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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 prompt reads as given:

“Health Tagline”…Give yourself, your blog, or your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Again this is a prompt that has been involved in the Health Activist Writer’s Month Challenge during a previous year; so again I thought I would do the prompt a little differently than described.

What is in a name?  Not only is it a very famous quote from Shakespeare’s ‘Romeo and Juliet’ but it  also has a significant value in everyday life; every person recognises themselves by their name.  A name gives an identity  and meaning whether it be a person, a book, or even a blog.  A names enables us to be able to identify a person or an object, as well as being able to differentiate one thing from another.  A name is powerful tool in language.

So to choose a blog name is important; it not only gives the blog its own identity but also gives the writer a voice.  A name gives the audience an understanding of the subject matter of the blog, even before they start to read. So, what made me choose the name ‘My Brain Lesion and Me’?  For starters, I thought the name was reminiscent of a book; of a story and in my opinion that is exactly what the blog is about – it is a story of my life and experiences with living with a neurological condition.

In a previous year, I had decided to come up with the tagline ‘Once upon a Dizzy Spell…A story of a girl living with a neurological condition’.  What made me choose this particular tagline is because as a young girl I loved fairy tales, especially the classic tales of princesses and princes.  I was an avid viewer of Disney films such as ‘Beauty and the Beast’ and ‘The Little Mermaid’ and loved the romantic stories and the promise of a happily ever after.  Another reason for the chosen tagline is that my life living with a neurological condition all started with that very first dizzy spell all those years ago.  And that dizzy spell was the beginning of the journey to where I am now…

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And what if I were to give myself a tagline, what would I choose to give myself?  I was thinking long and hard and decided in the end for:

Stumbling along the silver lining

I decided upon this particular tagline, as for starters my legs have been particularly bad recently, and often due to the trembling, walking becomes a lot more like stumbling!  Furthermore, I would like to think that I am a positive person despite my neurological condition.  For example, I keep a positivity board and scatter various items adorned with positive quotes as an attempt to look for the silver linings in life, as hard and difficult as living with a chronic illness can be, and so the above tagline for myself was born!,

If you had to create a tagline for yourself, what would yours be?  As ever would love to hear your thoughts and suggestions so please feel free to add your comments below…

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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 prompt reads as given:

Health Activist Choice Day 1…Write about what whatever you want today!

I thought long and hard about what I wanted to write about for today’s post.  As we all know living with chronic illness is like riding a rollercoaster with a number of highs and lows; and unfortunately many of these are lows.  However as much as I struggle living with my neurological condition, I try my best to remain positive despite it, and so therefore I would like to write about an achievement that I have finally managed to accomplish.  As most of you may know, due to my neurological condition (a long-standing brain stem lesion) one of the main symptoms that accompany the said condition is severe and constant dizziness.

The dizziness, as we have found out is triggered by certain visual stimuli, such as large stores with its open spaces, high ceilings and fluorescent lighting.  This therefore, restricts me into where I am able to shop,  for example the clothing store Next, which also happens to be my favourite clothing store.  A few years ago, a Next opened up in a local retail store near to where I live, however, I was unable to shop in there because the store itself would trigger the dizziness and vertigo, and as a result make me feel very unwell.  When my carer started working for me, approximately fifteen months ago, we made one of my goals to be able to go into the store that was one of my favourite retailers.  Over the months we have tried and tried to no avail; sometimes we got as far as the door but the dizziness became so intense that we had to go straight back to the car.

However, last Thursday on a whim I decided that we should give it another try. As we are due to go on holiday soon, I still need some new clothes to take away with me and seen some clothes that I liked whilst browsing their website.  I have to admit, I love browsing their website and their delivery options are fantastic, for example you are able to order certain products by 9 PM and have them delivered the very next day.  However, there is a delivery charge, and when you order as much as I have done over the years, it really adds up.

