Wordless Wednesday: The way you view your self is the more important than how others see you…

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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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Finding hobbies and interests in the midst of illness and incapacitation…

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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:

Hobbies…We at WEGO Health love hobbies.  Tell us, what are YOUR hobbies?  Are you a rock collector?  Scrapbooking?  Photography?  Dancer?  Share your talents.  (Pictures encouraged!)

Battling fatigue, dizziness, trembling and weakness in the legs can make it extremely difficult to take part in hobbies.  That it not to say I do not have any hobbies.  One of my loves is reading; ever since I was a child I was a bookworm and loved reading fiction books that will transport me to different places and times.  Or books just to escape from the reality of pain, dizziness and depression.  The love of reading, fortunately has not left me and I am a proud owner of a large number of books.  Those who know me, will already know that my favourite author is Jodi Picoult.  I have at least two shelves in my bedroom dedicated just to her books.  I love her writing style; the fact that each chapter is narrated by a different character enabling the reader to consider both sides of an argument and allowing the reader to determine their own opinions on the subject matter at hand.  Each book is thought-provoking, deep and thoroughly researched.  In my opinion, my love of reading, especially my recent devouring of novels are a result of the weakness and trembling in my legs.  Due to the mobility problems that are a result of these particular symptoms mean that walking can be difficult, sometimes even I am unable to leave my bed because of them, and so it is in these moments that my love of books are a real blessing, as it a hobby that I can take part in bed or wherever I am stuck with my uncooperative legs.

Another hobby of mine is collecting butterflies.  As a lot of my followers and readers of the blog will know that I am a big lover of butterflies.  In my opinion, butterflies are beautiful; the bright and colourful colours of their wings, but also they are a sign of hope.  The hope that something beautiful can come from the end of an old life.  For someone with a chronic illness like myself, it really symbolises hope that despite being diagnosed with a long-term health condition it is not the end and something positive can still be found.  This is beautifully summed up by  the proverb “Just when the caterpillar thought the world was over, it became a butterfly”.  I have a piece of artwork which encompasses this very proverb within the piece.  It’s a lovely piece of artwork and I have near it my bed as a positive reminder that good things will still happen despite having a chronic illness.

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In addition to the piece of artwork, butterflies can be found everywhere in my bedroom!  A butterfly clip on my curtains, a photo frame adorned with them and even on my wallpaper!  I have just recently bought some butterfly LED lights to hang around my headboard.  The lights are pretty and colourful and make a bad day a little better.  As a symbol of hope and change, in my opinion butterflies are a perfect addition to be included in my own personal and private sanctuary.  A sanctuary in which I can recuperate on my bad days, and just get away from everything.  It’s a room which I spend a lot of time, so to make it as lovely and positive as possible is in my opinion very important.

Another hobby of mine, which I have been unable to do for a while because of trembling in my hands is card making.  I love making intricate decopauge cards.  It not only is it fun but doing them takes my mind off my pain and the dizziness that greatly affects my daily life. Again it is something that I have found to do despite my condition and one which I am still able to do even when my legs are too weak that I cannot stand or walk.  I am still able to drag to a table and chair and make cards despite the severe weakness and trembling. I like making them for friends and family for special occasions such as birthdays but I have also been asked to make them for others too.  It is a lovely hobby to create something both beautiful and special.  Here are some examples of the cards that I have made:

Reflection on a life with illness…

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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:

Reflection…This is a day to reflect.  For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted.  Reflect on your journey to this day, what are your thoughts and hopes for the future

I am writing this post whilst lying in bed.  It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed.  It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.

I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after.  That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after.  I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world.  Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness.  But that was the hand that I was dealt.

I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet.  Instead, I dreamt of going to university in order to establish a career for myself.  I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.

However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse.  As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms.  It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with.  That and long waiting lists to see consultants and for tests to be conducted.

Now, I have a definitive diagnosis.  It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work.  Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life.  Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others.  I am involved with a new community for those affected by neurological conditions called Neuro Nula  and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.

