My Story for Spina Bifida and Hydrocephalus Awareness Week 2016 #GoYellow

Donate now with this link: https://www.shinecharity.org.uk/support/donate

For those of you who followed Charlii and Meg, you will know that one of my reasons for blogging is to make more people aware of anxiety and my conditions NF 1 (will feature at later date) and Hydrocephalus.

This week is Shine Charity’s Hydrocephalus Awareness Week, so I thought it would be quite fitting to talk about my experience now. I have also donated some money to the charity, along with this post, and I encourage anyone who has some spare cash lying around to do the same as it is such an important cause and one that does not get the recognition it deserves. Please use the link at the top of the post to access the donate page.

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So, this is me. I am 18 years old and studying French and Linguistics at university. I love blogging and writing and this blog originally started from me wanting to talk more about anxiety.

I knew that I had NF 1 ever since I was little and I have been lucky enough to have it very mildly. In January 2012, I had to have a routine MRI scan for my NF 1. I had never had one before, but we were not expecting anything to happen from the results. However, we soon got a call saying I had fluid on the brain, and within a week, I was sent up to QMC in Nottingham with a view to having brain surgery to correct the Hydrocephalus.

However, within 24 hours of the operation, it was decided that the surgery would not happen as I was actually fine in myself and brain surgery is something only done as a life saving cure.

After all that rushing around and having a week of scary hospital visits, it was suddenly decided that I would be on a watch and wait scheme. And it has been like that ever since.

For the next few years, life was completely fine. I continued everything as normal. A couple of years ago though, I started getting anxiety about my condition. I think when I was first diagnosed I was still young, and it was only in the last few years that I started to fully understand what Hydrocephalus was. Every time I got the slightest headache, I would panic and feel really low. These spells did not happen much though and usually occurred when I had a hospital check up as it would force me to think about everything again.

However, Autumn last year, my anxiety got a lot worse. I did not go to school for the majority of the term and ended up teaching myself some of my A Levels. I had severe panic attacks that meant I had a few trips to the hospital and I felt really down and alone. One thing that annoyed me during this time is that people sometimes don’t understand what anxiety is. Some think that anxiety is just worrying about something occasionally, when in fact it is a medical conditions in itself. Β I struggled with going to school, not only because of my anxiety about my health and wanting to stay at home with my mum and dad, but I also have never been your typical student. I do not drink alcohol and I hate going out at night to club and bars etc. I do like to socialise, but I am a daytime person. My idea of a perfect day is finding some lovely artisan craft fair to explore, have lunch somewhere nice, blogging, having a nice hot bath and going to bed to watch Strictly! I would much rather spend time looking round a National Trust property with my parents than do all the stereotypical stuff associated with students. This made it really to go back into school as I felt like I did not fit in.

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Come Christmas 2015 though, I was starting to feel better and managed the rest of the year in school, with a few adjustments such as going to help my mum at school so I could be in a different environment for a part of the week.

Since then, I have had a few wobbles, but nothing as serious as the panic attacks that made me go to hospital. Being able to blog on Charlii and Meg during this time helped me to express how I was feeling and that developed my love for blogging further because it is somewhere to write down all your feelings, but also spread the word to other people who might feel the same.

Since starting my own blog however, I know that I have not written about these things, so I feel like now is a suitable time to let you know my story. I am so grateful to have found blogging and writing as they provide me with a means of creative escape and open a box of new opportunities which I would not have discovered if it had not been for wanting to write about my anxiety and Hydrocephalus. Now my happy place is sitting in front of my laptop with a cup of tea, blogging about anything and connecting with other bloggers.

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This isn’t my desk wish it was!

Please donate using the link at the top of the post and it would mean the world to me if you cited this blog as one of the reasons for donating. Shine is a charity close to my heart, but certainly does not get the funding and support it deserves.

If you want to find out more about me and my life, do not hesitate to contact me using the details in the contact page. Whether you also suffer from anxiety or want to know more about Hydrocephalus or NF 1, I am happy to help.

Megan x

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