Gastroparesis and Ehlers-Danlos Syndrome

Probably the worst question in the world…or is it? It's probing and intrusive and commonly people don't really want to know unless the answer is positive. Those who choose to answer in a negative context will often be left wishing they had just said, "I'm ok thanks". Gradually over time you find yourself saying your fine when quite clearly you're not. Why is that so? What is it about discussing how we feel, that makes everyone so uncomfortable? I'm not apportioning blame on anyone, we all do it, even if we don't intend to. Is it a "british thing" or is it the same in every culture? I say this because my brother used to have a friend who's parents always asked him what his bowel habits were like as it was their culture to do so. Of course he found this pretty weird at first but clearly it is similar to asking "how do you feel" and is similarly intrusive to people unfamiliar with the culture. What is it that makes us not wa...

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...