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:
Post a picture that symbolises your condition and your experiences
Taken from: Matt Lassen Cartoons: Word of the Day - May 28 2011
Welcome to another post for the ’12 Days of being Chronically Thankful’, a revised version of the famous ’12 Days of Christmas’ for those living with chronic illness, like me.
On the ’6th Day of Christmas’ I was chronically thankful for…a theatre production!
Now, living with a chronic condition like mine, I am unable to attend a theatre production in person – most theatres are very big with high ceilings, as most of you are aware, high ceilings, and flashing fluorescent lights are a trigger for the episodes of severe vertigo that I often experience, and hence going to see a theatre production would make me extremely unwell.
However, a few weeks back, during one of my first trips out with my P.A, we visited my local library, and lo and behold I found a copy of a DVD of a production of ‘Les Misèrables’ that was filmed at the O2 for the show’s 25 year Anniversary. I was so excited as it is a show that I haven’t wanted to see for years, but because of my condition I have been unable to go and see it in London.
As a result, I instantly decided that I would rent it from the library, and on a day in which I felt really bad, leaving me unable to get out of bed, I managed to watch it on my computer. And I instantly fell in love with the musical – the story, the songs just everything about it! And for a couple of hours, I forgot about how bad I felt, I was still aware of the dizziness and vertigo as they are hard to ignore! However, I was so engrossed with the production of this amazing musical that I was able to ignore it, and just really enjoy the DVD!
And now I am equally excited for the film version of Les Misérables, starring Hugh Jackman, Russell Crowe and Anne Hathaway among others – and perhaps even planning a trip to the cinema with my Personal Assistant, it will be difficult for me being in the building but I am determined to achieve this feat!
And for that I am ‘chronically’ thankful!
Welcome everybody; am writing this post on a quiet Sunday afternoon. For today I have chosen a short prompt as this particular day I really am not feeling well. I have chosen a prompt from an earlier date. In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts. I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).
Growth can be defined as an increase in some quantity over time. The quantity can be physical (e.g. growth in height, growth in the amount of money possessed). However it can also be abstract or metaphorical (e.g. a growth in one’s personality or psychological development. And it is the former that has based the inspiration for this week’s photograph:
This was a picture taken at the recent ‘Life 4 Living’ Party and the subject of a recent post entitled ‘How Do You Solve a Problem Like…A High Ceiling’ . As you may remember the party took place in a large hall with a high ceiling, which as you may recall is one of my main trigger for severe attacks of vertigo.
Before, my diagnosis my first instinct would have been much more leaned towards the flight part of the flight or fight response and would have left the room. However on thus occasion and whether it is now due to the knowledge of why I was feeling the way I did and why, I managed to stay at the party for the entire 3 hours despite the vertigo and nausea! That’s what I call growth!!
What does growth look like to you?
Sorry for the lack of an update this week – truth be told, I haven’t had the greatest weeks with most of it spent lying on the sofa with the comfort of a quilt and watching endless hours of television (or at least trying to!!) feeling particularly dizzy, weak, nauseous and with frequent episodes of the ‘room spinning’ motion.
It started Wednesday evening and I believe that the deterioration in my condition was due to the afternoon I spent at ‘Life 4 Living’; a local group I attend every week which promotes enjoyment, positivity and friendship. Don’t get me wrong, I love my time at the group, and is something that I really look forward to, however, this week we had a local singer coming to the group to perform and so we left the confines of our usual room to conduct the session in the Day Centre’s Main Hall.
Now as I may have mentioned before that one of the triggers that seem to affect me much more than anything else are high ceilings. The very first dizzy spell I experienced was in a DIY Superstore with vast ceilings and being in a place with high ceilings can bring on an attack of vertigo, causing my vision to become out of focus, balance becomes even more unsteady. I have no idea why these places affect me so much but they just do – if anyone knows any such explanation I would love to know!! The ceiling wasn’t particularly, much lower than what you would find to expect in a superstore for example, but as there was dips within the ceiling itself – progressing from higher to lower and so on just threw me for a loop – as if it was too much visual stimuli for my brain to process!
