Tuesday, 9 August 2016
Building upwards from bottom...
Whilst I am working on rebuilding my life, I felt that it was time for an update. I have neglected blogging for a little while. Not because my heart isn't in this, but because I've not typically had the words to even express myself in the ways I have wanted to. I have instead used this time to reflect on the occurrences of this tough year. A lot has been happening, for both positive and negative reasons but through all of this, my goal for awareness remains crystal clear. I love raising awareness within my means of comfort and connecting with others, yet I also felt the time away could do me some good. To regather my thoughts and figure out my plan of action to progress forward.
In July, I received three further diagnosis in addition to my primarily diagnosis of Ehlers Danlos Syndrome. These were Chiari Malformation, Basilar Invagination and Vertebral Ligament Sublaxations of the head. Whilst I was not expecting three new, complex issues, I am taking it day by day for now. A new diagnosis is always difficult, let alone three in one day. If I did not laugh, I would probably cry, which I certainly have at points because the realm of rare disease takes a battering on your soul. I have tried my upmost to remain positive but it has not been a walk in the park. I have yearned for a magic wand to appear more than ever. Through all of this, I have been reminded to continue on my quest for health and supported by lovely people, mostly my incredible friend and certified life coach, Denise Archilla of My Chronic Connection.
I am understanding the importance and significance of change and focus now, more than ever. There comes a point in life where you reach breaking point and there are two directions in which you can go. You can continue to sink lower or you can use that energy to build yourself upwards. Rather than continue to break, I can safely say that my version of such a 'moment', finally arrived this year. After spending the last decade as someone who is chronically ill with a very poor quality of life, I feel my heart pulling me in new directions that I am willing to try my best to resolve. More importantly, I feel ready to take the steps to resolve what I can. It is a task I am dreading but is necessary.
During all of this, my future obviously felt even bleaker than usual. I took a good ten steps backwards in terms of turmoil and lack of hope. As I have mentioned before on the blog, I have had my moments where I question what my purpose is. My only talent feels as if it lies in being chronically ill and a collector of rare illnesses but aside from that, I do not carry much belief or confidence in myself. Pain replaced a lot of my ambition and diagnosis hindered my visions of a future. My talents went out the window a long time ago and defining what I am 'good' at has been a momentous task. That was until I was being told something continuously, almost like a sign, one of which I was fairly blind too. At first I thought people were joking or at least had me mixed up with someone else, but then I realised that it was something that I actually feel willing to do almost daily. What was suggested is something that almost everyone who contacts me tells me to do with the skills they feel I have.
For the last eighteen months, I have been warming up to the idea of writing my first book. I have formatted ideas and concepts for a while now, but I wanted to have a strong direction of what I eventually hope will come to be a physically, published book. In order to move forward with this project, I wanted to have a goal in mind of where this endeavour could take me whilst providing a purpose to my current existence. Publishing a book is nothing in comparison to blogging, so it is a place where I have had to build my confidence skills. Writing from the heart is a good place to start. I am pleased to say that for the last few months, I have started drafting many ideas of what I hope to be my first publication. So far, I have really enjoyed the experience and hope that by sharing this project with readers of my blog, I may feel obliged to not lose faith in myself and my future aim.
I am a writer at heart and would love to one day become an established author. I might not have all the faith and belief in myself just yet, but I am starting to see that I have somewhat of a talent in terms of writing and using this technique to raise awareness. I feel there is an audience I have not yet reached in terms of chronic illness awareness. We all have our lane, some people are fundraisers, some people start charities, some people travel the world spreading the word. My niche has always been to write with the hope to connect. I feel that beginning this process as a blogger has been initial proof to me that this can be a possiblity. Words can carry so much comfort in times of distress and help me more than I can express. With a little more belief in myself, I am hoping to turn such dream and hard work into a form of reality, one day. Whilst publishing this may be the most difficult part, I am hoping that my efforts and hard work will pay off. What will be, will be and I hope that during this process, I discover a more gentle and positive side of living with incurable disease.