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HAWMC 2013 Day 6: A Letter to my Condition….

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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:

Write a letter to your condition – what do you want to get off your chest? 

Unfortunately, today I am feeling particularly unwell, and am not feeling up to writing.  So, instead I have decided to republish an older post, which was along the same line as today’s post, which asked us to write a letter to our condition.

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Dear brain lesion,

I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.

I find you very odd; I experience so many fluctuations in my condition – how I feel, and the severity in which I experience the symptoms that you cause me.  These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!!  And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.  

Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you.  You are rare, and not understood, even doctors can be baffled by you.  This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on.  I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with.  The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you.  There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.

I have lived with you for so many years now; many of those years I did not even know of your existence.  Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear.  Every turn I make, you are their, like a shadow; a dark figure lurking, waiting.  And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs.  You causing embarrassment; you causing injuries and pain.  The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control.  When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed.  Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life.  It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.

You have made me your victim, from something that I cannot escape.  Never will I escape you; you live deep within me, deep within my brain, there will you be there forever.  But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of.  Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.

I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path.  And I will not let you beat me – all the obstacles and challenges that you present , I will overcome; find my own path into achieving everything that I wish to.  I am hoping to go on holiday, possibly on a cruise, and I am determined not to let you beat me – I will have a good time despite you. 

And for that I thank you.

Rhiann x

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HAWMC 2013 Day 4: Sharing Resources

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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:

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go when starting to advocate for themselves or a loved one.  Remember to include sites that lead to successful self-advocacy! 

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This is a particularly difficult prompt for me because as I have mentioned before my condition is rare and as a result there are not that many resources out there for conditions like mine.  However, I will try and give it a go!

The first resource that I would recommend would be the Brain and Spine Foundation‘s Website.

The website is for anyone who suffers with any brain or spine conditions.  As well as the website, the organisation also runs a helpline, where you can contact a nurse specialising in neuroscience, either by phone or email.  This service offers the opportunity to gain answers to any questions patients with brain and spine conditions have or simply gain emotional support between appointments with their consultants.  The organisation also offers various factsheets and booklets explaining a wide variety of neurological symptoms, investigations regularly used by neurological consultants (e.g. MRI scan) as well as advice on how to live with neurological disorders.   They even offer a sheet on questions that may be of use to asking doctors, whether it would be with your General Practitioner or with a neurologist. Great for self-advocacy or advocating for someone you love!

Another great resource for anyone newly diagnosed with a neurological disorder is NeuroSupport a charity offering non-medical advice for those with neurological conditions and their families and carers.   The charity is based in Liverpool, UK, however their website offers information and links to other resources for anyone living in the UK.

If anyone living in the UK, wish to campaign for better services for those with neurological conditions, then the Neurological Alliance is an excellent resource for advocacy and self-advocacy for both patients, carers and the wider family.  The Alliance works with 70 other brain and spine charities to help give patients a voice both locally and nationally.

Those are the key resources that I have personally found.    Unfortunately, there does not seem to be many key charities or organisations for those with neurological conditions, and as a result not that many resource that I could find or have helped me.  The resources that I have found  are for neurological conditions in general as there are no specific organisations for a condition like mine.  If any of you know can sign post and me to other organisations then please get in touch and leave details in the comment section below!

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December is here!! For Christmas give the gift of a nomination….

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Well the ‘National Health Blog Post Month’ is now officially over, and now December is here it is the start of the holiday season – the time to start preparing for Christmas; buying and wrapping all those presents, decorating the house with decorations and of course, that dreaded big Christmas shop.

One way in which you can reward  and give a gift  this season to your favourite health activist or health blogger is to nominate them for one of the WEGO Health Activist Awards for 2012!!  Have more than one favourite health activist?  No problem, the beauty of these awards is that you can nominate as many bloggers’ as you wish, even nominating for someone in more than one category.

This year, WEGO Health is making these awards bigger and better than last year with 16 categories:

Advocating for Another Award: for someone who advocates for the health condition of someone they love

Best Ensemble Cast: a group who advocates and raises awareness

Best in Show – Blog: someone who exemplifies the use of blogging

Best in Show – Community/Forum: someone who exemplifies the use of a community or forum

Best in Show – Facebook: a health activist who exemplifies the use of Facebook

Best in Show – Twitter: a health activist who exemplifies the use of Twitter

Best in Show – Video: a health activist who blogs and uses video to advocate and raise awareness of a health condition

Best Kept Secret: someone in the health community who does a lot of work to advocate and raise awareness of their health condition but who does not receive much attention 

Health Activist Hero: an inspiring, supportive and knowledgable health activist

Hilarious Health Activist Award: a health activist who makes you laugh and brings a lot of humour alongside their advocacy

Ms/Mr. Congeniality Award: a health activist who always has a kind word, a positive note and a virtual hug for others

Paperboy Award: an award for the health activist who always delivers the latest and greatest health news and research

Rookie of the Year: a health activist who came on the scene in 2012 but has inspired the entire community

Silver Stethoscope: a healthcare professional who utilises social media to make the world a better place

Trailblazer Award: for a health activist who is ahead of every curve and excited by new technology

Unsung Hero Award: the member of your community who may not know how amazing and valuable they are.

 

So this year why not give them the gift of thanks, and reward the amazing dedication and hard work for your favourite health blogger and health activist and nominate for one of the above awards?  It will mean so much to them, and really give them the push to continue their work into 2013!

Remember the closing dates for nominations is the 31st December 2o12.

To nominate someone now you can vote here 

 

 

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NHBPM Day 30: Recap

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Well the ‘National Health Blog Post Month’ is officially over.

I would like to thank WEGO Health for providing all of the wonderful prompts for the entire month.

I would also like to thank all my readers who commented on Facebook, Twitter or on the blog itself.

It has been a very tough month of writing, especially because at the same time I have also been busy with volunteering, as well as my group and going out with my Personal Assistant, so much of my writing has happened on the days in which I am free.  This has involved much organisation, preparation and hours at my computer typing away!

I would like to say that I am proud that I have managed to write for every single day for the month of November – not even needing to use any of the free passes that were given to us at the start of the month, even though at times I really did not feel like writing I wanted to continue and complete the entire 30 days so I would feel that I have achieved something.

This challenge has had a great mix of fun topics such as ‘Sneak Peek in my Bag‘; ‘Giving Thanks‘ and ‘Flag for my Community‘ through to the more emotive topics, for example ‘O Health! What do I think of thee? Let Me Count the Ways…‘ and the ‘Book Report! Tying it to My Life!‘, as well as the topics that relate to health and the health conditions in which us health activists live with and has given us a chance to educate people on how these conditions impact upon our life, such as the ‘The Ever Changing Goal Posts‘, ‘Being there for someone with a chronic illness‘ and the related post ‘How to care someone with my condition‘ and a post regarding why the chronically ill love the internet.

Along the way, there have also been many prompts that have sparked though-provoking debates, as well as reflecting on the issues that affect daily life with chromic illness, which has been effective in spreading awareness and making people more aware.  Some of these issues that were raised includes:

 

I would love to know your thoughts on the ‘National Health Blog Post Month’- what did you think of the prompts and subject areas that I have written about during the past 30 days?  What did you think the most enjoyable posts was?  And which posts did you not enjoy?  Have you any criticisms or suggestions on how any part of the NHBPM could be improved on for next year?

Please leave any comments or suggestions below!  And thank you so much for all your time reading and commenting on my posts!  I am going to take a nice long break now!!

Until next time….

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NHBPM Day Twenty-Nine: “If I could accomplish one thing in 2013 it would be…”

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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?

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