HAWMC 2013 Day 30: Recap!

 

 

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:

You made it!  30 posts in 30 days!  Today, write a recap of your experience.  What was your favourite prompt?  Least favourite?  What have you learned? 

Well, I did it!!  For the second consecutive year I have managed to complete all 30 days with no need to use the ‘free-pass’ cards!!  It feels like a huge accomplishment especially as I have experienced several bad days.  Preparation seemed to be the key this year, especially as I am busy with other activities such as the Monday and Wednesdays groups that I am involved with and the day out once a week with my Personal Assistant means that I am not in the house all of the time, so I had to write many of the prompts before the day that it was published.

Just like last year, I immensely enjoyed the month-long writing challenge – I loved the challenge of all the prompts.  The prompts are not only a lot of fun to write but I also feel that the prompts enable us to look and write about our particular health conditions differently than we would normally.  For example, some of the prompts required me to write about topics that I might never would normally.  For example, the topic of burnout was selected to be discussed from one of the prompts, and if it wasn’t for the HAWMC I might never have written about the topic.  One of the prompts that I found particularly challenging was the Acrostic Poem from Day 13 (Acrostic Poem of my Health Condition) – it wasn’t necessarily the subject matter that was challenging as the whole blog is about living with my health condition, but the form itself.  I haven’t written a poem in many years so it was quite a challenge being asked to write one – just glad that I prepared in plenty of time and was able to write a decent attempt!

The prompts like always were a mixture of being, fun, challenging as well as being thought-provoking.  One prompt I really enjoyed, but initially found very challenging was the post regarding Adversity (“The flower that blooms in adversity…”).  I initially found it very difficult to write especially regarding when I bloom best.  However, although I found it challenging, I thought in the end it was one of my favourite and best written post!  I also loved the prompt which asked us to ‘spread the love’ and thank some of our favourite health activists; this was such a great opportunity for me to thank those who have supported me and helped me through some tough times with illness (Sharing the Love!  I would like to thank…).

I would also thankful for the Wordless Wednesday posts, as it gave a break from writing long posts and was fun coming up with creative photographs and drawings to dictate something without using words!  Would love to make this a regular feature but would need some ideas!  If anyone has links or ideas to do this please comment below and share!

Least favourites?  Perhaps some of the prompts that I had written about during previous writing challenges such as the post regarding caregiving (Carers, How to treat those you care for), and discussing favourite social networks (Why I Love to Tweet) to name but two.

Anyhow, regardless of the good and the bad through the experience of this writing challenge it was a challenge that I thoroughly enjoyed and look forward to taking part next year!   Thank you WEGO Health!

What did you think of my posts for the HAWMC?  What were your favourite posts to read?  Any you didn’t enjoy reading?  Loved to hear your views so please feel free to leave any comments/suggestions!

HAWMC 2013 Day 29: Celebrating Awesomeness!

 

 

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:

We all know Health Activists are awesome.  Share three things you love about yourself, things you’re great at, or just want to share.  Don’t undercut or signpost!

This I have to admit is a difficult post for me to write as I am not very good at paying myself compliments.  Often, I a self-deprecating and very rarely think about my positive qualities – I often have to ask people to help me pick out my best qualities as I have no clue!

Recently, I have started tapping into my creative side and making greeting cards.  At first, I started making them for myself to give to relatives and friends during times of celebration.  However, after taking them into my afternoon social group, I instantly had orders from the members asking if I could make some for them to give as cards.  Not only do I find it very relaxing sitting down and making the decopauge cards, it also takes my mind off the pain I experience.  I have had a lot of compliments from people regarding my cards; so at least other people think that  it is something that I am good if I don’t always believe it myself!  Here are some of the cards that I have made:

 

 

Writing is something that I love doing, and this blog has turned into a big passion of mine.  I love sharing my experiences and thoughts with others, and there is nothing more satisfying as a writer than receiving comments from others and telling me that they enjoyed my writing and they were able to relate to what I wrote in that particular post.  I have had the fortune to receive comments on my blog, Facebook or on Twitter how much people enjoy my writing, which means so much.  Writing is something that I have always been good at, and so was the main reason why I decided to start the blog as a way of raising awareness of neurological conditions.

