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HAWMC Day 20: Miracle Cure…

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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…

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HAWMC Day 19: 5 Dinner Guests

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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.

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HAWMC Day 18: Open a Book…

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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…

 

 

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HAWMC Day 17: Learned the Hard Way…

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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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HAWMC Day 16: Pinboard

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Welcome to another post for the 30 Days, 30 Posts Challenge as part of the WEGO Health Activist Writer’s Month Challenge. It’s Day 16 and today’s prompt says the following:

Pinboard…Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them

For those who are not aware, Pinterest is a ‘virtual pinboard’ and allows users to organise and share photographs that they love or inspire them. Users are also able to browse pinboards created by others who share they particular interests and a great way for discovering new ideas. Pinboards allow users to be able to plan special occasions such as weddings, or ideas for decorating the home or for new recipes.

I have signed up to Pinterest and my username is serenebutterfly for those wanting to have a look at my personal pinboard

This is a tough assignment today – my condition is, as already mentioned is invisible, so finding images that reflect my health focus. This is where Google is going to come in very handy!!

1.

Image: http://reference.medscape.com/features/slideshow/vertigo

The above image shows an MRI, the scan on the left depicts a brain stem lesion which is exactly what is wrong with me. However, it is not necessarily located in the same place as mine, however I thought that this image best showed what was going inside my head – the best way to show my health focus which is obviously my condition. Using an image of an MRI is the best way to illustrate what my specific health focus is – my condition…

2.

Image: http://pinterest.com/pin/126593439495125404/ (Courtesy of Kyle Mills)

Okay so could not find a picture that really defines ‘dizziness’ adequately, I mean it is something that you feel happen to you, and cannot tell if someone is dizzy by looking at them. However, this picture does show what my view is like when experiencing an episode of vertigo – as if the world is moving, and also depicts what my vision is like, quite effectively during these attacks as I very often have visual experiences – things become very out of focus and blurred and even double vision. Excellently portrayed by the image as you are able to see two images of the woman’s face. Closest picture I could find which really summed up the experience of vertigo and visual disturbances…

3.

Okay, so this is the third and final image I have chosen. Again my condition or the symptoms that I experience are not visible, and therefore I have to use images that are a metaphor for what I face on a daily basis. The constant dizziness, is as if my world is always unbalanced, which is portrayed by the rocks being on a tilt. Also, one can never tell when one of the rocks is going to fall off and fall to the ground…This also depicts, in a really clever way the problems with my legs as just like the rocks, I never know when my legs are going to collapse, causing me to fall to the ground…

I thought I would share one more with you, as it is something that made me smile when I found it on Pinterest and something that I can very well relate to because of all the falls that I endure on a daily basis:

So, what do you all think of the images that I have chosen to represent my health focus? Are there any other images that I could have used to represent my condition? If you had to create a pinboard for yourself, what images would you pin?

As always love to hear your views, comments or suggestions…

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