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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

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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!

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Pleased to announce….

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I received a very surprising reply to a post this week, and found that the lovely ladies over at ‘Below the Radar’ have nominated me for the Very Inspiring Blogger Award!  I was overwhelmed and would like the opportunity to say a big THANK YOU to them for even thinking of the blog when nominating other blogs.  It really is a honour to be even nominated, and would love to officially accept the award.

To Go or Not To Go… My Brain Lesion and Me

The official rules of acceptance are as follows:

  • Display the Award Certificate on your website (see below) 
  • Announce your win with a post and a link to whoever presented you with the award
  • Present 15 awards to deserving bloggers
  • Drop them a comment to tip them off after you have linked them to your post
  • Post 7 interesting things about yourself (may be difficult in my case!)

 

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Seven interesting facts about me (or just facts!)

  1. I love musicals and recently went to the cinema (for the first time in some years) to watch Les Misèrables – I absolutely fell in love with the film and instantly downloaded the soundtrack (and later bought the Deluxe Edition with all the songs) which I have played a lot since buying the album 
  2. I have recently fallen in love with making decopauge cards and have even sold several cards at my social group.  I find it so relaxing and really takes my mind off my pain in my legs and the dizziness.  It is my number one therapy at the moment
  3. I am a gadget nut – I have a smartphone, tablet computer, e-reader as well as my desktop computer!  I can easily navigate my way around a new gadget, even setting it up all by myself.  If anything goes wrong with a gadget, it is usually me who solves the problem in my house
  4. To earn my Psychology degree I had to create, complete and write a research project.  I chose to complete a study looking at the stigma of mental illness.  The results were quite shocking and found that there the stigma of mental illness is still strife, especially if the person is perceived to be at fault for their mental illness.  The results were even of interest to the university’s student union, and helped them form a campaign to tackle the problem of stigma of the mentally ill.
  5. I am the current secretary of my local social group ‘Life 4 Living Pontypridd’, and am an active member of a similar group in another area close to where I live.  I am even in the process of starting my own group specifically for younger persons with disabilities
  6. I am a quiz addict!  I love watching quiz shows on television (my favourite being Pointless on BBC1) and love participating in quizzes – even getting quite competitive in the process!  They have even tried banning me from taking part in the quiz at ‘Life 4 Living’ as am constantly shouting out the answers before anyone else gets the chance!
  7. A lot of people are surprised to learn that I have never learned to ride a bike.  This is probably due to my problems with my balance, which was not diagnosed until later in life.  I tried when I was younger but always found it so difficult.

Now, for the nominations… Each of these blogs are ones in which I follow a lot, and the bloggers are all truly inspirational and I feel that they all deserved to be recognised for the inspiration that they provide for me and everyone else who has been touched by their words.  Here we go…

 

Chronicles of a Dystonia Muse

Abledis

Peachy Pains 

Girl with the Cane

Hope Whispers 

The Patient Patient 

The Unseen Mag Blog

Despite Lupus 

Make this Look Awesome 

Let’s Feel Better 

Hidden Courage 

Pajama Daze 

A Chronic Dose

Licking the Honey 

Chronically Creative 

 

Congratulations to all!

 

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To Go or Not To Go…

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Many of us living with chronic illnesses know that often it can rob us of our dreams and aspirations – often assuming that what we used to dream of achieving is no longer within our grasp.  However, this is often not the truth – what may be out of our grasp is the most conventional route of achieving a particular dream; but often when living with a chronic illness, we need to find another route to be able to achieve our dream.

A dream of mine has always been to visit the beautiful country of Italy.  In fact it is on my ‘Bucket List’ that we have complied at my social group which I attend. However, due to my problems with dizziness and vertigo, particularly affected by high ceilings  flying there would not be a good option for me as the majority of airports are very large and have high ceilings – using this transport option would mean that I would be extremely unwell even before getting to the desired destination!

 

Airports - large and high. My idea of a nightmare!
Airports – large and high. My idea of a nightmare!

 

Another option would be travelling by a coach; which is one option in which my Mother and I were considering.  However, this was quickly dismissed after a recent trip to the cinema in which I was left in bad pain within my legs due to the cramped conditions, and therefore thought that travelling via coach for many hours would most likely result in severe pain.

Coaches don't offer a lot of leg room - and for me would leave me in pain
Coaches don’t offer a lot of leg room – and for me would leave me in pain

 

Therefore, the only option left to me is a cruise.  My parents went on one a couple of years ago and loved it – really could not recommend it enough.  Although it is only really my last option left to be able to visit Italy; there are however a lot to think about.  Such as the constant dizziness and balance problems.  Would going on a cruise possibly increase the severity of the dizziness, vertigo and balance issues.  People with vestibular disorders often have super sensitive balance – and although cruises have stabilisers and ‘healthy’ people report not feeling the motion of the cruise ship; a person with a vestibular however may feel the motion and be affected because of it.  On the other hand, my balance and dizziness are a result of a neurological disorder and therefore it is interesting to consider whether I would be affected by a cruise in the same way a person with a vestibular disorder would.

