

I'm not up to writing a long post right now but I wanted to update everyone because my inbox is full lol. I had surgery last Wednesday (17th) to have my gallbladder &pacemaker removed and to get a new jejunostomy tube for my medication. I was supposed to be here for 2 days but as you can tell, I'm still here 11 days later with no sign of being anywhere near ready to go home. The surgery itself went ok and a subsequent CT scan confirmed that structurally everything is ok. However, since the surgery I have been vomiting. Not just a little, I'm talking anything up to 3 litres in 24 hrs. They have no idea why this has happened or how to make it stop. I'm on 3 different types of anti-sickness meds yet it just won't stop. Sleep is becoming a big issue as I'm up most of the night with it. Of course lack of sleep with the added nausea and vomiting have put me on a real downer. they are finding it hard to get enough fluid in to maintain hydration because my TP

Hi guys, Just a quick post to update you on the progress of the Gastroparesis charity I started. Many of my Facebook and twitter followers get regular updates on what we have been doing but for those new to the page here's where to find us and how you can help. The charity is called GIFT standing for : Gastroparesis &Intestinal Failure Trust You can find us at:  www.giftukblog.blogspot.com  please take a look at our fundraising page where you can earn crucial donations for GIFT without it costing you a penny extra by registering with Easyfundraising (direct link available). The support group currently runs through Facebook and can be found at:  www.facebook.com/groups/giftuk And finally our awareness campaign can be found at:  www.facebook.com/giftuk We have had some excellent feedback from our existing group members and hope to expand the support network over the coming year. We are currently building a database of members and invite anyone in the UK to come and j

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