The end is here….

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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 final prompt reads as follows:

You did it!…You’ve crossed the #HAWMC finish line.  Recap the past month for us.  What did you enjoy, what didn’t you enjoy?  Favourite prompt?

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Well, I have made it!!  I have managed to write ALL 30 posts in 30 days!  And what a journey it has been – one full of ups and downs.  Celebration of triumphs over certain neurological symptoms in the post ‘I went and I conquered!‘ and reflecting on the tough times as a result of chronic illness in posts such as ‘Dear Rhiann (at age 16)‘ and ‘Escaping the monotony and boredom of chronic illness…‘.  Some posts were deeply personal and regarding my own life and experience with chronic such as the letter to my younger self, ‘Reflection of a life with illness…‘ and ‘Lesson Learned! Don’t walk down the stairs with trembling legs…‘ whilst other posts explored what is it like to live with a chronic illness in general in posts such as ‘Clichés often heard when dealing with chronic illness…‘, ‘The representation of chronic illness on TV…‘ and ‘Rules for dating a Spoonie…‘.

Although there were a lot of difficult aspects of completing such a monumental task such as writing everyday for 30 days, it has been a challenge that I most enjoyed.  The challenge allowed me the opportunity to focus on something other than on my symptoms and feeling unwell; it gave me focus and also gave me a purpose.  Another aspect of  the challenge that I also enjoyed was the opportunity to connect with other bloggers and learn more about their lives and experiences with chronic illness.  Although many of the blogs that I read or have read during the course of this writing challenge are about all different types of chronic conditions, it is surprising therefore reading others’ experiences and thoughts regarding living with chronic illness and seeing my own reflected in their words.  It shows that we don’t have to find other people with the same diagnosis to find support and a connection with other patients.  I have particularly enjoyed reading the wonderful and eloquent writing of Jessica Gimeno on her lovely and inspiring blog ‘Fashionably Ill: The Sick Woman’s Stylist‘.  I have also had the pleasure to meet a new blogger named Kerry Wong who has a wonderfully positive and inspiring blog named ‘Float Like a Buttahfly‘ and finally I have discovered a very informative and interesting blog about living with an Autistic Spectrum Disorder at ‘What’s the ASDeal?

I didn’t dislike any part of the challenge, however there were aspects of the month that were incredibly difficult, such as dealing with severe symptoms whilst needing to write posts.  Not easy when living with fatigue and you are constantly tired.  To help this, I planned the posts ahead of time, which came as a real help especially as some days I was unable to get out of bed due to the severe weakness in my legs and as the posts for those days were already written I was just able to proofread them and then hit the publish button from the comfort from my bed.  In addition, some of the posts were also similar or even exactly the same as prompts from previous years of the Health Activist Writer’s Month Challenge.  An example of  such a prompt is the ‘5 Challenges and 5 Small Victories‘ and the reasons for why we write.  It was therefore difficult to find new ways of answering these particular prompts without repeating what I have written before.

I have to admit that I am not able to choose a favourite post as I enjoyed writing them all.  The one post that did get the most traffic though was ‘Clichés often heard when dealing with chronic illness‘ so perhaps that was the readers favourite post.  I did particularly enjoy the prompt that asked us to write an acceptance speech – I really liked writing the post as it allowed me to thank everyone who has supported me and helped me during my journey from diagnosis of the neurological condition to where I am now.  I even showed this post to my Mum whom I mentioned in the acceptance speech, and she even teared up a little so it must have been well written and a wonderful post.  Which post from the last 30 days were your favourite?  I would love to hear your thoughts on the whole challenge!  Please feel free to add any comments, messages or suggestions below…

Wordless Wednesday: Hope exists even in darkness…

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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:

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

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Make plans…our bodies laugh

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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:

Summer Lovin’…Summer is coming up.  What plans do you have?  Any family vacation?  What do you look forward to in Summer 2014?

