Gastroparesis and Ehlers-Danlos Syndrome

I know I haven't posted in a while but I have been so busy trying to be wonder woman I really haven't had the energy left for it. That sounds really exciting but in all honesty wearing a pair of spandex pants is probably the closest I'm ever going to get!… Not that I actually own any spandex either, just to be clear ; ) So what have I been doing? Well, following on from part 1,2,3,4,……blaughgghghgugh I decided not to write part 5! I have a half finished version of it but I don't intend to post it. So much has happened since then that I just don't want to look back. I could list the catastrophe's in bullet points for you but that's not really me and I won't let any of this define who I am as a person! It may not define who I am but it is always going to be a big part of my life, and for that reason I've had to re-build life around it rather than brush it under the carpet. I don't always get it right and there are so many days when I still w...

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...