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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 is as follows:

If you wrote a book about your life, your community, your condition, or your health-activism – what would you title it?  Come up with 5 working titles.

Perhaps someday I may write a book about my experiences with my condition; certainly as writing is something that I enjoy immensely.  I am not sure whether the book will be of any interest to others however.   So, what are some of the titles that I could call the book that would chronicle the condition in which I live and the experiences that I have had living with it.  Let’s brainstorm:

Well, the first title that I have come up with is the title of this very blog ‘My Brain Lesion and Me.’  What a better title than that of the blog in which started me on the journey of writing and chronicling my experiences with living with the condition in which the book delves into.  The book is also quite self-explanatory and informs the reader straight away about the theme of the book.

Another title that I have brainstormed is ‘A Medical Malady.’  I have chosen this particular title as because of the many generalised symptoms that the brain lesion causes; meant that the condition went undiagnosed for many years.  For many years, I was sent to various specialists in many areas of medicine to try and get to the bottom of the cause of the severe chronic dizziness that I was experiencing.  And when this didn’t occur however, I was labelled as suffering with an anxiety disorder, in which the doctors put all my symptoms as the result of this particular psychiatric diagnosis.  I remember whilst at University and was undertaking a variety of medical tests and hospital appointments, after the dizziness became worse, a friend once said that I needed to see Dr. House from the television programme of the same name, as he would surely get the answers that I needed.  I was a medical malady indeed!

An alternative title could also be ‘Fractured Storms’.  I thought this was an interesting title and one in which is ambiguous; not letting potential readers in on the secrets that the book contains.  I often will pick up books with interesting titles; titles that catch my eye and makes me wonder what the book could be about!  The brain lesion is indeed similar to that of a fracture; of a scar lying within my brain stem and causing the ‘storms’ or symptoms that affect my daily life.  The storms causing symptoms such as the constant dizziness, episodes of vertigo, as well as the spastic paraparesis affecting my legs which results in pain, weakness and stiffness.

Another working title that I have come up with is ‘The Life and Times of a Neuro Patient’.  Again, this title instantly informs the reader of the subject matter of the book, and would be an instant interest for other neurological patients.  After making contact with other patients with other neurological conditions, I have found that there are many similarities regarding our experiences regardless of our differing diagnosis.  Very often people diagnosed with a neurological condition like me, have to wait many months before seeing a neurological consultant.  Recently, I have had to be referred back to the neurological department of my local hospital because of deteriorating symptoms, and have been informed that I have a six and a half month wait to be seen.  This however is not uncommon amongst neurological patients. How I wish that when I was first diagnosed that I could have read a book by someone who was also living with a neurological condition like myself; and whom also experienced similar problems that I was facing. I would have definitely bought a book that was entitled ‘The Life and Times of a Neuro Patient.’ 

And the final working title that I have chosen is ‘A Disequilibrium Life’.  Again, as most of you know, the dizziness and balance problems have long since been with me; ever since I can remember I have been battling dizziness.  Therefore, much of the hypothetical book regarding my life and my chronic illness would document the problems with dizziness, vertigo and balance, so the title should reflect this too.

So, what do you think of these working titles for the book regarding my life and battle with the long-standing brain stem lesion with which I live?  Which title do you like best?

As ever would love to hear your comments/suggestions, so please get in touch and comment 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.

Today’s prompt is as follows:

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)?  How would being pain or worry-free impact that day? 

It is ironic that I should be writing this post on a day when the pain I experience is bad.  Oh, how I wish that I could use a ‘pain-free’ pass for today, although perhaps I would prefer to save the pass for another time; perhaps a time in which a pain-free time would be beneficial.  The group I attend ‘Life 4 Living’ encourages us to write a bucket list – all those little things that we would love to achieve before we die.  Recently, we have had a couple of deaths within the group; which has reminded us how short and previous life can be, and as a result I would love to use a pain-free pass to be able to complete something from my own personal bucket list…

Recently, as some of you may remember from a recent post entitled ‘To Go or Not to Go‘ my parents and I are looking into possibly going on a cruise next year.  It has been my dream to visit Italy for sometime, but because of my health, certain ways of travelling are unsuitable for me, such as flying or travelling by bus for example.  Therefore, going on a cruise is the last option for me to achieve my dream of visiting Italy.

One advantage for sufferers of chronic illness of going on a cruise, which you are unable to get with other holidays, for example, is the times that you become unwell or pain becomes unbearable is that you can go straight back to your cabin with very little hassle.

However, if I were to use a pain-free pass, it would be on day when the cruise ship is docked in Italy itself, especially in Rome and Florence.  Why?  If I were pain-free I would go exploring and go sight-seeing within these beautiful cities without any pain and also the worry that pain will suddenly appear, spoiling the enjoyment of the day and making precious and exciting memories.   I could go and visit the Sistine Chapel; the Colosseum and the Trevi Fountain as well all the other beautiful scenery and architecture within the beautiful city of Rome.  Of course, a day out to a new city is complete with some retail therapy!  And the chance to soak up a different culture; to experience authentic Italian food and ice-cream – and all for myself instead of hearing about others’ experiences of travelling or reading about it in books or seeing the sights on television.  What a dream it would be!

How amazing would that be?  A pain-free day; and a day free of any worries!  A day in which I could spend it exactly how I wanted without the worries that chronic illness often presents in our lives.  A chance to enjoy just a special day with family during a once-in-a-lifetime holiday without my condition getting in the way or spoiling it as often happens during my daily life.  Now, we have to try and make it happen!  Fingers crossed….