I have to admit that I currently have no plans for the Summer of 2014.  Why is this?  For starters, in my opinion making long-term plans whilst living with a neurological condition or chronic illness like myself, can be extremely difficult.  It can be extremely difficult because everyday is an unknown.  We do not know what each day will bring; how severe the symptoms associated with our condition and how we will feel from one day to the next.  Sometimes especially when experiencing a bad flare in our conditions, we do not know how we will feel one minute from the next even, and so therefore making plans can often be problematic as there is always the worry that we will need to cancel.  And cancelling plans not only disappoints those with whom we have made those plans with, but also leads to disappointment for ourselves.  You know that phrase “We plan, and God laughs” – never has a saying been so true for life with chronic illness, except that it is our bodies that laugh and not God.

"People plan and God laughs" or the Spoonie equivalent is "We plan and our bodies laugh!"

“People plan and God laughs” or the Spoonie equivalent is “We plan and our bodies laugh!”

By the time that Summer arrives of course, I would have already have been on my holiday.  The first holiday in fact that I have had for several years.  At this very moment, I am a mixture of being very excited but also very nervous.  Living with my neurological condition can be very difficult, and therefore I realise that going on holiday may at times be very difficult due to my symptoms such as dizziness.  However, as I am going on a cruise, it has a variety of benefits, such as being able to set the pace for the holiday itself.  I can be as active or passive as I want; and in addition if I suddenly become unwell, I can simply head straight back to our cabin without the hassle of travelling back to a hotel from the beach or from somewhere further afield.  Also, being on a cruise ship could also lead to more independence away from my parents as I can (with hope) wheel myself around to areas of the ship where the activities that I want to take part in are held.  For example, I have learnt that often cruise liners hold art and craft sessions, such as lessons in jewellery making or scrapbooking and so as I have found art and crafts to be useful in distracting myself from symptoms such as dizziness and chronic pain and so therefore may be beneficial for me to attend such onboard activities.

I also know that it may take a while to recover from the cruise and from all of the added activity that comes from being on holiday.  The start of the Summer therefore may be recovering from the holiday.  Unfortunately, the Summer may also see more hospital appointments as am waiting for an MRI to be conducted before seeing my consultant again.

Although I don’t have definite plans for this Summer, I do hope however for more lovely, relaxing and fun days out with my carer and enjoy the most of the warm weather.  Day outs to nearby tourist attractions, days out shopping or simply a trip to our favourite coffee shop, I don’t really mind as long as the Summer isn’t spent in my house with only my symptoms for company.

Dear Rhiann (at age 16)…

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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:

Dear 16-year-old-me….Write a letter to yourself at age 16.  What would you tell yourself?  What would you make your younger self aware of?

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This particular post is one which is both extremely personal and difficult to write.  Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time.   As you can imagine was not a very happy time for me at all.  Now, I look back at that time in my life,  I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life.  And, so there are so many lessons that I would share to my 16 year-old self, given the chance.  Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014.  I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit.  So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime.  That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp.  The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.

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I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen.  Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full.  I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch.  But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing?  It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe.  Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it.  So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder.  Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and  “they know what they are talking about”.   One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes.  Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness.  Please keep fighting for answers.   And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come.  Trust me.

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I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need.  I remember at sixteen being teased and ridiculed for who you  are– just remember that no-one has a right to make you feel that you need to apologise for who you are.  Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued.  It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget  – the heaviness and stiffness that you feel in your legs?  The feelings that have been with you, since you can remember?  Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great.  You probably won’t believe it, but you will.  Stop doubting yourself.  Next stop will be your A-Levels, and then who know maybe even to University  ;-)

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.

From

Rhiann (aged 28)

Are neurological conditions in fiction ‘Left Neglected’?

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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:

Book report…What’s your favourite book and how can you tie it to your health or life?

For someone who is an avid reader, it is very difficult to choose one favourite book!  I am regularly discovering new authors who has written amazing and enjoyable reads that are both thought-provoking and compelling.  However, what does link many of my favourite authors and their books are the lack of characters who I am able to relate to in relation to life with a neurological condition.

Previously, I have written a post regarding the lack of credible and authentic portrayals of neurological conditions and other chronic illnesses within television.  Unfortunately, the same could be said regarding fiction, as there is a lack of novels featuring accurate representations of life with a neurological condition, or even chronic illnesses.  Perhaps, a reason for this is people want to read books for escapism, instead of reading a book about the often gritty realism of what it is to live with a long-term health condition, or perhaps it is the preference for a story that encompasses the hope of recovery and which depicts triumph over adversity.

