A little update just before Christmas...

So surgery is complete and I'm home!!! In perfect time for Christmas! Now surgery was successful and don't get me wrong I'm thrilled, I have my face back and don't look unwell anymore. But thats the key I don't LOOK unwell anymore. This is one of the hard truths for someone that lives within an invisible illness. Its pretty self explanatory but an invisible illness is an illness that you cant see, meaning someone doesn't have things that make their illness be known such as wheelchairs, walking aids etc. The hardest thing when living within an invisible illness is how because you look normal, people almost forget that your unwell. Now this has its positives but also has its negatives. (I'm going to discuss the positives and negatives in a future post ).

One of the big negatives is people forgetting that your unwell and not understanding the constant battle you have on your hands. Now yes I look a lot better without the tubes across my face which I'm so thankful for but when people cant see them they forget that actually I still need those tubes they are just now surgically placed into my stomach so they cant always be seen.

I still have all the same condtions I'm not magically better now because ive had surgery, this is hard for some people to understand, why have surgery if its not gonna help you get better. Well surgery has simply given me my face back and that's enough of a reasons for me to have surgery. Although I could do without the infection and nerve damage just before Christmas.

That's one of the hard things when living with a long term invisible illness, the fact that your never going to be rid off it. I'm never going to be well again as there is no cure, yes I will have good and bad times which I'm so thankful for, having times off feeling really well makes everything easier but unfortunately my conditions aren't just gonna disappear.

I have a connective tissue disorder which unfortunately has a lot of conditions that come along

with it. My connective tissue disorder is known and Ehlers-danlos syndrome (EDS) and it is a rare inherited condition that comes present from a mutation in my genetics meaning that I have faulty collagen. Collagen is like the glue within your body and obviously the lack of this within my body leads to a lot of complications. These complications can be different between every person which makes this condition very hard for doctors to always understand, For example one medication that works great for one person doesn't work for another making some symptoms very hard for them to treat.

Due to EDS been a rare condition it needs a lot of awareness raising as the majority of people have never heard off it. As I guarantee most of you reading this probably haven't heard off it. So that is going to be my goal next year! To raise awareness of the condition that has changed my life! Also next year I'm aiming to write 3 blog posts a month giving me the chance to discuss my life with this condition in an aim to raise awareness as well as giving everyone an in sight into my life and the battles that come along over the coming year. Also hopefully by raising awareness I can also give people an understanding of what life is like living with our condition. Finally for 2017 I have a few things planned for fundraising in an aim to raise money in to funding research into treatments to help us live life to the full! Including one of my loved ones cycling from London to paris!!

Id like to hope next year is going to be a better year than this one and hopefully I can share my story with everyone as the year goes on.

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Evie x