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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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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…

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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 given:

Superpower Day…It’s a bird, it’s a plane, it’s…you!  If you had a superpower – what would it be?  How would you use it?

I am sure that the majority of people who are asked this very question, they would answer with hypothetical superpowers such as invisibility, flying or the ability to read minds.  However, being a spoonie, I would like a superpower which is rather ordinary and mundane – and that superpower would be the ability of having endless energy.

Spoonie Superhero - looks just like you and me but with lots of energy!
Spoonie Superhero – looks just like you and me but with lots of energy!

One of the most common symptoms of a lot of chronic illnesses is fatigue.  Fatigue being defined as “extreme tiredness“.   As a result of fatigue, energy levels are severely reduced and in turn activity levels are also severely reduced.  All the chores that you once could easily complete, now feels as if you are attempting to climb an impossible mountain.  And as you are no longer able to complete as many (or sometimes no) chores, we are often very reliant on others to do things for us – such as cleaning, doing the shopping, cooking and so on.

This can often feel very demoralising , especially when being young and seeing others’ your age going out partying for hours on end and still being able to get up the next day and head for work, and there you are unable to complete small chores around the home. Therefore, the one superpower that I would choose to have over any other, is simply the power of having endless energy.  Being able to have the energy to be able to do everything that I would like to do, instead of completing something and then having no energy to do anything else for the rest of the day.  Even to be able to do the housework for my Mother and feeling that I have done something  to take the added burden away from her, and generally feel that I have accomplished something would booster my self-esteem and make me feel valued.

Recently, the fatigue that I have been experiencing has been very bad – after going out with my carer shopping, going for coffee or to the gym, I am absolutely worn out; and at times have changed straight into a comfortable pair of pyjamas and having a nap!  And I am finding that I am even feeling the effects of going out the next day with no energy to be able to do anything.

So, wouldn’t it be lovely just to have endless amounts of energy instead of being so tired that you have no energy to be able to do anything?  Imagine the freedom that could come from that…

 

What would you do if you had endless energy? Feel free to comment below.

Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.

At other times, however, symptoms are out of control; life feels as if you are on a battlefield –  your condition and its symptoms are at war with your brain and the rest of your body.

[Tweet “When symptoms are out of control, it can feel you are at war with your body”]

During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.

I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once.  The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time.  And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.

Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.

So, how do we cope when our conditions are out of control?   How do we deal when we feel at war with your own body?

I have learned that often we need to hold on.  Hold on until it passes.

As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.

I choose to hold on to hope – the hope that it will pass.

[Tweet “I have learned that often we need to hold on. Hold on until it passes.”]

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Choose Hope! My lovely badge from the wonderful Itty Bitty Book Company

But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.

To let go of everything that we cannot change.

As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done.  I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition.  However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed).  I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.

[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]

There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life.  I do have control, however, on how I choose to deal with the condition.  It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes.  Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.

[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]

So, to help me cope with living with a neurological condition, I both hold on and let go!  I hold onto the positives and let go of everything which I cannot control.  How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?

 

 

 

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Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on.  Add living with a chronic illness to the mix and the stress is exponentially increased.  The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.

Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life.  Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.

Give back to those who help us throughout the year...
Give back to those who help us throughout the year…

This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy.  It was then that I remembered the old adage ‘it is better to give than receive.’  And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year.  The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.

Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so.  However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.

Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.

After all, isn’t giving to others encompasses the spirit of Christmas?

 

This post is for the December edition of the Patients for a Moment Blog Carnival which this month is being curated by Abigail from Hidden Courage.

 

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