On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child.  The journey towards those dreams may look different  and may also take longer but they are still achievable.  This is summed up brilliantly by a quote that I came across on Twitter:

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(Soon to be) Leaving on a cruise ship…

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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:

Travel Time…If you could travel to anywhere in the world, where would you go?  Why?  We also know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

This particular prompt is a very interesting one for me, as in just over two weeks I myself will be going on holiday!  Yes, I am due to go on the first holiday I have had for a number of years.  The prospect is both very exciting and nerve-wracking.  This is the first holiday since my diagnosis of my neurological condition, and in addition is the first time I will be travelling since my symptoms have become worse, such as the mobility problems I live with as well as the worsening of the dizziness and vertigo.

My parents and I are going on a cruise with Royal Caribbean, sailing on one of their magnificent ships ‘Adventure of the Seas’ departing on May 8th.  The cruise is to travel around the Mediterranean visiting places such as Cadiz, Barcelona, Nice, Livorno and Rome.  I am particularly looking forward to visiting the places in Italy, as it is a country that I have wanted to visit.  I love Italian food, and think the language sounds beautiful.  It is a place full of history, a subject that I am interested in, and the architecture of its building are spectacular.

The beautiful cruise ship that I am about to depart on for my adventure around the Mediterreanean

The beautiful cruise ship that I am about to depart on for my adventure around the Mediterranean

I will admit that after I was diagnosed with the neurological condition, and since the symptoms that I constantly live with worsened I thought that I would never get to visit the sights in Italy that I had wanted to visit since I was young.  For example, I am unable to fly as due to my dizziness I would not be able to handle being in airports for a considerable amount of time because of their considerable size and high ceilings.  There are several local bus companies that do offer trips to Italy, however since the pain in my legs has worsened during the past couple of years, we ruled that option because of the likelihood that being in a bus for a long time without being able to stretch my legs would worsen the pain in them considerably.  So, the only option left was to go on a cruise.  At first, I was very skeptical as I was certainly worried that the dizziness would worsen due to the movement of the ship.  However, as both my parents have been on a cruise before, and eased by concerns and anxieties about cruising as well as listing off a large number of benefits of going on a cruise versus other types of holiday.  And by agreeing then I would be able to choose a cruise that would allow me to fulfil my dreams of visiting a place I had wanted to for so long.

The beautiful city of Rome which I will soon be experiencing

The beautiful city of Rome which I will soon be experiencing

After mulling it over, I agreed and took the plunge by booking the cruise we are to depart on in a couple of weeks.  The countdown now is most certainly on and I am busily preparing for the cruise and purchasing new clothes and bits and pieces that I need to take with me such as sunglasses, hats and other holiday necessities.  Another necessity that I have to take is my wheelchair; due to the neurological condition I am unable to walk far and therefore will need it to use on excursions and around the ship so I will be able to enjoy everything I want to experience.  Granted, I never dreamt that if I ever got to visit Italy I would do so in a wheelchair but sometimes dreams do not turn out the way that we expected.  I have decided to pack some items that are my personal necessity items such as my iPad – before leaving I will download some films that I will be able to watch on the days where I may be feeling very unwell and am stuck in our cabin due to the severity of my symptoms.  This may not happen, of course, but I thought I would prepare for the possibility that it could happen.  I am planning to watch a film or two on the journey to Southampton in order to distract myself from the pain and trembling in my legs that has worsened recently and may also worsen whilst travelling in the car due to the lack of leg room.  A notebook of course is another item that I will be taking with me; an item that will be very useful in taking notes for the blog post that I will be writing when I return home.  And of course, no holiday would be complete without a camera to document the experience of travelling to new places for posterity.  For this, I am planning to take as many photographs as possible with my smartphone, and then I am planning to build a scrapbook of my cruise experience as something to look back on when I am having a bad day due to chronic illness.

This particular prompt also asks for tips for others regarding travelling with a chronic illness.  However, as I have mentioned at the beginning of this post, I have not travelled since being diagnosed with a neurological condition, or not taken a holiday since the symptoms associated with my condition has worsened.  Therefore, I would like to make this particular post interactive and ask my readers (aka YOU!) for their tips regarding travelling whilst living with a chronic illness?  What are some of the items I should be packing in my luggage?  What are some of your coping techniques when your symptoms flare whilst travelling?  Any tips that you can offer would be much appreciated and would love to hear others’ experiences of cruising with a chronic illness or even better a neurological condition.  So, please leave any tips and suggestions in the comment section below:

I look forward to writing a post about my holiday of a lifetime and sharing my experiences and tips that I may have found whilst travelling with a neurological condition.

