A Year in Review: Living with a neurological condition…

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Now the Christmas and New Year celebrations are upon us; it also allows us the opportunity to reflect on the year that is nearly at an end, and to also look forward to the year ahead.

This time of year, allows us to not only reflect on the difficulties and struggles that have occurred due to chronic illness, but we can also reflect on what the year has brought us and express gratitude for the positive moments or for the people who have supported us and made life with chronic illness a little easier.

Every person; whatever their situation and whatever struggles they live with, every year brings many ups and downs.  And living with chronic illness brings more downs than ups, but still we are able to find gratitude in all the positives that happen during the year.  An example, of such a positive thing that has happened to me during 2013 is finding such a strong support network, especially on social networks such as Twitter.  This year has seen me find many special and caring friends that make living with my neurological condition a little easier – they pick me up when I am down or struggling, and send me messages of congratulations on the successes.  This year, through all the bad times, I am grateful for friends such as Anya and Aisha for all of their friendship and support, and of course all of the other wonderful spoonies who have messaged me support throughout the year, for which there are many – thank you!

Again, this year has also seen me gain another nomination for a WEGO Health  Award; so for the bottom of my heart I would like to thank the person who nominated me for the award – I am truly honoured.

I also have to be so thankful for everyone who has taken the time to read, liked, shared and commented on my many blog posts throughout the year.  I have shared much of my life and experiences of living with a neurological condition, and so I am grateful for everyone who takes the time to read, and perhaps even take something out of it, such as a little more compassion or understanding of those living with chronic conditions.  During the coming year, however I would like to connect with even more people living with and experiencing chronic illness, so please feel free to get in touch whether it be by email, Facebook or Twitter and share your story and experiences.

There were however, many downs also.  The symptoms that I experience such as the dizziness, trembling in the legs and the pain have all increased and worsened exponentially compared to when they first started.  In addition, the days where I am unable to get out of bed because of the weakness, pain or dizziness (sometimes all of the above!) have also increased.  This year has also seen the increased use of my wheelchair; last year, I only used the wheelchair on very rare occasions.  However, as the symptoms have become worse, with the trembling and weakness in the legs becoming such a problem, that the wheelchair is used at least once a week if out for long periods such as the days out with my carer, going to the social group that I attend and hospital appointments, and so on.  In addition, with all the dips that have occurred, depression, have also reared its ugly head at times making the journey through chronic illness even harder.

Me in my wheelchair that is now a regular part of my life this year
Me in my wheelchair that is now a regular part of my life this year

But now, as the year is drawing to a close, it is time to start looking forward and to the possibilities that the mew year has to offer.  The beginning of the year for me involves three hospital appointments for an introduction to a Neurophysiotherapist as well as tests to help narrow down the cause of the dizziness – so here’s hoping for more answers and an effective treatment plan! And next year I also have a cruise around the Mediterranean to look forward to in May.  And perhaps I will discover new and beautiful places to discover with my carer, although for me nothing could top ‘The Potting Shed‘ in Llantrisant.

HAWMC 2013 Day 8: When you hear hoofbeats; think Okapi and not horses!!

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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:

If your health condition (or the health condition of a loved one) was an animal, what would it be?  Is it a real animal or make-believe? 

If my health condition were an animal , I would compare it to the Okapi.  A real animal that is closely related to the giraffe, and which resides in the Ituri Rainforest, in the northeast region of the Democratic Republic of the Congo.  It is thought that there are only 10 to 20 thousand still living in the wild, and therefore the sight of one is rather rare since they are close to being endangered.

The Okapi
The Okapi

I have chosen the Okapi as a metaphorical representation of my condition, as like the Okapi, my condition is also rather unique and rare.

Often, with doctors when they hear symptoms, they often “think horses, not zebras.”  Perhaps this is the reason for many misdiagnoses, and waiting, often for years for the correct diagnosis when dealing with rare or unusual conditions.  Doctors assume the symptoms are the result of a more common illness or disorder; such as when people assume hoofbeats are caused by horses, and not zebras.  Therefore, when considering an animal as a representation of my condition, it has to be one which is rare and unusual, and one in which others are not likely to consider.

Furthermore, as a result of my condition, the symptoms that I experience, such as the dizziness and vertigo, can also be found in many different conditions as well as my own.  The Okapi, is very often said to reminisce with another animal also – the markings that it has, bares similar similarities to that of the zebra, and therefore often mistaken to related to it, although the Okapi is said to be closely related to the giraffe.

What would I name the animal?  For this I would have to go for ‘Bambi’ – yes, I know Bambi is famously a deer, but with the weakness in my legs, and the problems with the balance, I do look like Bambi a lot of the time.  Imagine in the film when Bambi is trying to get up and walk – that is very much like me when my legs are weak; often unable to support me, and so legs collapsing just like Bambi’s is a regular occurrence for me!

My own ‘Okapi’ then would be extremely clumsy and off-balance to represent the weakness in my limbs; and would sleep for hours on end because of extreme fatigue.  However, the ‘Okapi’ would also show strength and stubbornness as like with everyone battling chronic illness both of these traits are needed to get through each and every day.

So, next time you hear hoofbeats, think of the Okapi and not horses!

If your condition was an animal, what animal would you choose?  Have fun with it; and let me know!  Comment below!

HAWMC 2013 Day 5: My Future Aspirations as a Health Activist

 

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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:

“If I could do anything as a Health Activist…” 

Think big today!  Money/time/physical limitations are no longer an issue.  What is your biggest goal that is now possible? 

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At the moment, as some of you may be aware, I attend a couple of social groups twice a week.  These are open to everyone whether or not they have a chronic illness or not.  The majority of the people who currently attend are middle-aged, and am by far the youngest person there!  However, I do not mind this, and thoroughly enjoy the company when I attend the groups.

However, if there were no limitations placed upon my life, especially, the limitations that my illness places upon me, I would love to start a group specifically for younger people with chronic illness or disabilities; this will not only allow me to start a group that would support others that may experience problems associated with illness and disability such as isolation and loneliness but will also allow myself to meet others who are closer to my age.

This group would not only allow the opportunity to meet up and talk to others but I would also aim to apply for funding for trips to local sights and other amenities.  In my own experiences, my illness and disability has isolated me from my peers, and have often kept me inside of the house, unable to go to places which may be of interest to me.  So, allowing the opportunity to go on trips will break the isolation for myself and many others.

It has also been an idea of mine for some time, to also start a regular support group for people with dizziness problems like mine.  Many people in my life, as best as they can, try to understand what it is to live with constant dizziness, but as we all know, it is very difficult to understand something that you have never experienced.  So, it would be great to meet others, that are also living with dizziness for support and understanding, as well as gaining tips and coping strategies from each other!

And if money was of no issue, perhaps setting up a charity for those living with neurological conditions; a charity that aims to provide support and resources for a wide variety of neurological conditions that may not be covered by other specific neurological charities (such as MS Society UK).  Living with the condition like I have, a long-standing brain stem lesion, I have found that it is extremely difficult to find a group or charity that fits my specific diagnosis, and therefore, it can even be more isolating as I have no idea which charity or organisation I can turn to for support and guidance.  Wouldn’t it be great, therefore, to have a large general neurological based charity that can give advice, help with resources and support for anyone living with a brain condition – a place where anyone living with a neurological condition can belong.

It would be great to leave a long-lasting legacy after I am no longer here….

HAWMC 2013 Day 3: Wordless Wednesdays

 

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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:

Post a picture that symbolises your condition and your experiences 

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Taken from: Matt Lassen Cartoons: Word of the Day  – May 28 2011

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!

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

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?