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Chronic Illness

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Welcome all again.  It’s a bright, beautiful sunny morning outside, on the 21st April.  And time for a new post for the WEGO Health ’30 Days, 30 Posts’ Challenge.  The prompt for today is as follows:

Health Madlib Poem…Go to http://languageisavirus.com/cgi-bin/madlibs.pi and fill in the parts of the speech and the site will generate a poem for you.  Feel free to post the madlib or edit it to make it better…

I have to admit that I hadn’t a clue what a Madlib was, which was where Google came in very handy.  Apparently, Mad Libs is a word game frequently played at parties and is especially popular among children.  Mad Libs (from ad lib meaning a spontaneous improvisation) is a phrasal template word game where one player prompts another for a list of words to substitute for blanks in a story, usually with funny results.        Information taken from Wikipedia.

In this particular challenge, the website given in the prompt asked me to provide words such as nouns, verbs, adverbs and adjectives and then generated a poem using the words I provided.  The following in a mixture of my words and those of e.e cummings, based upon his poem entitled ‘somewhere i have never travelled, gladly beyond’.

 Here is my Health Madlib Poem:

alone i always fall, fall almost broken

any room, your lesion lies there invisible

in your most inner brain are things which seclude me,

or which i cannot see because they are too deep

 

your trivial look quickly will turn me

though i have looked at their lights

you feel suddenly dizzy  by dizzy myself as flashes brightly

(grasping tables, falling) her weakness obvious

 

or if your wish be to catch me, i and

my legs will stand very shakily, uncontrollably

as when the scene of this world spins

the vertigo increases intensely

 

nothing which we are to do in this circumstance can

the power of your intense movement; whose strength

compels me with the nausea of its disturbance,

legs buckling and crumbling with each tremor

 

(i do not understand what it is about you that causes)

and reacts; only something in me damaged

the stem of your brain is scarred than all others

falling, not even the crutch, has such fast reflexes

And here is the original e.e. cummings poem of ‘somewhere i have never travelled, gladly beyond’:

 

somewhere i have never travelled, gladly beyond

any experience, your eyes have their silence:

in your most frail gesture are things which enclose me,

or which i cannot touch because they are too near

 

your slightest look easily will unclose me

though i have closed myself as fingers,

you open always petal by petal myself as Spring opens

(touching skillfully, mysteriously) her first rose

 

or if your wish be to close me, i and

my life will shut very beautifully, suddenly,

as when the heart of this flower imagines

the snow carefully everywhere descending;

 

nothing which we are to perceive in this world equals

the power of your intense fragility: whose texture

compels me with the colour of its countries,

rendering death and forever with each breathing

 

(i do not know what it is about you that closes

and opens; only something in me understands

the voice of your eyes is deeper than all roses)

nobody, not even the rain, has such small hands

So, what do you all think?  Please leave a comment below, love to know your thoughts!  Have you created your own madlib poem, please share them, would love to read them.

Until Tomorrow…

Welcome again readers. Today, is the 20th April…which means it’s the 20th Post of the WEGO Health Activist Writer’s Month Challenge.  And the prompt for today reads:

Miracle Cure…Write a news-style article on a miracle cure.  What’s the cure? How do you get the cure? Be sure to include a disclaimer!!!

Again, this prompt has been somewhat of a challenge for me – as my condition is due to a lesion in my brain stem, there is obviously no treatment, nevermind any cure that can be offered to reverse the damage that has already been done.  However, have managed to come up with a miracle cure for one of the many symptoms that I constantly battle with on a daily basis – spasticity…

SPASTICITY, NO MORE!! NEW DRUG IS FOUND TO RELIEVE THE SYMPTOMS OF SPASTICITY

Written by Rhiann Johns

Spasticity is defined as an “involuntary muscle stiffness, characterised by increased muscle tone and exaggerated reflexes”.  As a result, patients exhibiting spasticity report that the affected muscles feel stiff, heavy and difficult to move, and is often found in neurological conditions such as multiple sclerosis (MS), Parkinson’s Disease, Huntington’s Disease and Cerebral Palsy.  Spasticity although the effects can be mild to severe, can interfere with normal functioning, causing difficulty in walking as well as leaving sufferers in severe pain and discomfort.

However, a new drug called Tiptrimax, which is administered by an injection in the affected muscles have found to be highly effective in treating spasticity, with many sufferers reporting their spasticity being greatly reduced after several weeks of taking the drug. One patient reported “I have noticed a significant reduction in the number of spasms that I experience, as well as the amount of pain the spasticity often leaves me in.  My legs seem to be much lighter now, and walking and other movements in my legs seem much easier.  I feel I will now be able to enjoy a more fulfilled life thanks to Tiptrimax!”  This drug is certainly a miracle for me.  I cannot wait to be able to take long walks with my dogs and exercise like I used to before MS came into my life.”