Unfortunately for me everywhere and every new store that is opening up seems to be big vast and open as well as the problematic high ceilings – as if the world I live in now no longer is fit for me, a lot of places coming out-of-bounds for me and my condition, nowhere being accessible for people ‘like’ me.
My Nemesis!
We had prior warning to the change of venue and knew what it was like in there beforehand so I was able to bring my Mum along for support and to help me if taken unwell. On a positive note, I did manage to stay in the hall for the entire group session (close to 3 hours) but even so I uncomfortable and unwell the entire time, and my balance was really bad also – thank god Mum was there to get me drinks and to help me get my food from the buffet. As much as I did want there, I just wanted to enjoy myself with my Mum whom I do not get to go out with anymore on account with the severity of my symptoms as well as the awkwardness of spending a long amount of time out causes due to the weakness in my legs, and Mum was also looking forward to seeing the singer perform so didn’t want to spoil it for her.
The most embarrassing part came towards the end of the afternoon when coming to leave my legs seized up on me causing me to crash to the floor!! But still a good time was had by all!
And since then, I have really gone downhill, legs weak I have hardly been able to stand and generally feeling weak and lethargic – as if those three short hours just took everything out of me. So here’s to a quick recovery in time for volunteering Monday and especially to the next meeting of ‘Life 4 Living’!!
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 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…
Another day has come upon us…so it’s now the fifth day of the WEGO Health Activist Writer’s Month Challenge. Th prompt for today reads:
Ekphrasis Post…Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!
Ekphrasis is defined as ‘a description of a visual work of art…and is considered generally to be a rhetorical device in which one medium of art tries to relate to another medium dy defining and describing its essence and form’.
Anyway, this is the image that flickr chose for me:
http://www.flickr.com/photos/star_gazer_32/2052442753/
For copyright reasons, I was unable to upload the photograph to the post itself.
So, how would this image relate to my health condition? Well for one, this image really sums up my world how it looks whilst I am dealing with the visual disturbances in my daily life – everything out of focus, and blurred, so not being able to clearly make out objects, people or places, which when they come on can be frightening indeed…
Also, it is ironic that the image that appeared was of a carousel – they obviously go round and round, often producing feeling of dizziness and nausea. Two symptoms which I suffer from every day!! Often, after coming off a carousel or other rides such as these, often leave your legs feeling like jelly, which is a sensation similar I experience everyday with my legs which continuously feels weak and wobbly, as if at any moment I will fall as if my legs are unable to support my weight.
Living with a chronic illness can in many ways be symbolised by the movement of the carousel horses, like the one in the image – up, and down, up and down. Many chronic illnesses, or illnesses which cannot be seen are very often fluctuating condition, so that one day you may be feel on top of the world, have lots of energy… whilst the next day you may be at rock bottom, feeling incredibly unwell, lethargic.
The colours and the lights are that are depicted in the image are problematic for me – strobe lights like these often being on episodes of vertigo and visual disturbances when I am faced with them. So being in the location of the carousel from the picture would probably leave me feeling very unwell indeed!!
The image has evoked a feeling of deja vu in me, as if the image itself describes my everyday life – the spinning of the carousel itself depicting the continuous dizziness and episodes of vertigo. The image being blurred and out of focus depicting the visual disturbances which come and go throughout the day. And the feelings after coming off a carousel reflecting the jelly like feelings in my legs and the weakness in them.
Well, that’s all folks. I hope you enjoyed the post – I myself have found this particular prompt very difficult indeed, and not sure that I have done well with it all. If you have any comments or thoughts, please feel free to share them, i would love to know what you all think
Well folks, April is finally here – the sun is shining and flowers are blooming, Spring is definitely in the air – and of course begins the Health Activist Writer’s Month Challenge courtesy of WEGO Health. A challenge in which I have to write a post for every day in April – being provided with prompts that I have to write about.
Today’s prompt says the following:
Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it.