 

 

Another thing that I love is my breadth of my general knowledge!  I love nothing more than playing general knowledge quizzes whether this is watching quizzes on television; playing board games such as Trivial Pursuit or taking part in a pub quiz.  At my local group, one of my nicknames is ‘Quiz Bandit’ as I tend to know the answers to a lot of the questions asked, and many times have seen my team to victory!

 

So there are 3 things that I am good at!  Took me a while to even come up with these – but in the end I managed it!  So, what are some of the things you are good at, or love about yourself?  As ever, please feel free to comment below….

HAWMC 2013 Day 28: You Must Follow These Brilliant People…

 

 

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:

Create a must follow list for your community on a single social network.  Share your top 5-10 tweeters, bloggers, or Facebook pages. 

I so wish that I could share some fantastic resources and tweeters who share the same condition in which I live, however, the condition seems to be rare and have yet to meet anyone with the same diagnosis.  However, I have had the pleasure to meet some truly fantastic people through Twitter, and who often sends me words of comfort or support through my own struggles and have become great friends in the process.  So, if you are on Twitter please follow them and find out for yourself how kind and beautiful they all are:

Image Credit: The Daring Librarian @ Flickr

Marissa Christina – @MarissaAbledis

Pamela Sloate – @dystoniamuse

Anya de Longh – @anyadei

Aisha Bukari-Clarke – @AishaJemima

Unseen Magazine – @unseenmaguk

Sarah Levis – @GirlWithTheCane

Chronically Awesome Foundation – @ChronicallyAFnd

Patients Association – @PatientsAssoc

Peggy – @moyamoyagarden

The Spin Sisters – @TheSpinSisters

I have met so many wonderful people on Twitter but I was only able to choose up to 10 to share with you today.  For all those not included, know that I truly value your friendship and kindness you have shown me.  Thank you x

Who are your top tweeters/bloggers/Facebook Pages?  Please get in contact and share them below!

HAWMC 2013 Day 27: The Story of My Life….

 

 

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!

HAWMC 2013 Day 26: A pain-free pass…oh what a joy that would be!

 

 

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…

HAWMC 2013 Day 25: What I have learnt from other Health Activists!

 

 

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!”

 

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!

HAWMC 2013 Day 24: Pinterest Board

 

 

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

My reality

HAWMC 2013 Day 23: “There’s an app for that!…”

 

 

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

 

 

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!

HAWMC 2013 Day 22: My Daily Inspiration

 

 

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:

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism 

 

I am not sure whether it fuels my activism but sometimes inspiration comes from the smallest of tasks.  In our house, I am the designated dishwasher!  Of course, at times I am unable to complete the task because of illness, but most of the time I wash the dishes after breakfast, lunch and dinner.  Often people, think of washing dishes they find it a chores; a mundane task that needs to be done.

 

 

However, I find it very relaxing, and when I am doing the dishes I find that it allows me to listen to my music, and think freely as I feel the warm water through my hands as I wash all the dishes.  It allows me to look outside the window to our garden and look at the beautiful flowers that bloom there.  Often, thoughts pop into my head as I stand there; I remember little details that I have forgotten about or interesting topics that I might discuss on the blog.

I can dream freely whilst standing at the sink; dreaming of a life without illness or all the little things that I want to achieve despite it.

Many see washing the dishes is a chore; however I see it more of a chance of relaxation; a chance at being inspired as well as allowing us to dream about all the possibilities that life has to offer!

HAWMC 2013 Day 21: “The Flower That Blooms in Adversity…”

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:

“The flower that blooms in adversity is the rarest and most beautiful of all” – Mulan.  True or false?  When do you bloom best? 

