Writing for my health…and my life

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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:

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.

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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
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.

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And the nomination goes to…

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Welcome to the final day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

That’s a Wrap!  Nominate someone for a Health Activist Award and write a post about why you nominated them!

 

I nominated someone for the ‘Health Activist Hero Award’ sometime ago.

The person was a very good friend of mine, Anya.  Anya also has her own blog ‘The Patient Patient‘.   Anya writes about living with several long-term health conditions.  However, this is not the only focus of her blog, but she also writes about the self-management of such health conditions, and how patients can and should be involved in their own care.

Not only does Anya write so eloquently and passionately about the issues she discusses in the blog, but she also chosen a career path in this particular field, and also mentors others, as a tutor for Self Management UK (formerly the Expert Patient Programme, and also speaks to healthcare professional and students regarding patient involvement and the biopsychosocial model of disease.  But, alongside all this, Anya is a great friend and there for me and others who are experiencing tough times due to long-term health conditions.

In my opinion, Anya is a Health Activist Hero who really deserves to be recognised for all she does; and for helping give patients a more active role in their own care, and educating future doctors to the importance of patients and how they can be an equal participant in their own care.

To nominate someone for a WEGO Health Activist Award; you can do so by visiting: http://awards.wegohealth.com/

HAWMC 2013 Day 14: Sharing the love! I would like to thank…

 

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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:

Thank a few of your fellow Health Activists for what they have done.  Call them out by name or twitter handle.  Share your love!

Ever since I began this blog back last January I have been blessed to have met some wonderful people through the blog and twitter.  This gives me the most wonderful opportunity to thank some of them who have made the most impact; whom have been inspirational; and those who have not only given me support, but have also supported so many others.

The first person I have to thank is Marissa (@marissaabledis) who was the first person who inspired me to start the blog; as well as given me the confidence, and for always supporting me in everything that I do.  As well as this, I would also like to mention her outstanding work last year for her fantastic ’12-12-12 Project: 12 Months; 12 Journeys; 12 Lessons’ series, in which I was honoured to be a part of.  In this project, Marissa highlighted various chronic conditions, educating herself on all them as well as through a podcast learn about the person’s journey with the condition.

As well as all this, Marissa is a fantastic advocate for those living with chronic dizziness; and is a great supporter of everyone living with dizziness.  Soon she will be embarking on a series of podcasts with a friend of hers about living with dizziness.  The series will be called ‘The Spin Sisters Podcast’.  The details can be found on their Facebook Page .

Another health activist who I really admire is Pamela (@dystoniamuse) and I truly love her blog ‘Chronicles of a Dystonia Muse’; it’s a light-hearted blog which chronicles Pam’s experiences with a neurological condition called Dystonia.  Pam is a true advocate for patients with Dystonia; and does a lot of work to bring awareness of the condition as well as supporting those already diagnosed.  Not only is her blog fantastically well-written; but Pam has also become a great friend and supporter.  Pam also makes the effort to comment on many posts that I have written, all of which complimentary.  I really appreciate the support and care Pam has shown me, and this is a brilliant opportunity to thank her, for her support and let others know of her great work as a health advocate.

Another health advocate that I would like to acknowledge is that of another good friend; who also helped set the ‘Spoonie Book Club’ that I am a part of, is Anya from the brilliant blog ‘The Patient Patient‘.   Anya successfully advocates for herself and others living with long-term health conditions.  Anya mentors others living with long-term chronic illnesses as part of the Expert Patient Programme as well as talking to medical students on the patient perspective of the biopsychosocial model of disease, which can only benefit all patients as newly qualified doctors reach a better understanding of what it is like for us all living with chronic illnesses, leading to better understanding and treatment from the medical profession.

And lastly I have to thank all those involved with the upcoming magazine – ‘Unseen Magazine‘ – a magazine for all those living with chronic illness; attempting to improve the lives of everyone battling long-term health conditions.  They really deserve so much recognition for their work, and for giving us all living with chronic illness a voice, and providing us with something that we can relate to.  And a special mention to the magazine’s editor Aisha who have not been another great supporter of mine but has truly become a special friend too.

Other blog and health advocates who are worth a mention:

Kim – ‘Hope Whispers‘ – a great blog chronicling life with a rare liver disease, Budd-Chiari Syndrome

Sarah Levis – ‘Girl With The Cane‘ – another great advocate for those with disabilities.  Sarah uses her experiences with acquiring and living with the effects of physical disability as well as her work with those with intellectual disabilities, to approach and write regarding disability advocacy, education and associated issues in her fantastic blog.