I did it! I managed to go into store, and what’s even more is that I managed to shop and browse their lovely clothing and accessories for nearly an hour! And even managed to buy a couple of items!  I cannot describe the sense of accomplishment that I felt when I paid for my items! I actually did it! I defeated the dizziness and vertigo; pushed through and won.  I admit, there were a couple of moments that I nearly collapsed, and even went back to the car at one stage; and apparently at one point I even went green when the dizziness became so severe it made me feel very sick.  The trembling in my legs was also quite severe, but I took along my wheelchair which made it much easier; and even when I was just pushing the wheelchair it have me a sense of stability, and at least I didn’t have to contend with the worry of my legs collapsing beneath me.

I really have to thank the entire staff of Next at the Talbot Green Retail Store, who really made the experience much easier and were very helpful towards me and my situation.  One staff member noticed how unsteady I looked and offered to open up one of the cash registers to save me from queueing.  And the members of staff who diligently looked for items that I was looking for; going up to the stockroom to show me some of the options that were in stock.  It is fantastic customer service that really helps when suffering from a chronic illness or disability and more than makes us more likely to return.

So, I managed to conquer a very debilitating symptom and managed to physically shop in a store which I love.  Now, I have done it once, I look forward to many more visits to Next…

I hope you have enjoyed the new blog post!  Have you conquered any fears or battled through severe and debilitating symptoms to accomplish something that you have wanted to for so long? As ever I would love to hear your comments and stories of triumph over our symptoms and conditions!!  Feel free to share below in the comment section…

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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 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!

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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.

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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:

Off to work!…What advice would you give to those on the job search?  How do you juggle your job and a chronic illness?  Any tips for the interview?

Looking at all of the prompts for this month’s writing challenge, this is probably one of the more difficult blog posts for me to write as I myself am unable to work because of my condition and therefore have no experience of juggling working and a chronic illness.  So, as a result I have researched online and have found some useful tips for looking for work whilst chronically ill as well as juggling work and illness.

Job Hunting and Chronic Illness: 

  • Get into a routine: Whilst being unemployed, and especially whilst living with a chronic illness, it is often easy to become stuck in a rut, such as sleeping in late and not having a schedule.  However, if you are at the stage where you are able to start thinking of getting a job despite chronic illness, it is therefore advisable to practice getting into a regular routine beforehand so that you do not find it difficult getting up early and so on
  • Re-examine your CV: Living with a chronic illness really limits us in what we are able to do; however it also provides us with attributes that we might not have possessed before.  Therefore, make sure that your CV currently reflects your current abilities and attributes that you can bring to a job position.  Stress your accomplishments to show that you are more than your illness.
  • Do your research: With my condition, a lot of places such as buildings with high ceilings, or those with wide open spaces can make my dizziness worse, and therefore there are certain working environments which would not be suitable for my particular situation.  For example, being in a call centre with the noise and open spaces would make the dizziness extremely severe.  Therefore, for me and those in a similar situation to myself, it may be advisable to research the place of work and perhaps organise a visit to see if the place would be a suitable place of work.  Or perhaps enquiry whether they could make certain adaptations for your needs, for example, I often feel better if I am close to a wall; near the edge of the room where it is usually quieter and with not as much visual stimuli occurring

Working with a Chronic Illness 

  • Provide the basic information to employers regarding your health condition so they are to provide you with certain accommodations: Depending on your personal situation, if there is a need for you to work or if you are simply able to work but need certain accommodations to make this possible, then you would need to discuss this with your employers.  For example, you may need a different work schedule to accommodate treatments, or frequent breaks because of fatigue and so on.
  • Prioritise work tasks: If you are struggling at a certain point, and you feel that you may need to take time off because of your condition then perhaps it would be advisable to prioritise your work, and complete tasks which are urgent before those which are less important so that you are able to be productive despite living with a chronic illness. Make to-do lists, for example, as many illnesses causes memory problems. , and
  • Maintain a good work/life balance: Many jobs nowadays require a lot of energy, and therefore working whilst living with a chronic illness may use a lot of spoons.  If there are a lot of deadlines due, then you may find that when getting home from work, as a result you may not have the energy to do anything else.  Therefore, pace yourself at work, perhaps ask for certain accommodations that ask for a lesser workload so that your life foes not revolve around work and your chronic illness.

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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 is as follows:

Wordless Wednesday…We all know a picture paints a 1,000 words.  Post/share a picture that relays a message or story to the viewer.

 

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Image found on Pinterest

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