Lesson Learned! Don’t walk down the stairs with trembling legs…

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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:

Lesson Learned…What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make the same mistake again

There are many lessons that you learn when diagnosed with a chronic illness, such as acceptance is not about giving up and you are not defined by your diagnosis.  But it is not these big life lessons that you learn whilst living with a chronic illness but you learn everyday on how to live with your specific condition.  For example, I have learnt that in order to cope better with the dizziness that is a good idea to wear a hat, with a fisherman’s hat being the preferable choice, as it blocks out more visual stimuli than other styles.  I have also learned to tell when I need to use the wheelchair, or when I need to take a nap.  However, one lesson that I should have learnt a long time ago is one which I learned the hard way…

The style of hat that is most effective in lessening the severity of the dizziness

The style of hat that is most effective in lessening the severity of the dizziness

The lesson happened one night in late February, Mum and Dad had gone out to see a concert and so I was left home alone.  On that day, I remember it was one of my bad days, with the dizziness and the trembling in my legs particularly bad, and so before they left my Mum had done the washing-up as I was unable to stand for long.  And so they left me in front of the television with a packet of sweets; as my legs was so bad, I probably should have known just to stay lying on the sofa and find a film to watch.

But instead, I thought it was a good idea to walk upstairs to grab my Kindle as there was nothing to watch on the television and walk downstairs.  However, instead of walking down the stairs, I fell down them as I had suddenly lost all sensation in my legs (probably should not have wished for the trembling to stop!).  Fortunately, I was fine – a little shook up, but I hadn’t broken anything.  Well, I hadn’t broken any part of my body, but the Kindle that I was bringing downstairs?  That was indeed broken – the screen had cracked and so became completely unreadable.

The casualty from my tumble down the stairs...

The casualty from my tumble-down the stairs…

 

As an avid reader, this really upset me as it was one of my gadgets that I regularly use, and as I was saving towards the holiday I could not afford to replace it.

The story does have a happy ending however; after it happened I talked about the incident on social media, I think partly as I was on my own and still shook up about what happened and it was my way of having company, or at least some version of it.  A few days after it happened I was sent an email from an employee at Amazon UK who had heard about my fall via social media and the company was offering me a replacement Kindle free of charge!  It was an amazing act of generosity that I will never forget and I am now a happy owner of a new Kindle and reading books on it to my hearts’ content!

But a lesson that I learnt from the incident is when the weakness and trembling is as bad as it was that night, then to stay sitting or lying exactly where I am and not to exert my legs in doing more they can handle.  An important lesson but one which I learned the hard way! (And you will be happy to know that I no longer walk down the stairs holding my Kindle!)

A special thank you to Amazon too!!

What are some of the lessons you have learned during your life with chronic illness?  Are there any that you learned the hard way?  As ever would love to hear your thoughts and comments on the blog post, or the blog generally.  Please feel free to leave your comments below…

 

 

Recent 5 Challenges and Small Victories

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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:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -’I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

The representation of chronic illness on TV…

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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:

TV Matchup…Think of a TV show that compares to your life?  What is it?  Who would you be, who would your friends and family be?

In my opinion, this particular prompt is definitely the hardest.  I have spent all of yesterday, thinking of various television programmes and considering how it may compare to my life.  However, I really could not think of one.  I live with a neurological condition which is both unusual and rare.  I live with numerous symptoms, which are not typical of everyday life.  Unfortunately, there are not many television dramas that have characters with a neurological condition; there have been on various procedural dramas such as Grey’s Anatomy or House as examples but no long-standing characters from a television show that I can think of.  Furthermore, it could also be argued that as many portrayals of chronic illness are on medical shows set within a hospital environment is also in itself not representative of chronic illness as a whole, especially considering neurological conditions such as mine, which often does not require hospitalisations.