A Cruise - good or bad thing with a condition like mine?
A Cruise – good or bad thing with a condition like mine?

 

There are a lot of advantages of cruising for a person with a chronic illness; which really do appeal to me:

  • Cruise liners and the companies running them are very happy to accommodate for those with disabilities and chronic illnesses – if you tell them in advance what you need then they will happy to accommodate your specific requirements.  Or if they cannot themselves they will signpost you to places where you will be able to rent certain mobility aids, etc 
  • If like me, you are unable to determine when you will become unwell; symptoms appear with no warning then on a cruise you can simply head back to the cabin to have rest or a nap.  If you were on a conventional holiday and out on an excursion you would not be able to do so
  • With mobility problems like myself; cruise ships have plenty of elevators that you can use, and if you suddenly get tired, there are plenty of lounges, bars, restaurants or seats that you can plop yourself down on to take a break
  • When the cruise liner has reached a particular destination and has docked, if you are not up to go sight-seeing then you do not have to – you can just stay on the ship and relax!
  • Plenty to do and lots going on!  I personally like to be entertained and if I am up to it like lots to do – and cruises offer that.  Amenities often include theatres, cinema, spas, swimming pools, ice rinks, and lots more!

I am yet undecided whether I will eventually go on a cruise; there are many factors to consider, and my health being the biggest factor to consider.  Would a cruise be a good fit for a condition like mine?  One thing though, I would love something to really look forward to and be excited about – my future currently offers me more hospital appointments and the same old routine!

What are your thoughts?  Do you suffer with a chronic illness and like to travel?  What, in your opinion are the best types of holidays for those with chronic illness?  Any more advantages of a cruise?  Its disadvantages?

Please leave comments – would love to know your thoughts as ever!

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#spooniebookclub Review: ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties’ by Laurie Edwards

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I am very excited for the first #spooniebookclub which is to be held tomorrow night at 8 P.M. (GMT) over on Twitter.  The first book that was chosen was one which we will all would relate to – a book which examines what it is like to live with a chronic illness – and as we were all under the age of 30 – this book seemed to be the perfect fit for us all.

Interestingly, after a discussion with a fellow book group member; we both felt that the writing style of the author felt rushed and forced as if she was merely writing down her thoughts as they came to her.  However, what if we were to look at it differently – as patients, we often have to wait a long time for answers; to get a diagnosis, wait for appointments.  So, isn’t it refreshing for a book about chronic illness to get straight to the point; to be concise and compact.  Each chapter is short, making it very easy to read little chunks when the reader feels up to it.  Fantastic for those like me who tire very easily but still like to read before going to bed.

The book I found was very relatable and encompasses the chronic illness experience beautifully – the author cleverly also uses several other patients and their personal experiences of living with chronic illness; each with a variety of different conditions.  In my opinion, this was a very smart move, as the range of conditions which can be considered as ‘chronic’ is large, and by including a variety of different conditions, the books feel even more relatable – if you are not able to relate to one person for a reason, then there will be another person included that you may relate your experience to.

The book encompasses everything that a person living with a chronic illness in their twenties and thirties are likely to experience in their life – leaving college or university and starting the path to their chosen career; making and maintaining friendships; starting romantic relationships and sustaining them, as well as the experience of chronic illness – hospitalisations, the patient experience both in hospital and in the ‘real world’.  Much of the book, I found reflected on life in the hospital – and as a someone with a chronic illness that does not require frequent hospitalisations, I felt that it somehow didn’t apply to my experience of illness.  However, the author does describe how ‘one of the only predictable things about chronic illness is its unpredictability‘; which I feel captures my experience of chronic illness beautifully – I never know how I am going to feel hour by hour, or day by day; and furthermore find planning activities and social gatherings very difficult as I never know if I will be able to attend, and if I do, often need to cancel such plans as I feel to unwell to go anywhere.

The only problem that I found with the book, is the obvious differences between the healthcare system between the UK and US.  Some of the book talks about the major financial implications that chronic illness causes; something which thankfully, we living in the United Kingdom have to worry about.  However, in contrast to this, the author also describes the relationships and contact with her medical team – often with patients being able to email or have easier contact when needed – which unfortunately does not encapsulate the experience with doctors or nurses here in the UK – instead my experiences have been one of long waiting times to see a medical practitioner, and having the hardest time to speak to a doctor even on the phone when things have become bad.

Overall, the book is very well written, and with the concise and compact chapters, makes it very easy to read in small chunks.  Reading it, I found some of my own experiences being fed back to me, as if ‘finally, someone understands exactly what I go through’.  The book was very easy to read, and managed to read the entire book in only a couple of days and really delves into the experiences of chronic illness that matter most in your twenties and thirties.

 

Has anyone else read the book?  What were your thoughts of the book?  You can share them here or on the ‘Spoonie Book Club’ Page which you can access on the top of the page.  Or you can even join us on Twitter at 8 P.M. (GMT) to discuss the book using the hashtag #spooniebookclub.

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