Wednesday, 2 September 2015

I'm back! A little update


Long time no speak! I can’t believe the last time I posted was April – I seriously don’t know where the time has gone! I’ve missed my blog and the blogging community so much, but unfortunately I had to put my health first for a while to stop things spiralling down too much. When I last wrote I had just been put on some strong anti-sickness medication and had a month left at college. It feels like so much has happened since then and I wanted to give you a quick update.

Health stuff

I’ve continued to take the Ondansetron (anti-sickness) and although I’m still struggling with severe nausea, my sickness has improved thankfully. I did have to come off it for a little while when I had a gastric emptying test and definitely noticed a difference, so I’m back on it now. The gastric emptying showed that I have something called Gastroparesis, which basically means my stomach emptying is severely delayed so food sits in there for much too long and causes bloating, pain and sickness. It’s good to finally have some sort of answer, even if it is a very difficult condition to manage. I’m waiting to start a drug called Prucalopride, which is meant to speed up stomach emptying, but I need to see the pain consultant first to change the Tramadol I take to a painkiller that doesn’t affect bowel motility.

Somehow, with all this going on, I managed to finish my college course, pass my exams and come out with a distinction profile, which I’m pretty pleased about, if a little bit shocked! College finished at the beginning of June, so I’ve had a few months off to really try and focus on my health. I had been planning to start a degree in Occupational Therapy in September, but with my health as it is at the moment, I decided I wouldn’t be well enough to manage it. So I now have a place at a local University to study for a Journalism degree, which will mean I can use my love of writing and also experience other forms of journalism, which will hopefully be good fun.

At the end of May, I had to have a permanent urethral catheter inserted, as self-catheterisation wasn’t working and I went into retention. I was getting frequent infections anyway, but now I pretty much have a constant infection, so we’re looking to put me on a maintenance dose of antibiotics. My Urologist arranged for me to go into hospital at the beginning of August for a cystoscopy and urethral dilation under general anaesthetic, to see if he could find out why I couldn’t self-catheterise any more and what was causing me to have all these infections. My Mum dropped me off on the ward on the morning of my procedure, I changed into my gown and got out a magazine to read. The next thing I knew I was lying flat on the bed with a crowd of doctors and nurses around me. They told me I’d had a tonic clonic seizure, and the operation had to be cancelled.

I felt awful after the seizure and it’s taken me a long time to recover. I saw my Neurologist last week and I’m now waiting to have an EEG to see if we can find out what’s caused me to have a seizure. I’ve been told I can’t drive for at least six months, which has had a big affect on my mental health as it’s the only independence I really had, but obviously I understand why I can’t drive. There’s been lots of other little bits and bobs going on over the last few months, but I think that sums up the main changes. I’ve actually started a second blog, where I will just talk about personal things like my health, appointments, operations, treatments and things like that, so if you’re interested in that kind of thing, you can find that blog over at Unicorns and Floral Crowns - feel free to follow me on Bloglovin’ too!

Summer holidays

Although my health problems have taken up a lot of the last few months, I have managed to do a few nice things too, which I thought I would share with you. Back in May, my Mum and I headed up to London for her birthday present: Afternoon Tea. But this wasn’t just any old afternoon tea. This was afternoon tea on a London Bus! We had a lovely few hours seeing the sights of London whilst enjoying finger sandwiches, scones and cakes. I was thinking of writing a separate post all about it, if it’s something you might be interested in?




In July I went to Wembley Stadium with one of my closest friends to see Ed Sheeran. We had wheelchair seats, which were really close to the stage. The sun was shining and it was just perfect – singing along to his magical lyrics with thousands of tiny phone lights twinkling around the stadium. Definitely one of the best music concerts I’ve been to.



I was determined that I would get to the beach this summer because there’s nothing better than sand, sea and blue skies on your summer holiday. I managed to visit two beaches this summer. The first was when I went down to Southsea with a couple of my college friends. Unfortunately, it was cold and rainy, but we still had a brilliant time visiting The Tenth Hole, where they serve an amazing array of cakes, looking around the rose gardens and my two friends went paddling in the sea while I sat snuggled up in a coat in my wheelchair! My next visit to the beach was a bit warmer and sunnier. My friend and I headed down to St Ives in Cornwall for a few days. I’d never been before and it certainly lived up to my expectations. Unfortunately, we ended up spending half of our only full day at the local hospital, as my catheter fell out, but we still had a lovely few days.

Trip to Southsea

Trip to St Ives

This summer I’ve also been doing quite a lot of exciting media work. Early on in the summer I was visited by a BBC crew who filmed me talking about the problems with mental health crisis care and why improvements desperately need to be made. Then, a month or so later, a car came to collect me to take me up to London to be on The Victoria Derbyshire Show – my first time on live television! Myself, a lady called Joss, a GP and someone from Beat talked to Victoria about the fact people are being denied treatment for eating disorders because their BMI is too high. This is something that has personally happened to me, so I’m very passionate about raising awareness of this problem and trying to help people understand that you can have a severe eating disorder at any weight. It was a pretty amazing, if slightly surreal, day, and although it completely knocked me for six, I’m so glad I did it.

Talking about mental health crisis care

Outside the BBC for Victoria Derbyshire

So, I think that’s about it! This has turned into a ridiculously long post, but I thought I needed to round up the last few months first, rather than just jumping in with a random post about make-up or something! I’m hoping to get back to posting more regularly now, although at the moment I haven’t worked out a schedule just yet. I’m going to change some of the regular posts I used to do – my monthly round-up is possibly going to go, or at least change, and the Happiness Project I was posting about will probably be started again next year. I’d still like to do a Sunday Spotlight of some descriptions, but perhaps make some changes to that as well. With regards to my vlogging, it’s something I definitely want to get back into soon, but for now I want to focus on just getting my blog up and running first. If there’s anything you would like to see on my blog, I’d love to hear your ideas and suggestions, so please feel free to leave me a comment or drop me an e-mail!

How has your summer been? Have you been on holiday or done anything exciting? I’d love to hear all your news!

post signature

4 comments:

  1. I am sorry to hear about your gastroparesis it is a harrowing illness and is not supported or given enough awareness by the government. On the plus side well done for talking about your illness on live television that is fantastic and a sign that you will do more great things in the future.
    http://www.fadedspring.co.uk

    ReplyDelete
    Replies
    1. Thank you for your support and kind words :) xx

      Delete
  2. Glad you're feeling well enough to update! Sounds like you've managed to enjoy parts of your summer at least. Hopefully they can figure out what caused the seizure, I feel like that would be pretty scary.

    ReplyDelete
    Replies
    1. Thank you Sara - hopefully I'll get some answers! xx

      Delete