Sunday, 4 December 2016

Sunday Stories | Nicole's OCD Story

Over the past few weeks you might have seen me on Twitter asking for people to get involved in my new series, well today that series is finally starting! For the past 5 years I've often used my blog as place to talk about my health and to raise awareness of my various conditions but I'm not the only one who suffers with a condition that is misunderstood, rare or just not talked about enough. I wanted to create a series on my blog where every week one person could talk about their condition(s), share their story and raise some awareness. I know how important it can be to feel like you are being heard and listened to so I wanted to give others the opportunity to use my blog as a space where I know they will be heard.

Every Sunday a new story will go up and I've got a wide range of conditions being talked about, both physical and mental health conditions. I'm really excited to introduce everyone to you! Nicole is going to be kicking off the series for me so I'll hand things over to her.

I'm Nicole and I have obsessive compulsive disorder, more commonly known as OCD. I also suffer with health anxiety, emetophobia (which is a serious fear of being sick) and depression. However, today for Shona's fantastic series, I'm going to be sharing my experience of suffering with OCD.

Can you tell us a bit about your condition and how you were diagnosed?

For all those who don't know what OCD is, it's a mental illness, it's an anxiety disorder and it's made up of three parts. The obsessions: which are the intrusive, repetitive and unwanted thoughts which can be about anything from religion, to sex, to germs and contamination. We all get these intrusive thoughts, but someone without the illness will dismiss them and carry on as usual. However, someone with the condition does not dismiss them. Instead they perform compulsive behaviours in order to relieve the anxiety that these intrusive thoughts are causing them. These behaviours can be overt, meaning that you can see them such as repeatedly washing your hands or covert, which you can't see such as repeating numbers in your head. People with OCD also might compulsively avoid certain places or behaviours to avoid intrusive thoughts. And then there is the disorder part; it affects every single thing you do and is NOT a personality trait, but I will go on to this in a bit.

I suffered with OCD throughout my childhood, although it was never officially diagnosed. I was a very anxious child and performed the compulsive action of keeping my fingers crossed at all times in order to stop bad things happen, things which didn't really exist at all. More recently, in June 2016, I was diagnosed with OCD, after I went to the doctor with bleeding, very sore, cracked hands and told him why they were like that. He was very sensitive and understood what I was going through, which was a relief for my little anxious mind.

How does your condition affect you?

A lot of people misuse the term OCD and don't fully understand what obsessive compulsive disorder really is. They think it's about being neat, organised, worried about germs or double checking your door before you've left the house. This isn't true at all. Although these are typical behaviours of someone who has OCD, they are taken to the extreme. When I was really ill, I used to wake up in the night in panics that I wasn't clean enough, I therefore became very tired, emotional and irritable, my hands became so sore from excessive washing and bleaching that they would bleed and bleed, even moving my wrists became painful. It destroyed friendships and relationships; I couldn't touch people or have a hug with my parents. I've damaged my physical health by not eating. Soon enough I became trapped and isolated in this little bubble of mine, stuck listening to the bully inside my head day in and day out.

Do you have any tips for someone who is newly diagnosed?

If you are diagnosed with OCD, it does not mean you are crazy or insane and belong in a mental health hospital. First of all, you should be so proud of yourself. You've got help and spoken up about the issues that were affecting you. You've taken the first step on the very long, rocky road to recovery. But you've made a start and that's the main thing. Don't try and dismiss the doctors diagnosis. I know it can be hard to take especially if you weren't expecting it, but acceptance is the biggest tool in recovery. Once you accept that your ill and are willing to give treatment a go; whether that be medication, CBT or lifestyle changes, you will be able to handle it a little bit better. It doesn't mean that you will be better in a fortnight, this isn't a throat or ear infection. You're fighting the brain, the most complex part of the human anatomy, but you are strong and I'm so proud of you.

What is one thing that you would like people to remember about your condition?

OCD isn't a personality trait. It's not an adjective. It's a serious mental illness, that can destroy people's lives. You wouldn't make a joke about someone with Down syndrome or about someone in a wheelchair, so why do it about mental illness! Why make cards and other tasteless junk, using the term OCD and changing it into obsessive Christmas/ cat or whatever else disorder. It's offensive, it's rude and above all it adds to the stigma that surrounds mental health, which consequently makes it so hard for those suffering with the illness to speak out about it leading them to suffer in silence. Next time you hear someone using the term OCD incorrectly, question them on it, educate them, let them know what OCD really is and the reality of suffering with the illness. The more we do this, the quicker we can end the stigma that surrounds mental illness all together.

You can find Nicole on Twitter and she also has her own blog, Thrifty Vintage Fashion.

