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In Chronic Illness

Acceptance Speech: I would like to thank…

April 10, 2014 No Comments

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 prompt reads as given:

And the winner is…You! You just won an award and are on stage, holding your trophy. Write an acceptance speech. Who do you want to thank? How did you get to where you are today? Don’t worry, we won’t rush you off the stage!

Wow, this is an amazing honour and so I think the first people that I need to thank is those who voted for me, as without them I would not be standing here today.

I would also like the opportunity to thank my family, especially my parents who have gone beyond the parental duty in their support that they shown me during the journey through illness, diagnosis and life after. I would like to thank them for all their help and care over the years. For picking me up when I have fallen, for taking me to every hospital appointment, and just by being there for me during the bad times. Just for being your caring and wonderful selves. I appreciate you both so much and cannot express how much you both mean to me.

I would also like my wonderful and supportive friends who I am very grateful that I found, particularly Claire, Aisha, Anya and Hayley. All of your messages, cards and gifts have meant the world to me, and have helped me during the bad times. You girls have shown me what friendship means and also that I am not alone in the journey through chronic illness. To Claire, thank you for all of the enjoyable and fun nights out which we have shared, they have been exactly what I have needed to take my mind off my condition and the symptoms, as well as the opportunity to have a break from being inside the house and enjoying lovely food!

My friends are definitely like stars...they make my life shine a lot brighter — My friends are definitely like stars…they make my life shine a lot brighter

To Aisha – I cannot find the words to describe exactly what you mean to me. Finding you has been like finding a diamond. During my childhood and adolescent, and even into adulthood, friends have come and gone. It felt as they could not accept me as I am, and therefore I am so grateful to have you in my life and know that I have friend that I can always count on during the good times and the bad. You have become more like a sister to me, and I look forward to our many years of friendship.

Anya, thank you so much for all of your support; not just for me but for my blog also. We both connected with each other through our blogs; and you inspire me with your eloquent writing and all of your amazing work in the field of self-management.

And finally, to Hayley who has worked tirelessly to create a fantastic community for those affected by neurological conditions; I am so blessed to have found a place where I belong, and thank you for making me a part of it and giving me a sense of purpose. And to every person who has contributed to Neuro Nula, whether it be through sharing your own personal experiences and stories of living with a neurological condition or connecting to the community via Twitter, each and every one of you are inspiring; thank you for shining a light on what it is to live with such a condition as well as making me and other’s like me feel less alone.

I should also thank all of the readers of my blog ‘My Brain Lesion and Me’. Thank you everyone who has taken the time to read, share and comment on my posts, as well as all of my lovely and loyal Twitter followers. Thank you for your kind and generous words, and a special thanks to everyone who has sent me words of encouragement and support during the darkest moments, or just have taking time out of their day to ask how I am feeling and generally making me feel less alone in the world.

I must also thank to all of the doctors and consultants that I have seen over the years; unfortunately there are too many of you to mention personally, but those doctors who believed me and diligently looked for the underlying cause of my symptoms. For so long, I believed that I was strange; that everything I was experiencing was in my head and after all of you took the time to perform tests and take a thorough history, all of you took some part in arriving at the eventual diagnosis. I now know that it is not in my head; and that is down to all of your hard work. Thank each and every one of you for your patience, diligence and support. We now know that there aren’t many options in terms of treatments; no cure, but that does not stop you trying for me and attempting to give me a better quality of life.

And lastly a thank you to my condition. Yes, it may be strange thanking something which makes my life extremely difficult, and as a result have to live with such severe symptoms on a daily basis. However, despite this I would like to thank the neurological condition for making me stronger; for making me aware that with perseverance I am able to overcome obstacles and challenges that are placed in my way. I have found an inner strength, that I didn’t know I possess and perhaps if it wasn’t for this condition I would not have found the things that I am good at, such as writing.

Each and every person I have thanked has shaped the person I am today, and without all of you I would not be standing here today.

In Chronic Illness

Writing for my health…and my life

April 7, 2014 No Comments

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.

Today’s prompt reads as follows:

Why I write…Tell us why you write about your health. How long have you been writing? What impact has it made on your life? Write for 15-20 minutes without stopping.

Why do I love to write about my health and my life with it? Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed. For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition. However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud. Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad. Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.

Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others. For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community. Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life. Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.

