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Showing posts from January, 2017

Facing a Fear

It's blog time again! But this one's only going to be a short-ish one as I haven't done any planning. I've only just decided to do it as I thought it would be nice to talk about my day, so forgive me if it doesn't seem as well thought out as my blogs normally do. I've been quiet lately as Marfan Syndrome Awareness month is coming up, so I've been trying to focus on putting something together for that. For now though, I'll tell you about today.  This morning I went to church with my friend, she invited me along because she knows we share similar interests. Even though I have known her for a very long time, I was still nervous about going with her because I knew there'd be a lot of people there, (People are my biggest fear) & I always feel out of place in the middle of a crowd. But my friend made me feel less anxious by sitting with me at the back of the room out of the way of most people. I was worried about doing that in case I was seen as bein

Just a Short Post To Keep Everyone Updated

I t's blog time again guys! Al though I don't have much to say at the moment as my mind has been more focused on planning next month's blog because February is Marfan Syndrome Awareness Month. So I've been busy trying to draft something up for that, but I'm having to think hard as I already did a blog based on my personal Marfan story back in November, and I don't want to basi cally just repeat everything I said then. But at the same time..I also don't want to ignore the opportunity to raise awareness of something tha t I'm hugely affected by. So, I'm not making any promises, but I'm hoping to put something good (or at least publishable) togethe r for February lol.  That's not the only reason I've been qui et lately though . The fact that I've been in low spirits is also partly to blame as it has been impacting on my ability to concentrate on writing. But hopefully , by doing this blog & planning February's motivatio

From Scoliosis To Marfan Syndrome

I was diagnosed with Scoliosis when I was 13 years old. I clearly remember the day I had to go for an X-ray because I had been complaining of back pain, I waited a while then the consultant came to see me. I was with my Mum as he explained what was wrong, he told me I had an S shaped curve of the spine, called Scoliosis. He didn't tell me much more than that, apart from saying he'd refer me on to an orthopaedic surgeon. I went home that day not knowing what to think or feel, I was just a 13yr old girl who didn't understand any of this.  The day came when I had to see the Spinal Doctor & I went along with my Mum & Dad and had some more X-rays, then I saw the consultant who told us my curve had progressed since I saw the first doctor a couple of months earlier. He told me I actually had a double curve which was aggressive & would need operating on, he said it was strange to be so severe at my age, usually Scoliosis can be treated with a brace &a

A Short Explanation... x

If you read my last blog you will know that I've now decided to remove my Facebook blog page. A few people have asked why I'm doing this so I thought I would do another blog to explain my reasons more clearly. I don't think people understand my decision to delete it so soon after I set it up. But hopefully I will be able to gi ve a better explanation here.  I didn't consider anything other than making things simpler to begin with. But as time went on I started looking at it like this.. I could keep sharing my posts on the page, but I'd have to edit what I was writing about because I didn't want what ever it was to be read by everyone on Facebook, or I could delete the page & go back to blogging in the honest & open way that I did before.  By sharing my blogs on the page I felt like I had to think more carefully before writing them . I had to question weather I was happy for people to be able to visit a facebook page & find out so much about me,

Read About My Decision To Delete My Facebook Blog Page... x

This time I want to talk about my Facebook Blog Page & why I've decided to delete it. I made the page a few weeks before Christmas & have been using it to share my blog posts on. It wasn't something I always intended to do though but the idea came after people where asking me if they could read my blogs, which meant I was having to share the links around in seperate places, which I didn't mind. But I thought it might make things simpler if people could read everything all in one place. And also, I guess I just thought it was normal to create a Facebook page for my blogs as it's something that most bloggers do. I made the decision to set up a page based on those 2 things but I didn't take into consideration how I would feel about hundreds of people reading my personal business on Facebook. I started questioning weather I was comfortable with that but I tried to stick with it in the hope that I might get used to the idea, but something in my mind can't ada

Raw Honesty (I Can't Believe I'm Posting This)

I am not sure if I will publish this blog once it's finished, I'm only writing it to get a lot of things off my chest and some of those things aren't going to be pleasant. I don't know if I am brave enough to let people read my rawest feelings, especially my family members as I know they like to read my posts. But if you're reading this now then it means I have braved it. Please don't feel sorry for me or anything of that sort, I'm not doing it for that. I just needed to completely offload in a way that I have never done before. I try to always be honest about how I'm feeling when I write my blogs, and I have been so far, everything I've wrote has always been the truth, but I've edited it slightly to make it sound less harsh, I've held back a little because being completely honest about my feelings might upset & worry those close to me, which is the last thing I want. But I need to remember why I took up blogging.. To let out my darkest &