Tag

2013

Browsing

318172_10150737724974254_36556179253_11203093_667572096_n

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as follows:

Why you write – tell us a little about why you write about your health online and what got you started.

imgres

Well, I got started writing about my health condition online on this very blog just over a year ago.  For years, before I got my definitive diagnosis, I was for years banded around the healthcare system visiting various consultants in different specialities, hearing the “it’s all in your head” diagnosis again and again.  Throughout this time, I felt scared, alone, isolated and so on.  The loneliness and isolation I felt was extreme – I felt as though I was the only one that was going through the pain of misdiagnosis and all of the symptoms that I have had for so long they were like old friends.

And so after my diagnosis, and joining various support groups; I felt it was time to start a blog – a place in which I can share my story and let other know that they are not alone.  Perhaps also hope – hope that one day they will too find that diagnosis that they have long been searching for.  It was actually a close friend, someone who also write her own fantastic blog, whom I met in a support group in which I am a member of who first suggested that I start the blog; encouraging me to share my story with others.  I had already regularly wrote in a journal, and felt a public blog was a natural progression for my writing as well as raising the profile for neurological conditions, which still seems to be under-discussed and not really publicised the same way as other conditions.

My condition is also unusual.  It is so unusual, that I have yet to meet anyone who has been diagnosed with the same condition, and so by writing the blog, I can maybe one day meet others with the same diagnosis.  However, this is not so important as I have not learnt that it is not the diagnosis that connects us but instead the experience of living with chronic illness.  There are many facets within chronic illness that are a part of the majority of chronic conditions such as fatigue, depression, pain and so on.

Apart from keeping the blog up to date, I also regularly take part in the ‘Health Activist’ Chat (#HAChat) on Twitter, in which myself and other health activists discuss various topics relating to healthcare and health activism.  I have also written articles for the ‘Invisible Illness Awareness Week‘ and a forum called ‘Disability Sanctuary‘.  In addition, the blog has enabled me to initiate contact with others with brain lesions, a couple of whom also has lesions on their brain stem like me, and this would just not be possible without the blog.

This year sees me getting involved with the ‘Health Activist Writer’s Month Challenge’ for the second year.  I get involved not only for the challenge for writing for an entire month continuously, but in my opinion the original prompts also challenge me as a writer and blogger – making you think deeply about the conditions in which we live with and writing them in a way in which we wouldn’t normally discuss them.  In addition, the HAWMC also allows us all the opportunity to connect with other health bloggers and read more about their journeys with chronic illness.  I have had the wonderful opportunity to meet many other health activists and bloggers through WEGO Health and the HAWMC.

And there you have it – how I started with how I started blogging about my health condition!

Well, everyone welcome to another post of the WEGO Health ‘National Health Blog Post Month’ for 2012.  I will write another post tomorrow which will sum up the experience of the month-long writing challenge, and a quick recap of the topics that have been covered and so on.

The prompt that I have chosen for today asks us about future plans, and what accomplishments we would like to complete during the coming year.

Plans? That word is one which the chronically ill hates – living with a chronic illness makes it hard to make any kinds of plans.  Never knowing how you will feel day-to-day, or even from one moment to the next makes it almost impossible to make plans.  We don’t like to make concrete plans such as booking tickets to see a show or a music concert just in case we are unable to attend.  And when friends asks us out somewhere; our response is usually “I would love to, but I will have to say how I am on the day.  Is it okay if I get back to you?”  It can be very frustrating, not being able to do all the things we like, when we want to do them.  Often, when we cancel plans with friends a lot of the time; these friends stop asking; in this case, of course they are not real friends anyway.

But that said, in 2013 I would like to be able to accomplish going out regularly like I have been doing with my P.A, and pushing my comfort zones somewhat; to try going to new places.  The most difficult aspect of the condition which I live, is the difficulty which I have with big, spacious buildings which have high ceilings, not only does it mean that I miss out on going to some of my favourite shops that are near to me, but also narrows my world that bit more, especially as many of the new shops that are being built have high ceilings.

But maybe if I push myself that little bit more, I will be able to go in them, even for short periods of time, so I can buy the clothes that I would like (and so I don’t have to worry about postage and package costs).  I know it won’t be easy; the dizziness will be extremely intense, and will probably feel incredibly unwell and weak afterwards, but is that the price I will have to pay to lead a more ‘normal’ life? It will give me more confidence and widen my world more, given me more places that I can explore!…

What would you like to accomplish during 2013?

Pin It