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One book that I recently read and thoroughly enjoyed, however, did portray one character’s battle with a neurological condition. The condition portrayed in the book, was not in any way similar to that of my own condition but I did relate to the character’s frustration and certain parts of her journey depicted in the story.  The book is by a fantastic author named Lisa Genova.  Lisa herself has a PhD in Neuroscience and could be argued the reason why Lisa is able to intertwine realistic and accurate portrayals of neurological conditions, with not just accurate information regarding the condition itself but also the emotional toll that it can have on both the patient and caregivers.  The book that I particularly enjoyed of hers is ‘Left Neglected‘ a story of a high-powered career woman Sarah Nickerson who is left with a brain injury after a car accident.  The injury is to the right hemisphere of her brain, which as a result leaves her with a ‘left neglect’ or ‘hemispatial neglect’, in which the brain forgets and ignores information on the left side of her body, and also the left side of her entire world.  For example, after the accident, when her husband is stood by the left side of her, as her brain is unable to interpret or process the information Sarah is unable to see him; Sarah is also unable to feel anything on the left side of her body and therefore has to undergo physiotherapy in the attempt to learn how to walk  and generally recover from the traumatic brain injury.

Obviously, there  are many differences between the neurological condition that I live with and that of the character in the novel.  For instance, the condition in which I live with is not a result of a traumatic brain injury, and in addition mine is one in which is life-long and no chance of recovery, where as in the novel through hard-work, determination and the aid of physiotherapy, recovery can be a possibility.  The symptoms of the conditions are also extremely different – in the novel, the character Sarah has to learn and re-teach her brain to acknowledge the left side of the world and her body.  In my everyday life, however I have to contend with constant dizziness, vertigo, trembling and weakness in legs as well as battling fatigue and nausea.

However, as much as there are extreme differences between my situation and that of the main protagonist in the novel, I did find myself relating to the book and that of the experiences of Sarah.  As a high-powered career woman, Sarah was not the type of person to sit around, and therefore the novel excellently explore the frustration of suddenly being unable to do the simplest task for yourself.  On the days where the severity of the weakness and trembling in the leg leaves me unable to get out of bed and so I feel the same frustrations of not just being stuck where I am and unable to do anything for myself, but also the frustration of not being able to do the things you love.  Furthermore, I could really relate to the frustrations of the lack of progress in physiotherapy and the temptation to push yourself before you and your body are ready, leaving to a great many accidents which I have also experienced during my time in physiotherapy and whilst at home.  Very often, when our bodies are at our weakest we adopt a “win” attitude.  By which I mean, we attempt to defy the weaknesses and challenges of our conditions and attempt to ‘run before we can walk’.  And by reading the book, it seems that both myself and Sarah have learnt that instead of trying to ‘win’ and suffering setbacks in the process, such as suffering falls and other accidents, we should instead accept the limitations that our conditions poses and adjust our lives accordingly.

The one thing that I loved and really took away from the book is how that despite limitations and various disabilities does not mean the end of doing what we love; that we can find different ways of doing things or taking part in activities which we never thought possible.  In the book, for example Sarah goes on a vacation with her family and before the accident she loved snowboarding on the slopes where they stay.  It’s at this point that she imagines that she will never be able to snowboard again, however after visiting a shop designed for those with disabilities she found that she may not be able to do like she did before the accident but there are ways in which she can still participate.  It’s this lesson that I have learnt for myself, and one which I am constantly learning as I am finding new ways of adjusting to the challenges that my condition presents.

My life and health in a ‘Word Cloud’

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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:

Word Cloud…Make a word cloud or tree with list of words that come to mind  when you think about your blog, health, or interests.  Use a thesaurus to make the branches of your “tree” extended further.

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This is the Word Cloud that I have created.  It contains words that are related to my condition, the challenges and problems that the condition has placed upon my life, and other words that relates to health and living with a chronic illness.  It also contains words that have helped me through my darkest days living with a neurological condition – the social media platforms and the people that have supported me, the friends I have made along the way.

