Sunday, 9 November 2014

Sunday Spotlight - 9th November 2014

In my life this week…

Eating Disorder assessment

I’ve been really struggling with my eating disorder recently. I was discharged by the eating disorder service back in January, when they told me my case was too complex for them to help any further. It was a massive blow and I still feel very angry that they can do that to someone who is still struggling. This week I went back to see them, to be reassessed for further help. Unfortunately it wasn’t a particularly positive appointment. I explained where I’m at, and the fact that I am trying so damn hard to maintain my weight. But, because I’m not underweight, apparently I’m not a priority any more and they said they’ve helped me more than enough. They said again about how complex I am and that they don’t know what else to do for me. I’ve got to go back next month to hear their final decision, but to be honest I feel like they’ve already given up on me. It seems so wrong that you have to be seriously physically unwell to get any help, when they’re meant to be a mental health service. Surely it’s harder to help someone when they get that ill? Wouldn’t it make more sense to help someone before they decline so much? You wouldn’t tell someone with cancer that they have to become more unwell before they can get treatment, so why is it OK to say it to someone with a mental health problem?

The Royal London appointment

This week has been one of the most stressful weeks I’ve had in quite a while. As well as my eating disorder assessment, and an exam at college, on Thursday my Dad took me up to The Royal London Hospital to see a gastroenterology professor who specialises in Ehlers-Danlos Syndrome. I spent over two hours in my meeting with them, and thankfully it was a much more helpful appointment than the previous day. I initially saw a registrar, who was absolutely lovely and really put me at ease. The professor then joined us, and my diagnosis of Ehlers-Danlos Type 3 was confirmed. They also told me that one of the complications of this illness is that it has affected my digestive system, meaning it’s not working as well as it should be. I’ve got an overgrowth of bacteria in my small bowel, so have been put on strong antibiotics to try and kill as much of that as possible. I then need to take probiotics until I next go back and see them (within the next six months) when we will then discuss further, more invasive, tests and also trying a medication to try and speed up my digestive system a bit. After this I spoke to two specialist nurses, who were so lovely and really helped me get my head around things a bit. I’ve now got to spend some time coming to terms with this diagnosis and the possibility that my symptoms are likely to deteriorate as I get older. But it’s so good to finally have a concrete diagnosis and have a tram of people wanting to help me.

Girly day

After such a stressful week I was in much need of some girly time, and thankfully I had a girly day planned on Saturday with my friend, Lilli. We decided we’d start off with a bit of shopping, so Lilli kindly pushed me in my wheelchair around our local shopping centre, and we started to get into the Christmas spirit seeing all the lovely window displays. I treated myself to a few things, which always makes me feel better and we stopped off for a nice drink, which was lovely. After driving home in the pouring rain, we chilled out in front of a movie with a warm cup of tea and a cookie, before driving down to our local pub to watch some fireworks. Thankfully the rain eased off for the display, and we stood there shivering while we enjoyed watching all the colours in the sky. To finish off the day, we enjoyed hot dogs and toasted marshmallows – definitely a much needed chill out day.

Image from Weheartit

What has grabbed your attention this week? I love hearing about people’s new discoveries and you may end up sharing something that makes it onto my list next week!


  1. Gosh, that first bit about not getting any help is absolutely disgusting! No one should be refused like that, and you're right, prevention is so much better than being that underweight. I keep a recovery eating disorder/life blog - maybe some of my experiences could help you? If I can help you at all, let me know!
    Sam x

    1. Thank you Sam I will go and check out your blog now - I appreciate your support xx

  2. Did you see Professor Aziz? I have EDS too (and it has caused me lots of complications including gastroparesis). I remember the relief I felt when I finally found out what was wrong after years of being extremely ill and constantly deteriorating. There's lots of great support groups and places with helpful information (I'm sure you've found them for yourself but if you ever need some links just shout!). I hope you're doing as well as possible!
    Naomi x

    1. Hi Naomi - yep I saw Professor Aziz and like you said it was such a relief to finally have someone who understands the complications of EDS and could come up with some sort of plan! I'm glad you found help with him as well. If you could share your links that would be great thank you! I've just joined the EDS UK charity support group thingy, but am always looking for other avenues of support :) xx