Okay, so first thing, according to Wikipedia, a time capsule is defined as:
“…a historic cache of goods or information, usually intended as a method of communication with future people…”
Sounds easy, right? However, I have had some difficulty – as my condition is not common and seems to be rare, especially as I have come across very little information regarding it and have not found anyone else living with the same condition as me. Although I take several different medications, none of which really treat my condition or its symptoms, they merely ease the severity of the symptoms.
So, to start I have decided to place a letter intended for whoever happens to find the capsule – a letter introducing myself, about my life, hobbies, interests, and of course, about my condition – the medical jargon, the symptoms and how it affects me and my daily life. Perhaps, also including transcripts of my blog posts to gain extra insight into my condition. My journal would also be a great tool to learn more about me and my condition, one which fully dictates everything I go through day in and day out, as well as thoughts and feelings, pretty much everything about me!!
Also, have included two letters – a referral letter and the other the first appointment to see a hospital consultant. You may be wondering why, but I think it would be interesting as part of social history to compare the waiting lists from the past and the present. What would the people living 2112 think of our waiting times to see a consultant? Would they be shocked at how long they are? This is also of some interest for people living in the UK considering the recent discussions into the reforms of the NHS. Whether the reforms will make any difference to the length of waiting times remains to be seen.
I have also included a visual aid to represent one of the main symptoms that I experience – dizziness. And I have represented the dizziness by placing a spinning top into the time capsule.
Perhaps when the person who opens the time capsule will get dizzy when looking at the toy spin round and round. Maybe then they will be able to appreciate what it is like to live with it 24/7 like myself.
I have placed my degree certificate and transcripts in there – to show that even when living with an invisible and life long condition, it does not have to stop you from achieving something great.
My crutch is something else that is going in. A mobility aid that helps me in my daily life, as my legs are weak and have trouble with balance, it helps (or at least tries to!) maintain my balance and so I don’t fall!!
Another problematic symptom that I experience is due to the spastic paraparesis, causing stiffness, heaviness and tingling sensations in my legs, and of course weakness which often leads to my legs giving way on me. However, this is obviously a symptom which nobody can see, so it lead me to ask how I would represent this in my tine capsule? Then I remembered, a nickname that I was given a while ago – Bambi!! Yes, I have been given a nickname based on the Disney who at the beginning on the film is unable to stand on his legs, falling over as he tries to – not unlike me when my legs are weak and they collapse from under me. So I have placed a cute cuddly toy of Bambi to represent the spastic paraparesis.
And I have also included a butterfly – something that I love to represent me. Love the symbolism of them – that they are free beings, able to go here and there, something that I wish I could do. And of course, they start off as something else and transform into something beautiful. Perhaps, that is what happens when we become ill – that we transform into a better version of ourselves.
So, that is my time capsule!! I think that when someone in 2112 will open this, they will probably be very baffled!! Although, for many years I think I have baffled many doctors as getting a final diagnosis was quite a battle.
Where would I hide the time capsule? Well, it would probably hide it in the vast field near my house – it would be nice that somebody who in the future who’s living in the street where I am now would find it. Can’t imagine that it would end up in a museum or anything, but even if it’s just to educate someone about the complexities of the brain, and the problems associated with neurological conditions, and those conditions which cannot be seen.
Hope you have enjoyed the first post and would love to hear any responses and thoughts you may have, don’t hesitate to comment.
What would you place in your time capsule??
Hey Friends
Me again, for another post to my blog. Hope all of you are OK. I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…
May be down to the deterioration of my condition – the dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances – vision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.
As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning. That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.
Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now. So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception. However, whilst buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently my Dad had to take me back to the car and buy lunch for me. Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.
Later on, had another appointment with the doctor. Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc. And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.” Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future… I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy. But if I need one, then so be it, as there are worse things in life, hey?
I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…
However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t guaranteed that it will work) and also keep me fit and in shape. It is called an Aeropilates Machine - a machine that incorporates pilates exercises with a resistance machine….
AeroPilates 4695 4 Corded Machine and Cardio Board
“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It’s benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‘super charge’ your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”
Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…
