Sunday, 19 April 2015

Life update

Hi there!

If you're a regular reader you will have noticed that I haven't blogged for a while, and I thought I owed you an explanation for this. Unfortunately life has got a bit more difficult. Due to my Ehlers-Danlos Syndrome I have a lot of problems with my digestive system, and these problems have been getting worse over the last few months. It got to the point where I wasn't keeping any food or fluids down, and I was feeling pretty awful if I'm honest.

We spoke to the Professor I see in London and he arranged for me to go up to London on Wednesday for some urgent tests. I had an oesophageal manometry, which is where they put a tube up your nose and down into your stomach that can measure pressure and other things in the oesophagus. They also attempted to do a gastric emptying study, but unfortunately because I kept being sick they couldn't do it, so I'm going to have it at a later date hopefully. 

The person carrying out these tests was my consultant, and when she saw how unwell I had got and how dehydrated I was, she contacted my local hospital to arrange for me to be admitted overnight for some IV fluids. The next day I went back up to London for am emergency appointment with the Professor. It turned out that the manometry showed that the sphincter at the top of my stomach, which is meant to close when you're not eating, keeps opening and so the contents of my stomach keeps coming back up my oesophagus, therefore making me feel incredibly sick. He wanted to try me on a medication called Baclofen, which is used in patients with M.S, but because I'm on a Beta Blocker for my POTS and my blood pressure is also quite low, we can't use that medication. So he's put me on a heavy duty anti-sickness called Ondansetron, which is apparently used for cancer patients when they are going through chemotherapy, so it's a pretty strong drug. I've also got to do some physio and breathing exercises for my stomach to try and help relax the sphincter, which in turn will encourage it to close and hopefully help with the sickness. I'm due to go back and see him in a month to talk about how I'm getting on and to hopefully start investigating why I get pain, bloating, early fullness and nausea/sickness when I try and eat.

The Ondansetron seems to be helping a bit - I'm managing to keep down a small amount of food without being sick, although I still do feel very sick and the pain etc. has come straight back. For now though, we're just focusing on getting what nutrition we can inside me and keeping me as stable as possible until I see the Professor in May. I've been pretty emotional if I'm honest - I've had these symptoms for over 11 years and I do just get incredibly tired of going through the same thing every day. Usually if something makes you feel unwell or causes you pain you would avoid it, but I can't avoid food and I find it very mentally exhausting having to try and eat every single day. But I'm trying to stay as positive as I can because otherwise I think I would just break down. I'm aiming to get myself back to college tomorrow morning because I've only got a month left and I think if I take time out now it will really affect my mental health. So for the next month I've jus got to push myself as hard as I can to finish my assignments and sit my exams, whilst attempting to get some nutrition in me and not dipping too much. Easier said than done!

So anyway, I thought I would just update you all with what's been going on. I've really missed blogging but it's going to be a while before I can get back to doing the amount of posts that I normally do, especially if I'm using up the little energy I have on college. I will still try and do some posts where I can, and I've set up my laptop so I don't have to sit up at my desk to write if I'm not feeling up to it. All I ask of you is that you bare with me over the next few months, while I try and focus a bit more on my health. Thank you xx

post signature


  1. What an ordeal! No wonder you haven't felt like blogging. I hope the appointment next month brings more answers. xx

  2. Oh no :( Hope you are feeling better soon x

  3. It was lovely to see you at the weekend x Sorry if I seemed preoccupied x If you ever want a chat or to go for a coffee or fresh air then just let me know x Dawn x

    1. Thank you lovely it was great to see you too! I've contacted my blogger contact at Festival Place to see if she can help with a venue for a little blogger meet-up, so keeping my fingers crossed I can get that organised soon so we can catch up again properly! xx