 

Who are some of your favourite health activists or bloggers?  Share the love and comment below!….

 

HAWMC 2013 Day 2: Brain Stem Lesion? Here’s all you need to know…

 

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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:

Introduce your condition(s) to other Health Activists.  What are 5 things you want them to know about your condition/your activism 

For you all that are new to the blog and therefore to me – Welcome!  My name is Rhiann and I am 27 years old living in a small town within South Wales (UK).  The conditions which I live are a long-standing brain stem lesion and spastic paraparesis.  Both are as a result of damage to the brain, in which I suffered at birth (or so the doctor thinks) however I was not diagnosed until I was 24!

The brain-stem lesion basically means that there is scarring on the brain stem.  As a result of this, I live with constant dizziness with which I have suffered since I was approximately 8 years old, although it may have been before this age.  As well as the constant dizziness, I also have episodes of vertigo (spinning sensations) and visual disturbances.  The spastic paraparesis is connected with the brain stem lesion, and causes stiffness and weakness in the legs, and neuropathic pain.  The difficulties I experience with my legs can result in a lot of falls, especially as they often give way on me.  Lately, I have been experiencing episodic periods of numbness in my legs and cannot feel any sensation.

These are the 5 things that I would like to share with anyone new regarding my health condition/activism:

  1. My condition and the effects that it has on my life is for the most part invisible, and therefore it can be hard to accept that there is anything wrong.  But there is – and although the symptoms cannot be seen, they still have a huge impact upon my life and am unable to do a lot because of it 
  2. You are unable to compare one sufferer of a neurological to another – think of us all as snowflakes.  Like snowflakes, each case is unique as and it is possible that mot all patients will exhibit the same set of symptoms.  The types of symptoms and the severity of the symptoms both can vary widely from patient to patient.
  3. The condition is unpredictable – apart from the dizziness which is constant; many of the other symptoms can appear with no warning.  Added to this, I as the symptoms are unpredictable, I never know how I am going I am going to feel from day-to-day, sometimes even minute-to-minute.  Because of this it can be extremely difficult to make social plans with friends, as there is always a possibility that I will need to cancel
  4. Although symptoms can be unpredictable, I have however found that there are certain triggers that can exacerbate the severity of the symptoms.  These include fatigue (a major factor that can increase the likelihood of symptoms occurring), the common trigger – stress!  I have also found that the cold weather can really affect the spasticity in my legs, and so during the winter months I ensure that I really make sure my legs are warm when out, such as thermals underneath my clothes.  In contrast the very hot weather can also increase the severity of the spasticity and other symptoms, and during the summer I have to make sure I drink plenty and stay in the shade as much as possible.
  5. There is no treatment or cure for my condition, yes, I take some medications, but they are only to try and control the symptoms that I experience (although I have had little success with them).  The medications are for management of the symptoms rather than to treat the root cause – the damage has been done and unfortunately cannot be reversed.  Due to this, the condition is life-long, and at times can be disabling; there are times when my legs are so weak that I cannot get out of bed, or the dizziness is so bad that I am falling over the place, and so just need to lie down on my bed and rest.  The condition is also rare and so there is no real support for those like me (one of the reasons why I started the blog), and because the condition is such an enigma there is little research or literature on it, or no charity or organisation to provide support or advocacy – basically my condition is unknown.

In terms of my health activism I am on several different social networks.  You can find me on

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

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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.

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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!

WEGO Health Advocating for Another Carnival: Challenge Accepted!

Welcome to the third day in the WEGO Health  Advocating for Another Blog Carnival.  The prompt given was the following:

Leading a community isn’t all sunshine and ice cream – it’s hard.  Write a post that delves into the 3 challenges that you face as a Health Activist

This is a really interesting post, one, which really makes us, reflects upon our role – probably not something that we really think about.

 

One challenge that I particularly face, especially when one considers it is a rare condition – is simply by trying to find an audience for my blog.  Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself.  As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

 

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease.  But still the question remains whether my blog is helping and making a difference to others.  Do I have something of value to add and share with whole health community?

 

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell.  A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity.  Us health activists need to attempt to learn to balance our lives – health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

 

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well that it is not always the reality.  And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful.   Some examples of things NOT to say to a person with an invisible chronic condition are:

  • “It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
  • “It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
  • “You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating.  For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others.  For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
  • “Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is

And there are many more!!  Can you think of others that people say to you which are not helpful?  Please share them with us and perhaps I can do a follow-up piece on the topic!