Exercise: Taking back control from symptoms…

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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:

Fitness Friday…What do you do to stay fit?  Tell us about your efforts in maintaining a healthy lifestyle

Living with a chronic illness can often mean that you are not in control over a number of different aspects in your life.  More often than that not, your life is controlled by the symptoms associated with your condition.  For example, on the days where the weakness and trembling in my legs is very bad then I am unable to get out of bed because I can hardly stand or walk.  Therefore, my life is being controlled by symptoms because my ability to do certain tasks is dependant on the severity of the trembling and weakness in my legs.  However, an aspect of our lives that we do have control over is our personal fitness and general health. Taking part in regular exercise and eating healthy are things that are in our control.

It took me a long while, however, to find exercise that suited my abilities and symptoms due to my neurological condition.  Due to the pain, weakness and trembling in the legs I am unable to take part in activities such as running, or going to the gym.  Furthermore, my hand and eye coordination is also affected and therefore, I am not suited to be able to take part in sports which require good hand and eye coordination.  In the past, I have tried pilates and yoga but as the balance problems associated with the neurological condition I live with, I eventually had to give it up due to the falls I was experiencing when taking part in these exercise regimes.  There was also the Wii Fit, that my parents and I bought together for Christmas one year, but as the balance problems causes a swaying motion when standing, the Wii Fit board would no longer register me, as it would constantly tell me to stand still, which I was doing to the best of my ability!

Then the perfect solution found me whilst watching QVC on television (well, Mum had it on much to my dismay!).  The special value item for that day was an AeroPilates machine.  Aeropilates is a machine that incorporates basic Pilates movements whilst supporting the spine, joints and muscles of the body and uses resistance to strengthen muscles that are weak and lengthen muscles which are tight.  The machine has a bed as all the exercises require either sitting or lying down.   Therefore, this form of exercise is perfect for me as it is an exercise that I can still do even when my legs are weak as it requires either lying or sitting and in addition I do not have the worry of suffering a fall and injuring myself.  Furthermore, this form of exercise also concentrates on areas that I need to work on to prevent further deterioration of symptoms as the resistance training is designed to strengthen and tighten muscles which are weak and tight, which mine are due to the spastic paraparesis.  The machine can also be used as a rebounding machine by which the body moves back and forth thereby elevating your heart rate and providing an excellent cardiovascular workout.  It is a great machine, especially for those with problems similar to mine.  To find out more about this form of exercise, then watch this great video by Marjolein Brugman who developed the machine and form of exercise:

More recently, I have also started going to a place nearby to where I live called ‘The FeelGood Factory‘.  This is not a conventional gym, but they instead provide power assisted toning equipment.  These pieces of equipment (there are 12 pieces of equipment in total) facilitates both passive and active exercise and as a result can be used by anyone regardless of age, mobility, weight or fitness level.  Furthermore, they are even suitable for those with medical conditions such as MS, fibromyalgia, ME and arthritis.  The circuit of machines exercises all the major muscle groups in the body, and you can expect results whether you actively use the machines or allow the machines to work your body.   To find more about this particular form of exercise then watch the film below:

Not only does The FeelGood Factory provides a relaxing and safe workout but it is a lovely place to go with a lot of lovely and friendly faces and you are always guaranteed interesting conversations.  I go approximately twice a week and me and my carer always look forward to going and seeing everyone we have had the pleasure of meeting there.   If you suffer from a chronic illness and live near Llantrisant then I cannot recommend this enough and I have seen great results even after two months with various parts of my body feeling toned.  It has also given me psychological benefits as I feel more relaxed, happy and even confident since I first started attending The FeelGood Factory.

There are other FeelGood Factories around the UK, to see if there is one near you then visit the Shapemaster website here.

In addition to exercising as regularly as possible, I of course take control over what goes in my body by maintaining a healthy and balanced diet, which is just as important as exercise for maintaining a healthy lifestyle.  Of course, I still enjoy chocolate on occasion, but I do tend to avoid junk food and instead eat a balanced and sensible diet.