But then I thought about chronic illness in general.  It is my opinion that chronic illness is not well represented in television dramas generally.  Perhaps it is the programmes that I particularly watch, but in my experience the reality of living with a chronic illness is not represented accurately on television drama shows.  During the time when illness or injuries that could result in permanent disabilities these storylines are very short-lived; very often the person is diagnosed with the condition, starts treatment such as medication or physiotherapy and the character recovers, and the condition or injury is never mentioned again.  Alternatively, the character may even die from the condition.

 All of us living with chronic illness, are very much aware that this is not a true representation of what is to live with chronic illness.  Television dramas in terms of their portrayal of chronic illness suggests that chronic illness is not severe, or that its symptoms and its effects are short-lived.  However, the reality as we know is a lot different.  Does this media portrayal of chronic illness reinforce the stigma and disbelief towards those with chronic conditions?  Or perhaps, it is to show that those who live with chronic illness can still lead a normal life?

Susan Kennedy a regular on the television soap opera Neighbours who has been battling MS

Susan Kennedy a regular on the television soap opera Neighbours who has been battling MS

I remember watching ‘Neighbours‘ several years ago when one of its main characters Susan Kennedy, was exhibiting several neurological symptoms; many of which I experience or have experienced in the past.  For example, visual disturbances, dizziness, numbness in the limbs and extreme fatigue.  Susan was eventually diagnosed with multiple sclerosis; and in my opinion at the time this particular storyline was monumental in the increasing the public awareness and understanding of multiple sclerosis.  I cannot remember the exact length of the storyline in which she battled with multiple sclerosis, but unfortunately in my opinion there has not been an adequate continuation of the storyline. Although she has been seen suffering a recent relapse with her condition, her multiple sclerosis is seldom mentioned or its symptoms never seen affecting her life.  It seems that television dramas and particularly soap operas are unable to sustain a long storyline portraying life with chronic illness.

Cherylee Houston as Izzy Armstrong - the first disabled actress on the famous cobbles

Cherylee Houston as Izzy Armstrong – the first disabled actress on the famous cobbles

The British soap opera Coronation Street also introduced a main character, who also happens to be disabled and exhibiting an invisible chronic condition called Ehlers-Danlos Syndrome (EDS).  EDS are a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen.  The collagen in connective tissue helps tissue resist deformation, and generally collagen is an important factor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs.  Abnormal collagen therefore renders these structures more elastic and can lead to easy and excessive bruising, joint hypermobility (looser joints) and weakness of tissue to name but a few.  The actress who plays Izzy Armstrong, Cherylee Houston has the condition herself, and therefore the soap was praised for not only hiring their first disabled actress but also for raising awareness of this rare condition.  However, other sufferers have raised concerns of not adequately portraying the fatigue and pain that very often accompanies the condition.  Critics also state that the public profile of ehlers-danlos syndrome has not successfully raised the awareness of the condition as many people still reporting that they have not heard of the condition.  Is this another example for television dramas failing to follow-through in their portrayal of chronic illness?

Really think about the question: In which television series can you think of, in which one of the main characters is living with a chronic illness and it is accurately portrayed and is a continuing storyline within the show?

The answer is probably none.  Well, from none of the television dramas that I am familiar with anyhow.  Having chronic illness or disability in a soap opera such as Neighbours or Coronation Street can be argued is important in highlighting and raising awareness of a particular illness, however in my opinion it would be more beneficial to feature in weekly dramas as soap operas are an ensemble and features many storylines within each episode; many of which could become overlooked by the audience.  Characters are seen in the forefront of the drama for several weeks during their big storylines, but fade back into the background after the conclusion of the storyline to make room for the next big and exciting storyline.

I think that is why I have failed to find a television show that reflects my life.  Although my diagnosis does not define me it is however a large part of my life and a television show which compares to my life should therefore also reflect this part of my life.  Perhaps a new television show would need to be created to reflect my life with a neurological condition.