 

 

I do believe the above quote is true – replace the flower with a person and put them through various life’s challenges; some despite the challenges will continue to persevere and flourish whereas as others will become bitter and wither.  I would like to think that I am the former – that I am a flower that has bloomed despite the adversity that has befallen me.

Many of us battling chronic illness; whatever condition that might affect us; have instead of wallowing in self-pity and misery have instead turned illness into something positive by writing about our experiences with illness and spreading awareness to others.  Going through illness is not easy – it is often exceptionally difficult,; symptoms overwhelming our bodies and mind.  However, all those difficulties; all the difficulties that we face every day makes us stronger and determined.  Determined that despite the illness, and the restrictions it places upon our lives, we will rise above them and live the life in the best way that we can.  We appreciate all the good days so much more than perhaps healthy people, as often we rarely experience the good days.

Very often, being chronically ill, we are more sympathetic and emphatic of the struggles that others face.  We are often more caring of others, and love nothing more than to support others’ facing similar adversities then our own.  This is certainly what I have found since joining Twitter.  If I am having a bad day, or facing some other difficulty, I am inundated with tweets of support from fellow ‘spoonies’ and other people whom I am honoured to call my friends.  Often, we are more non-judgemental than most; especially considering invisible illnesses and disabilities, as we can appreciate that every person has their own struggles and inner demons, and are aware that although we may not be able to see all illnesses it doesn’t mean that they do not exist.

We bloom despite our personal adversities by all joining together; regardless of gender, race or even by diagnoses.  We form communities and by supporting each other, and offer comfort when needed, we not only bloom and grow individually but also have the honour to see the entire plant, and group bloom also.  We all bloom and soon an entire garden is filled with the most beautiful of flowers.

 

Just like flowers; a group of chronic illness sufferers bloom into a beautiful garden

 

So, how does adversity affect my life?  For starters, it often stops me from doing all that I want to do in life.  Often, fatigue overwhelms me and as a result all I can do is lie on the sofa watching TV or a film.  Adversity has touched my life, as dizziness and vertigo affects my daily life, in a completely negative way; because of these I find it difficult to go into shops that I may want to visit, or I became extremely unwell and nauseous within a blink of an eye and need to go to bed.  The spastic paraparesis has adversely affected my life as I am not able to stand for very long; I lose sensation in the legs (and sometimes even my hands); often experience tremors in the legs and hands or very often they will just collapse from under me.  A few years I never envisioned myself needing to use a wheelchair, however now I have one and will often need to use it.  Chronic illness is like that though; like a snake it often creeps toward you, never noticing it is even there, until it bites you, and your life has instantly changed.

Personally, the adversity that the health condition has placed upon my life has affected me psychologically and socially – often I become down because of all the symptoms that I experience, and how often I am unable to complete tasks or go out.  And it has also affected friendships; people do not understand the limitations that the condition has placed upon my life; and so friends have come and gone, often with no warning and some who never contact me, or invite me out with them.

When do I bloom best?  I have to say this is a very hard question to answer!  I am really not sure when I bloom best; often it just seems I am muddling along in life, and attempting to do my best to keep living despite battling with the condition in which I am afflicted.  I recently found a love of the water; now with the support of a Personal Assistant, I am now able to go swimming, and I am loving it!  I am pain-free, and if my legs do give way the water supports my body weight and they are able to give way with no injuries!  I feel that I also bloom when I am determined and set my mind to something; for example, I recently managed to sit through a screening of Les Misèrables.  Previously, I hadn’t been to the cinema in some years, as the cinema experience can trigger episodes of vertigo and nausea, however, as I really wanted to see the film in question I managed to push through all of the horrible feelings, and managed to see the whole film.  I find often, that because of my condition and the places which can trigger them (such as high ceilings and open spaces), and as there are plenty, I have to push through the dizziness and vertigo a lot of the time, and when I do manage to do it successfully a real sense of accomplishment is felt and I bloom even more so!

Do you think the above statement is true?  How does adversity affect you?  When do you bloom best?  Please share any comments below; I always love to hear from my readers so please get in contact….