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Did you Know?…

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Did you know that September 10-16 is ‘National Invisible Chronic Illness Awareness Week’?  Well, it’s based more in America, but still there are plenty of ways that people living in other parts of the world can participate – there are even going to be online virtual conferences to learn more about invisible chronic illness and connect with others.  To learn more about ‘National Invisible Chronic Illness Awareness Week’, you can visit the website at:

National Invisible Chronic Illness Awareness Week Homepage 

As part of the Awareness Event, those running the event have shared ’30 Things’ Meme to share with others what it is like living with an invisible chronic illness – especially as many often exclaim “Nobody understands me!”  This therefore, is an excellent opportunity to educate others so that people will learn to understand!

THINGS YOU MAY NOT KNOW ABOUT MY CHRONIC ILLNESS 

So here is my ’30 Things about my Chronic Illness’…

1. The illness I live with is…  Long-Standing Brain Stem Lesion and Spastic Paraparesis

2. I was diagnosed with it in the year… 2010

3. But I had symptoms since… The stiffness in my legs I have experienced since I was born although due to no diagnosis and no awareness that there was something wrong always thought it was normal!!  The dizziness and vertigo began around the age of 8

4. Te biggest adjustment I’ve had to make is… Learning to pace myself, take regular breaks to sit down so that my legs do not give way.  For example, do chores in small chunks whereas I preferred to complete them all in one go before my symptoms became worse

5. Most people assume… That because I look ‘normal’ that I must be healthy, whereas the reality is that I often feel extremely unwell, the dizziness being constant and often feeling incredibly nauseous and weak

6. The hardest parts about mornings are: The incredible weakness and fatigue that I feel, sometimes it feels as though I haven’t had any sleep at all

7. My favourite medical TV show is… It has to be ‘Grey’s Anatomy’ – would be much more fun attending hospital appointments if all doctors were as good-looking as they are at Seattle Grace Mercy West!

8. A gadget I couldn’t live without is… Has to be between my iPhone or the Life Line alarm I have had installed – due to the weakness in my legs it means they often give way and so have a significant number of falls and so with these gadgets it means that I can easily reach somebody to help me.  The iPhone also helps me keep connected with others when I am too unwell to get out of bed to go on the computer

9. The hardest parts about nights are: When the dizziness is so bad that I cannot get to sleep, sometimes it has been so bad that I have had nights where I have had no sleep at all

10. Each day I take __ pills and vitamins… Every day I take 5 pills (sometimes more when the vertigo is severe I took one to help stop it and ward off nausea)

11. Regarding alternative treatments I… Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms

12. If I had to choose between an invisible illness or a visible illness, I would choose… An invisible illness could be more positive in the way that people are more likely to treat you as everyone else

13. Regarding work and career… I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time

14. People would be surprised to know… Despite all my problems I still like to give back to the community and volunteer my time at a local mental health resource centre, which allows me to help out in any way that I am able.  It’s much flexible than a paid job, as if I am really unwell there is no pressure on me to attend

15. The hardest thing to accept about my new reality has been… I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time

16. Something I never thought I could do with my illness that I did was… Probably graduating university and attaining a degree in Psychology.  It was a lot of hard work and draining physically but had a lot of help from the University itself to be able to achieve this

17: The commercials about my illness: There are none really as it is rare; have not met anyone else with the same condition! I would say that it is quite similar to MS

18. Something I really miss doing since I was diagnosed is… Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way

19. It was really hard to have to give up… Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being

20. A new hobby I have taken up since my diagnosis is… Using an exercise machine called ‘Aeropilates’ it gives me the opportunity to take part in cardiovascular exercise whilst lying down without worrying about suffering any falls.  Another hobby is writing this blog, something I wouldn’t have done if it wasn’t for the illness

21. If I could have one day of feeling normal again I would… Go on a big shopping spree!

22. My illness has taught me… As I was misdiagnosed with suffering from anxiety before being diagnosed with the neurological condition, I therefore have learnt that doctors are not always right and that if we feel that there is something wrong than we should find an understanding doctor who listens

23. Want to know a secret? One thing people say that really gets under my skin is… “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!

24. But I love it when people… Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.

25. My favourite motto, scripture, quote that gets me through tough times is: “Every day not be good.  But there is something good in every day” – So true!

26. When someone is diagnosed I’d like to tell them: It is not the end.  You still have a lot to offer just need to be open to new opportunities

27. Something that has surprised me about living with an illness is:  Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times

28. The nicest thing someone did for me when I wasn’t feeling well was: Sending me a lovely present in the mail to cheer me up.

29.  I’m involved with ‘Invisible Illness’ Week because: To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship

30: The fact that you read this list makes me feel: Positive and that I have helped the cause; and that I have successfully made people more aware of the impact of invisible chronic conditions.

Thank you for reading my answers to the questions!  I would love to know your thoughts on any of the subjects raised by the questionnaire.  Please feel free to add any comments below.  If you would like to connect with me privately, you can now email me at the following email address!:

brainlesionandme@gmail.com 

 

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HAWMC Day 21: Health Madlib Poem

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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…

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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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‘Miss April’…

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In the madness of the Writer’s Challenge that I have been taken part in that I have forgotten to mention that a very special friend of mine who has her own blog is completing a special project for her blog abledis.com.   Marissa, like myself suffers with chronic dizziness, and was diagnosed with a debilitating vestibular disorder and set up her website “with the intention of documenting my life living with a hidden disability”.  For those who aren’t familiar with vestibular disorders, they are defined as:

“…a disturbance that causes an individual to feel unsteady, giddy, woozy, or have a sensation of movement, spinning or floating.  Balance is the result of several body systems working together: the visual system (the eyes), vestibular system (the ears) and proprioception (the body’s sense of where it is in space).  Degeneration of loss of function in any one of these systems can lead to balance deficits”

The project is called ’12 Months, 12 Journeys, 12 Lessons’ and where she is educating herself about a different medical condition each month.  So far, Marissa has featured spinal muscular atrophy, budd-chiari syndrome and multiple sclerosis.  And this month I and my condition, long-standing brain stem lesion and spastic paraparesis is being featured.  The page featuring me, with a list of the posts related to my condition, can be found here:

http://abledis.com/12-12-12/rhiann-johns

As part of this incredible project, I will also be taking part in a podcast interview with Marissa which will be available to listen to near the end of the month!  Each month Marissa is truly being an advocate for the project member and the condition being featured by wearing a t-shirt and a wristband to various medical appointments to show her support and raise awareness for the cause.  As you know, my condition is very rare, and so were no organisations or charities that we could find to reflect my condition, so Marissa had a t-shirt made instead! And somehow, we were able to find a website that had wristbands (silver) to support various brain disorders. Here they are:

Anyway wanted to let you all know about this incredible project, and I hope you all support Marissa and all of her hard work by visiting her website and having a look around and learn all about her health condition as well as those project members being featured.

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