Gastroparesis and Ehlers-Danlos Syndrome

RANT ALERT! Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes! Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away). So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments! My mum and I attended the appointment together like we always do...

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new...

It's been so long since I wrote here yet it amazes me how many people still read my ramblings. When I first started writing I did it to find others like me and help along the way wherever I could. I really can't believe how much it has changed my life. I was never the brightest kid in school, nor the funniest, I hid away in groups and quite honestly people rarely remembered me at all. Probably because I never wanted to be noticed, didn't want to stand out too much. My teachers always said I had potential but I rarely reached it! Not because I was naughty… simply because I didn't have the courage to make myself heard. The last few years of living with a chronic illness has been a huge learning curve and I've had to do a lot of soul searching.  During that time Ive realised that all my life I felt like an "underachiever" for lack of a better word. Always feeling that I had let others down and in turn let myself down the most. Maybe it stems from my abse...

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 ...