The UK drug regulators NICE (National Institute for Health and Clinical Excellence) have now fully approved the drug and will be available to all patients exhibiting spasticity by September.  It is said the drug can only be administered by a nurse or other healthcare practitioner once a week into the affected muscle areas.  The long-term effects of taking the drug are unknown but there have been no reports of any lasting or significant side effects.

***DISCLAIMER:  THE ABOVE ARTICLE IS ENTIRELY UNTRUE AND ONLY WRITTEN FOR THE 30 DAYS, 30 POSTS CHALLENGE FOR WEGO HEALTH HAWMC.  THE DRUG MENTIONED DOES NOT EXIST

So, that was my fictional miracle cure article for today’s prompt.  Hoped you enjoy and again please feel free to comment below…

Until Tomorrow…

Hello Everyone, a brand new day has arrived and is now time for the next post in the WEGO Health Activist Writer’s Month Challenge.  And the prompt given for today is as follows:

5 Dinner Guests…Who are 5 people you’d love to have dinner with (living or deceased) and why?

So, this challenge is quite tough, as there are many people, living and deceased, who would be fascinating people to invite for a dinner part.  After some thought, I have  decided that I would invite the following people for my ultimate fantasy dinner party:

Image: http://llmcalling.blogspot.co.uk/2012/03/dinner-party-for-peace.html

1 and 2. Marissa and Theresa: whom I have met through a support group for people living with dizziness.  I would love to invite all my friends who I have made from various groups and communities I have met during my journey of living with chronic illness.  However, as I only have 5 places I have chosen Theresa and Marissa as I feel these two amazing women have my biggest supporters, picking me up during the bad times, even contacting me via Skype when I have been feeling very down…

3. Jodi Picoult: I have chosen Jodi Picoult as I am a massive fan of her works, and believe she is a fantastic author, owning all of her 19 published books.  As a writer myself, I truly admire her writing style and the extensive research she undertakes for the subject matter which she is writing about.  Not only are her books absorbing, but also raises questions various ethical and moral dilemmas, making you ask question your own beliefs.  If you have not read any of her books, I would highly recommend reading them…

4. Adele: I have chosen Adele, as I believe she has an amazing talent, and often find myself listening to the lyrics of her songs, finding words and phrases that I can relate to.  Recently, watched a concert that was recorded when she performed at the Royal Albert Hall in London.  Not only did she sound amazing, but was also incredibly funny and down-to-earth.  I am sure she would have many interesting anecdotes to share, as well as the opportunity for high-quality entertainment during the evening….

5. Michael J. Fox: I am not a huge fan of Michael J. Fox but truly believe he is an inspiration to many, especially those suffering from chronic and life-long conditions.  It is inspiring the way he battles Parkinson Disease with grace and dignity, raising the profile and awareness of the condition and help a great many people also battling the degenerative neurological disorder. I recently discovered a quote that he wrote, which said “I can get scared, get frustrated, but I never get depressed…because there’s joy in my life”.  I believe there are a great many lessons that could be learnt from a man like him, as well as being able to gain insights on how to cope when facing a life-long neurological condition…

So, there are my 5 dinner guests.  Who would be your top 5 dinner guests?  Share yours below, or post the link to your blog so I can read them.

Welcome everyone again.  It’s now Day 18 of the ’30 Days, 30 Posts Challenge’, and a new prompt to challenge us all Health Bloggers!  Today’s prompt reads:

Open a Book…Choose a book and open it to a random page  and point to a phrase.   Use that phrase to get you writing today.  Free write for 15-20 minutes without stopping.

Have been trying to decide which book I should choose for today’s challenge.  I was going to opt for a book by one of my favourite authors Jodi Picoult.  However, as I blog about my health condition, I thought it may be easier to choose a ‘Health related’ book to stay on topic of my blog.  Therefore, I finally decided on a book entitled ‘Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness’.

The book is said to give hope and effective coping strategies for those suffering with invisible chronic illnesses and making them aware of their attitudes towards their illness and how to communicate effectively with family, friends as well as their doctors in a way that meets the needs of the individual.  How to random choose a page, and to pick a sentence…

So, I randomly fell upon page 29 and choose the following sentence:

Invisible diseases can wipe out one’s self-confidence and peace and in their place leave painful doubts about one’s own sense of what is real.

Now that I have chosen at random that passage, I feel that sentence is one that I can relate to and one that could have been written about me.  After the dizziness started at age 8, I went through years of trying to search for a diagnosis, going through many blood tests to determine the origin of the dreaded dizziness.