But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face. For example, that not all disabilities are visible. I have heard great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces. This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)

A fantastic benefit of using social media as a means of communicating about chronic illness

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence of alcohol after he was unable to walk in a straight line when asked to perform a sobriety test. Therefore, it is important for those, like me suffering from a chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’ it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see. This reminds me of the many times when I have gone such as to the doctor’s for an appointment, where I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and looked perfectly healthy.

To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.

In Chronic Illness

Need something to make chronic illness suck less? Then check out The Pillow Fort Magazine!

January 15, 2014 No Comments

I love writing, and am always looking for new opportunities to share my writing, other than my blog. Therefore, I was excited when I heard about a new digital magazine which is aimed for young people suffering with chronic illness to make living with such conditions, not only suck less but help to maintain a positive attitude through the battle of illness. So, when I read that the editor and creator of the magazine, Lizzy was looking for submissions, I dug out one of my many notebooks and began writing and editing a piece that I could submit to the magazine. And now, I am happy to announce that the magazine has been published and is ready for you all to read. I have had an in-depth look at the magazine and I can tell you that it is a fantastic one for anyone battling chronic illness to read. It is not only beautifully designed, but is filled with amazing photography and inspiring stories from other young women. To show your support, and help living with chronic illness suck less than you can buy the magazine here

The-Pillow-Fort-2-300x300

P.S: If you have read the magazine and my article, would love to hear your thoughts and comments about it!

In Chronic Illness

HAWMC 2013 Day 30: Recap!

April 30, 2013 No Comments

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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.

Today’s prompt reads as follows:

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favourite prompt? Least favourite? What have you learned?

Well, I did it!! For the second consecutive year I have managed to complete all 30 days with no need to use the ‘free-pass’ cards!! It feels like a huge accomplishment especially as I have experienced several bad days. Preparation seemed to be the key this year, especially as I am busy with other activities such as the Monday and Wednesdays groups that I am involved with and the day out once a week with my Personal Assistant means that I am not in the house all of the time, so I had to write many of the prompts before the day that it was published.

Just like last year, I immensely enjoyed the month-long writing challenge – I loved the challenge of all the prompts. The prompts are not only a lot of fun to write but I also feel that the prompts enable us to look and write about our particular health conditions differently than we would normally. For example, some of the prompts required me to write about topics that I might never would normally. For example, the topic of burnout was selected to be discussed from one of the prompts, and if it wasn’t for the HAWMC I might never have written about the topic. One of the prompts that I found particularly challenging was the Acrostic Poem from Day 13 (Acrostic Poem of my Health Condition) – it wasn’t necessarily the subject matter that was challenging as the whole blog is about living with my health condition, but the form itself. I haven’t written a poem in many years so it was quite a challenge being asked to write one – just glad that I prepared in plenty of time and was able to write a decent attempt!

The prompts like always were a mixture of being, fun, challenging as well as being thought-provoking. One prompt I really enjoyed, but initially found very challenging was the post regarding Adversity (“The flower that blooms in adversity…”). I initially found it very difficult to write especially regarding when I bloom best. However, although I found it challenging, I thought in the end it was one of my favourite and best written post! I also loved the prompt which asked us to ‘spread the love’ and thank some of our favourite health activists; this was such a great opportunity for me to thank those who have supported me and helped me through some tough times with illness (Sharing the Love! I would like to thank…).

I would also thankful for the Wordless Wednesday posts, as it gave a break from writing long posts and was fun coming up with creative photographs and drawings to dictate something without using words! Would love to make this a regular feature but would need some ideas! If anyone has links or ideas to do this please comment below and share!

Least favourites? Perhaps some of the prompts that I had written about during previous writing challenges such as the post regarding caregiving (Carers, How to treat those you care for), and discussing favourite social networks (Why I Love to Tweet) to name but two.

Anyhow, regardless of the good and the bad through the experience of this writing challenge it was a challenge that I thoroughly enjoyed and look forward to taking part next year! Thank you WEGO Health!

What did you think of my posts for the HAWMC? What were your favourite posts to read? Any you didn’t enjoy reading? Loved to hear your views so please feel free to leave any comments/suggestions!

In Chronic Illness

HAWMC 2013 Day 1: What Got Me Started on The Blogging Journey…

April 1, 2013 No Comments

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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.

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 ‘I nvisible 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!