Tuesday, 29 November 2016

Exciting News | Marfan Research Breakthrough

Today's post is about something that I've had to keep very tight lipped about for a little while and believe me it's not been easy! It all started about 3 weeks ago when a lovely lady from the British Heart Foundation posted in one of the Marfan FB groups I'm in, she was looking for people to get involved with something they were planning. Despite the fact that she was looking for people from specific locations I sent over an email anyway, I never turn down anything Marfan related. We chatted back and forth and when I found out what the plans were I was 100% on board and I've been wanting to shout about it ever since!

If you don't know who BHF are then let me tell you about them, they're a UK charity that funds research into improving treatment, diagnosis and prevention of cardiovascular disease. I'd always associated them with things like heart attacks, not my rare condition, so I was surprised and delighted to hear that they had been spending time researching Marfan Syndrome. This is where the secret part comes in, I've not been able to discuss anything about the research they've been doing until now and I can't wait to tell you all. I realise that it won't be as exciting for you as it is for me but I really wanted to share it anyway, especially as I'm involved in it all in some way.

My condition can cause the aorta, the main artery in your heart, to balloon and when this happens it is called an aortic aneurysm. If you read my blog then you'll know I have one of these and was recently told that I will definitely be having major open heart surgery to replace my aortic root at some point, we just don't know when. These kinds of surgeries are performed to prevent the aorta from bursting, this is called an aortic dissection, and up until now we didn't have a very clear idea about what caused this to happen in Marfan patients. However, BHF researchers at the University of Cambridge have for the first time created blood vessels in a petri dish which mimic Marfan Syndrome in human arteries.

They have managed to use these blood vessels to gain a better understanding of how the condition can lead to fatal aneurysms. Their results explain why previous trials, that have attempted to slow down the rate at which the aorta balloons, have widely been unsuccessful. Using the blood vessel model researchers have found that the pathway initially thought to be responsible for the development of aortic aneurysms in people with Marfan actually only makes up part of the picture. They were then able to tell that a separate pathway was in fact far more critical in causing the aneurysms. They hope that this new information will enable them to go on to test new drugs on the blood vessels to look at their potential to prevent people with Marfan from developing such problems. So, this research is too late to change my situation but this is big news. This means that in the future people like me might not need to have major heart surgery in their 20s or 30s, they could go on to live a healthy life for longer without any major intervention! As I said if you don't have Marfan then obviously you won't find this quite as exciting but for me this means the world.

Once I found out about it all I jumped at the chance to be involved, both my granddad and my uncle passed away quite young from aortic dissections so I want to be able to raise awareness and make a difference in any way possible. I've been included in the press release and we are really hoping that people will pick up the story, it's exciting news for the science and medical world in general. I'm not sure how big a part I'm going to play in it all yet but I know regardless that there are some amazing plans ahead that I will tell you all about in time! Thanks to the British Heart Foundation the future now looks a little brighter for myself and other Marfan sufferers, I'm excited to see what happens next.

You can learn more about it all by reading my guest blog for the BHF or their piece about the research.

Monday, 28 November 2016

5 Years Of Blogging

5 years ago on the 28th of November 2011 I sat on my bed with my netbook, a new page open in Blogger, ready to write my first post. My blogging journey began with a short stint on Youtube, where my original blog name freshbeautyxox *cringe* was born but when I discovered the world of blogging I knew that writing was the only thing for me. My first post was short and quite frankly didn't make much sense but it was something, I didn't know then but it was the beginning of a journey that would change my life for the better.

I may have started out as a beauty blog but from the start it's always been about more than just the latest product in Boots, it's been an escape from the reality of the world around me. Blogging has gotten me through everything from my GCSEs to major surgery and I honestly don't know how I would have survived these past 5 years without it. My blog has helped me develop as a person, I know more about myself now than I ever have before, I know who I want to be and where I want to go. From the outside it probably just looks like a few fancy photos with some words enclosing them but for me blogging has always been more than that.

I've grown up with my blog, if you've been here from the start then you will have seen me change from a spotty and shy 14 year old to the person I am today, a strong and resilient young adult. I've never taken for granted how much this little corner on the internet has improved my life and not just in terms of the opportunities I've gotten. I've made friends for life that I rush to when I have news to tell, friends who comfort and support me in rough times, not to mention the hundreds of people on social media who are there for me through the good times and the bad. It's no secret that I've struggled with my health a lot over these past 3 years and without my blog I fear I would have fallen deep into a dark hole, spending my days struggling to find the will to get out of bed. This platform though has enabled me to turn things around, using my experiences to raise awareness and support others. 

Someone asked me recently where I see my blog going in the future and honestly I'm not sure. The content I've been producing recently has left me feeling the most comfortable I've ever felt, for most of this year I've regularly struggled to blog but my new direction has left me with a renewed motivation. Talking about lifestyle and disability related topics is where my heart seems to lie but beauty posts will always be part of my blog, that will never change. 

Looking back on the past 5 years I have only happy thoughts towards blogging, things have been bumpy here and there but at the end of the day I will always come back to my laptop, in seems that it is forever engraved in me to do so now.
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