When no cause could be determined, is when the doctor used the “it’s all in your head” card, and describing the root cause of the dizziness as being due to an anxiety disorder.  As a result, it made me feel that I was the one at fault, to be blamed for my problems.  As the dizziness slowly progressed and became so bad that I was unable to leave the house unless I was accompanied by another person, I was referred to the local Community Mental Health Team.  And so began endless classes and other sessions of Anxiety Management Techniques, Relaxation and Breathing Exercises to lessen the anxiety I felt when in certain situations and to lessen the dizziness I felt.

I did put all these techniques and other tips that I learnt into practice, and felt I certainly did feel less anxious when going out, although I still needed to be someone.  However, I found that the dizziness that I experienced did not lessen at all.

Therefore, to reiterate the sentence from the book that I had chosen – it really dented my self-confidence and made me doubt myself, “was the dizziness that I felt real, or am I simply imagining it? Am I really experiencing it?”.

After a time, I did begin to even doubt if the doctors were correct in their diagnosis and felt that perhaps the dizziness was caused by something other than anxiety.  However, I did not have the self-confidence to bring up my concerns with the doctors, and felt that perhaps that I was being a hypochondriac.  After all they are the professionals and know a lot more than myself.

It wasn’t until another healthcare professional I talked during a course I was participating in, also voiced her concerns about the dizziness, and talked about possible neurological causes.  Hearing this from a ‘professional’ than gave me that push to go and see a doctor about getting the ball rolling for a referral to a neurologist.  The doctor whom I saw however was unconvinced that I needed to see a neurologist – sometimes if you have been branded as a patient with ‘psychological problem’ then it is hard for you to be taken seriously.  It helped that I also had a parent in my corner acting as an advocate.  And then finally I got the referral I needed to see a neurological consultant…

And as they say, the rest is history!!….

I hoped you enjoy today’s post…Again, please feel free to comment…

 

 

Welcome again to another day, and another post for the 30 Days, 30 Posts Challenge for WEGO Health Activist Writer’s Month Challenge – and some of these posts have certainly been a challenge!!  I hope you have all enjoyed reading the entries so far, and today’s prompt is another one which really requires a certain degree of reflection:

Learned the hard way…What’s a lesson you learned the hard way? Write about it for 15 minutes today.

There are a great many lessons that someone with a chronic health condition can learn through the journey of being unwell.  However, the one I have chosen was inspired by a quote I found on my Pinterest page, and says the following:

There are so many times where I have sat and wondered what my life would be like if I didn’t have the long-standing brain stem lesion and spastic paraparesis.  Where I would be in life, and what I would be doing with it? Would I even be living in my own place, away from my parents?  So many times, have I dreamt of the life that I so desperately wanted – a good job, my own car and house, good friends to share good times with and so on.  And also been many times where I have wanted to be anyone else but myself.

However, as the quote says, dreaming about a life that we don’t have, very often stops us from living a life that is out there waiting for us to grab it with both hands…

Very recently, myself and my parents have referred myself to Social Services.  To find out what help there may be to help me live a fuller life – maybe help to get me out of the house more instead of being stuck indoors the majority of the time, to gain a more independent and active social life.

And as I have found out, it looks like I am eligible for help.  For instance, there is a scheme called ‘Direct Payments’ where a person is given a grant from the local government in order to employ a personal assistant.  On personal circumstances, and the needs of the person themselves, these personal assistants may be for someone to come in to the house and clean, or in order to pursue social activities in the wider community – trips to the local cinema or theatres, using the services of the local leisure centres and so on.

In addition, I may be eligible for an assessment by Occupational Therapists for mobility aids and adaptations to help me around the house and in order to prevent accidents and falls. It may be that I could have a wheelchair to help get outside of the house more, and to prevent falls outside and without the worry of my legs giving way.  A wheelchair may be a fantastic idea, as it would give me the opportunity to visit more places, and to visit them for longer as I’m finding that whenever I am going out, it is only for short periods of time due to the weakness in my legs and the fact that I am unable to stand (and therefore walk) for long periods of time.

There are also schemes which take disabled or people are otherwise unable to get out of the house on day trips to places outside of the local community as a means to getting to know others and to help starve the loneliness that they may otherwise face.

Therefore, if my days weren’t spent dreaming of a life other than the one that I have, it may be that I may have looked and found help sooner.  I may have thought about the possibility of gaining help from Social Services before it was suggested to us my somebody else if I weren’t wishing away my condition or dreaming about being anybody else other than myself.

If I hadn’t done that I may be living a different kind of life that was waiting for me and just within my grasp – met all different kind of people, made new friends and contacts, and seen different places that I may otherwise not have seen, instead of being stuck inside with no company to speak of…

This is the lesson that I have recently learnt, and learnt the hard way…

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