I did remember whilst in the middle of writing this prompt about comments others made during the period in which the doctors’ were still trying to find a diagnosis.  The doctors were puzzled regarding my symptoms and could not find a cause; as a result my friends would joke that I needed to go on House as he was a diagnostic genius!  Perhaps that is the show that I need to compare to my experience with a chronic illness; it certainly would have saved a lot of time trying to get a definitive diagnosis.  Maybe this could be a large project for the spoonie community as a whole – to pen a true and accurate portrayal of chronic illness for a television drama.  To raise awareness of such conditions and the effects that it has on our lives – perhaps with chronically ill people themselves penning such dramas, the public would gain a better understanding of those with such conditions and perhaps then there would be a more sympathetic approach towards individuals with chronic illness.

So, can you think of any television dramas that has a long-standing character with either a neurological condition, or any other chronic illness?  What if your life was a television drama; which television show would compare to your life?  As ever would love to hear your suggestions and thoughts!  Feel free to add your comments below…

Wordless Wednesday: Result of trembling legs and falls…

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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 prompt reads as given:

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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What’s in a name?

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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 prompt reads as given:

“Health Tagline”…Give yourself, your blog, or your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Again this is a prompt that has been involved in the Health Activist Writer’s Month Challenge during a previous year; so again I thought I would do the prompt a little differently than described.

What is in a name?  Not only is it a very famous quote from Shakespeare’s ‘Romeo and Juliet’ but it  also has a significant value in everyday life; every person recognises themselves by their name.  A name gives an identity  and meaning whether it be a person, a book, or even a blog.  A names enables us to be able to identify a person or an object, as well as being able to differentiate one thing from another.  A name is powerful tool in language.

So to choose a blog name is important; it not only gives the blog its own identity but also gives the writer a voice.  A name gives the audience an understanding of the subject matter of the blog, even before they start to read. So, what made me choose the name ‘My Brain Lesion and Me’?  For starters, I thought the name was reminiscent of a book; of a story and in my opinion that is exactly what the blog is about – it is a story of my life and experiences with living with a neurological condition.

In a previous year, I had decided to come up with the tagline ‘Once upon a Dizzy Spell…A story of a girl living with a neurological condition’.  What made me choose this particular tagline is because as a young girl I loved fairy tales, especially the classic tales of princesses and princes.  I was an avid viewer of Disney films such as ‘Beauty and the Beast’ and ‘The Little Mermaid’ and loved the romantic stories and the promise of a happily ever after.  Another reason for the chosen tagline is that my life living with a neurological condition all started with that very first dizzy spell all those years ago.  And that dizzy spell was the beginning of the journey to where I am now…

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And what if I were to give myself a tagline, what would I choose to give myself?  I was thinking long and hard and decided in the end for:

Stumbling along the silver lining

I decided upon this particular tagline, as for starters my legs have been particularly bad recently, and often due to the trembling, walking becomes a lot more like stumbling!  Furthermore, I would like to think that I am a positive person despite my neurological condition.  For example, I keep a positivity board and scatter various items adorned with positive quotes as an attempt to look for the silver linings in life, as hard and difficult as living with a chronic illness can be, and so the above tagline for myself was born!,

If you had to create a tagline for yourself, what would yours be?  As ever would love to hear your thoughts and suggestions so please feel free to add your comments below…

Clichés often heard when dealing with chronic illness…

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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:

Well, that’s just crazy!…What’s the most ridiculous thing you’ve heard about your health condition?  Was there any context?  What did you think at the time you heard it – and what do you think of it now?

This prompt has actually been used a couple of times previously and so therefore I have decided to come at the prompt at a different angle.

When someone is living with a chronic illness, everyone seems to have an opinion.  People will give advice on how to live and deal with said illness, advice on treatments and so forth.  As well-meaning as that they may be, they are often extremely unhelpful.  Therefore, this blog post will look at the more popular clichés that we chronically ill often hear:

  1. “Well, it could be worse..” or “There are people much worse off…” - I think that everyone living with a chronic illness realises this; and as much as the statement is true, it however still does not help us feel any better regarding our own situation.  The statement only really adds to the feelings of loneliness and isolation that already exists in our lives as a result of chronic illness.  In addition, feelings of  suffering and pain are entirely subjective, and therefore you cannot measure one person’s pain against another.  We are still going to be in pain, and the thought of someone else being worse off is not a comfort to us.
  2. “You need to get out more; that will make you feel better…” - This is another cliché that can be especially infuriating to hear when you are chronically ill.  Especially as there is nothing that we would like more, than to be able to get out of the house and do everything that we enjoy such as shopping or socialising with friends as examples. However, we often feel too unwell to go out; and unfortunately there isn’t anything we can do about it.  Stating that we need to get out more just makes us feel worse and more depressed than usual.  So, please refrain from using such expressions.
  3. “Get well soon!” - As much as I realise that this popular expression is often used with the best intentions, it is especially hurtful for people like me living with a chronic health condition.  As the term ‘chronic’ suggests our condition is not going to improve; and that these conditions are ones which we will have to live with for the rest of our lives. It makes us feel misunderstood.  As much as this is a lovely phrase to use for someone with the flu or a broken leg for example, it just leaves us with the thought of “If only!”.
  4. “But you look so GOOD!…” - This has to be the most popular cliché that us spoonies hear from others.  It’s as if people cannot fathom that we are so unwell when we look so normal.  However, it is said that approximately 96 per cent of all chronic health conditions are invisible.  This suggests that the healthy population believe that a sick person should look a certain way and when we fail in living up to that expectation that they therefore do not believe we are sick.  This phrase therefore can be particularly hurtful.
  5. “Have you tried exercise?  That can be very beneficial for illnesses…” - Yes, I understand that exercise can be beneficial for a number of different conditions; for example, mild depression can be alleviated by taking part in some form of exercise as ‘endorphins’, the happy chemical is released during exercise.  However, with many chronic health conditions, it can be very difficult to undertake any form of exercise because of severe symptoms, such as fatigue.  In my case, for example, not only fatigue that can stop me from doing some form of exercise but also the dizziness and the trembling in the legs can make it very difficult to exercise also.
  6. “My friend’s aunt’s cousin has that.  She tried _____ and it really worked for her. Maybe you should try it?” - As well-intentioned telling us other people’s experiences and although you are trying to help us in trying to find something to help, it is important to note that with a number of different chronic conditions and particularly neurological conditions, every person are unique and each case can be very different.  What works for one person will not work for somebody else.
  7. “I know exactly how you feel.  I often feel like that…” - This is fine to hear from other friends who are also battling with chronic illnesses. however, it can be very hurtful and frustrating when other friends begin to compare their recent bout of flu or bad cold to your chronic health condition.  Being in pain and tired for a week is not the same as battling these symptoms for years.  So, please do not tell us that you know how we feel when you have not lived with or experienced chronic illness for yourself.
  8. “I wish I could stay at home all day…” - I find this particular statement very hurtful indeed.  We did not choose to be ill, and trust me when I say we would much rather be out living life, and working like you instead of being stuck at home all day feeling very unwell and tired.
  9. “Are you sure, it’s not just in your head?” - Again, this is a really difficult and hurtful statement to hear when experiencing chronic illness.  When doctors are unable to find an explanation for symptoms, it is automatically assumed that the person must be imagining, exaggerating or even faking symptoms to gain attention.  We get asked this by doctors a lot of the time, so please as friends or family members refrain from suggesting that the problem is simply all in the mind.
  10. “It can’t be that bad?” - The thing with chronic illness, is that it is an experience that you cannot possibly imagine, unless you have had personal experience with it, so again a statement like this can be very upsetting as it trivialises our whole medical condition.  Like the statement above it also suggests that we are making the condition up, and can often make us feel that our own friend or close family member does not believe us, which can add to the feeling of loneliness, isolation and depression that can often be associated with chronic illness, even if it was said with the best intentions.

The best thing you can do for someone with a chronic illness is just to listen to them.  Ask if there are anyways in which you can help them.  Be a supportive friend or family member.  We would really appreciate that more than hearing statements such as those above.

So, these are the few clichés that I have heard during my experience with chronic illness.  What are the some of the statements that you have heard from friends and family?  How did they make you feel?

As ever would love to hear your thoughts and comments.  Please feel free to add your comments below…