What would your ‘pain-free’ pass day look like?  Share your thoughts below and comment!  Always love to hear from readers…

 

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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:

Share something you learned from another Health Activist (that everyone should know!) 

For this particular prompt; I didn’t just want to single out just one health activist because I have learnt so much from every health activist and blogger whom I have had the pleasure to come into contact with either through the blog itself or my Twitter account.  Each of these amazing writers’ and health activists have so much knowledge to share to everyone.  Obviously, the main advantage is that through reading others’ blogs, I have not just learnt their personal stories and whom they are as people, but have also gained a breadth of knowledge on a variety of different conditions.

However, by doing this and particularly after taking part in the ’12-12-12 Project’ over at Abledis.com and reading all the amazing stories of all the fantastic, and inspiring stories, it dawned on me how similar the experiences are for everyone who are chronically ill.  Regardless of the diagnosis; there are common themes that seem to be universal for everyone battling chronic illness; examples of these include:

  • Loneliness 
  • Fatigue
  • Pain
  • Sadness/depression
  • Frustration
  • Lack of understanding from GP’s
  • The same old responses by others’ such as “But you don’t look sick!”

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Before starting on this blogging journey, I often felt lonely, isolated and down regarding my diagnosis and not finding anyone else with the same diagnosis.  However, this is  not the case anymore, as I found a large number of new friends; all with different conditions or disabilities.  Despite that, however, I have found we still have so much in common regardless of our diagnoses, and the support and camaraderie have been amazing and have gotten me through all the bad days; and the times where I have been low.  Christine Miserandino and the ‘Spoon Theory‘ is an excellent example, how a simple analogy can be used to describe the experiences of chronic illness for many – regardless of people’s diagnoses, the ‘Spoon Theory’ is one which everyone living with chronic illness can relate to.

So, if I was to share any advice to others who may have been recently diagnosed and are feeling low, and perhaps are lonely and isolated, then I would tell them don’t be – there are plenty of support online, on Facebook, or Twitter that can help regardless of gender, location, race, nationality or even diagnosis!  Seek out all ‘spoonies’ and gain support from some amazing and caring individuals!

 

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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:

Create a Pinterest board for your health focus.  Pin 3 things.  Share the image

 

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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:

“I wish this gizmo could track my condition!”  Write about which device, application, program, etc, you wish helped to track your health 

I have an iPhone, and there are an overwhelmingly large number of applications available for the phone; many of them health related.  There are applications to remind you to take medications; to track fitness and nutrition, as well as keeping a record of symptoms and possible triggers.  There are also diaries and journals that you can download to the phone in order to take detailed notes of what is happening to one’s health.  For example, on my iPhone I have the following applications to help not only track my health but also keeps me entertained through illness itself:

  • Facebook, Twitter, Pinterest, YouTube and Instagram – love these as it keeps my spirits up; entertains me as well as allowing me to keep in contact with all of my friends and be up-to-date with all the latest goings on. 
  • WordPress – this is to keep up with my blog
  • Symple – this is a fantastic tool in order to track symptoms associated with your condition as well as all the factors that affect them.  If one has started a new medication then it really is a great tool in order to see whether it has been effective in managing pain, for instance. Find out more about the application by visiting their website
  • Games such as 4 Pics 1 Word, The Chase, etc – purely for entertainment value and excellent at keeping my mind off my pain and keeps me occupied whilst at appointments

 

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However, if I were to invent an application that could track my health condition; what features would it include?  For starters, I would love a way to track the number of falls that I experience.  During doctors’ and hospital appointments, I am always being asked how many times I have experienced falls in a given period, however, the truth is the number is so great that I lose count!  Therefore, an app which record the times I fall would be extremely useful; even more so if it could be done with one press of a button.

I would also find use of an app, that could send an alert to someone whenever one occurs.  This could be useful as a way of recording times when falls occur but also will be useful for getting help when a fall does occur, especially as I am often unable to get back up by myself.  It may also be useful in gaining a little independence when out and about with my parents, or carer – I could go and have a look at what I wanted to by myself without needing someone constantly with me, but then if a fall did occur, they would be alerted and come and assist me when necessary.

Because of the recent attacks, I have been experiencing of complete vision loss, the doctors advised to keep a diary of when such attacks occur and to record the time that the attacks last for.  However as my vision completely goes, I am unable to see the time, and therefore cannot record how long the attacks last for.  I searched and searched for an app that could assist be in doing so without needing my vision; perhaps through voice assisted technology, however I was unable to do so. So, an application which could do just that for me, would really help in keeping track of this particular troublesome symptom.  Even recording the times within the app, would also be useful, so I could instantly share it with doctors’ or consultants.

But most of all, the most helpful apps would have the option to be able to send all the data that has been collected could be sent to your doctor or hospital consultants and could then be added to your records.  This would make it much easier than, for example, keeping a written record and then remembering to take them to appointments.  Wouldn’t it be easier to be able to send data to our doctors between appointments so we can keep them up to date on our progress?  Especially if new medications have been introduced to our treatment regimen.  If doctors could keep-up-to-date by seeing data such as these between our appointments, and became concerned over deterioration in symptoms perhaps then they would be able to invite us for an appointment before a flare or relapse in our conditions occur.  Wouldn’t that make it easier for both doctors and patients alike?

If you could invent an application to assist you in your daily struggles with chronic illness what features would you like to see?  Share your thoughts and comment below!

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