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spastic paraparesis

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In Chronic Illness

My Life…My Truth

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You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…

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12-12-12 Project: Interview with Me!

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Image: http://abledis.com

I think I have previously mentioned that I was taking part in a fantastic project entitled the ‘12-12-12 Project: 12 Month, 12 Journeys, 12 Lessons‘ over at my great friend Marissa’s blog, Abledis.

As part of the project, Marissa featured my condition – long-standing brain stem lesion and spastic paraparesis on her website, learning all about it, and the effects it has on my life and so on.  Also, Marissa asked me to complete a podcast interview with her about my health condition and life, which we completed last week, and is now up for everyone to hear.  You can find the podcast here:

April Podcast Interview: Rhiann Johns

And there was also a special guest featured!!  Who? You’ll have to listen to find out!!

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HAWMC Day 27: 5 Challenges and 5 Small Victories…

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Welcome Everyone to another edition of ‘My Brain Lesion and Me’.  A new post for a new day of the WEGO Health Activist Writer’s Month Challenge, in which I have been writing a new post every day throughout the month of April.  Today’s prompt reads the following:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going.

My 5 Challenges:

  1. The fact that the condition is invisible, unable to see the suffering that I go through or when everyone presumes that I am healthy because I look ‘normal’.  Especially when going to see doctors and consultants, sitting there and having to justify why you have taking up an appointment to see them as you look fine and healthy.  Having some doctors not believing the symptoms that I am experiencing are real, and using the “it’s all in your head” excuse when they can’t find an explanation for the symptoms
  2. Not being able to make plans – It’s very hard living with a condition which fluctuates between ‘not  feeling too bad’ and able to function on some level and ‘feeling absolutely terrible’ and being hold up in bed, feeling as sick as a dog! And as I am unaware of how I am going to feel on a particular day or not knowing when symptoms are going to arise, it makes it so difficult being able to make definitive plans on going anywhere.  Am unable to book those tickets to see a concert that I want as I do not know how I will feel on that day, and so on.  And as you cancel plans on going out with friends, they soon stop calling and asking, and then are left with feelings of loneliness and isolation, even as if your friends are ostracising you, as if your condition is somehow contagious.
  3. Not being able to leave the house unaccompanied due to the risk of injury or the onset of an attack of vertigo.  This is particularly hard, especially as friends have come and gone in my life, which only really leaves my parents taking me to places where I may want to go or need to go.  And of course they both need to work, leaving me the majority of the time being stuck in the house alone, lonely and depressed without company.
  4. The weakness and unpredictable nature of my legs – As I have previously mentioned due to the spastic paraparesis, my legs are incredible weak and tend to collapse from under me with no warning, and also means that I am unable to stand for very long.  This means that if I am going out anywhere, it can really only be for only a short period of time, or if I am going out for a while for any reason, I need to take regular breaks to sit down in case of a fall and to prevent an injury occurring.
  5. Being reliant and a ‘burden’ on other people.  I would love to be much more independent and being able to do much more things for myself.  There are so many ambitions and little things that I have wanted to achieve such as passing my driving test, which I am unable to do because of the condition.
My 5 Small Victories:
  1. The friends that I have made on Social Networks such as Facebook and other support groups.  These amazing people have really kept me going through the dark and painful times in my life.  I live for the meetings on Skype, where we discuss our conditions and how we are feeling, picking those up when they are down and celebrating our achievements.  They have become like a second family to me, and are all amazing and special people. It’s also amazing to have people there who can relate and know what I am going through and reminds me that I am not alone.
  2. Being able to achieve little goals such as doing some chores around the house for my Mum, or doing a little bit of cooking for myself, is at times a major achievement for me as I often feel so unwell, and often having to battle through especially when I have the tremors in my legs, making it so difficult to stand.  And is also a great reminder that even though I do have a disability that I still have skills and other things that I can offer.
  3. Going somewhere new without any problems is sometimes a major victory for me, especially as I often feel anxious about going somewhere new, not knowing what it’s going to be like there, as particular features such as high ceilings, or particular lights can set off an episode of vertigo.  It also creates anxiety as even if it hasn’t any features which I find triggers vertigo, I still am unable to determine how I am going to feel once I’m there, or if my legs are going to collapse from under me leading to a fall, which can be very embarrassing in public places with everybody looking.
  4. Completing voluntary work every week is a small victory that I can say that I have achieved.  Even if I feel relatively unwell, or am having troubles with my legs I still am able to push through to go to the Resource Centre, where my voluntary placement is based.  It provides myself with the opportunity to leave the house for a few hours every week, being able to talk to new people, and being able to make themselves feel good about themselves or helping them in some small way is fantastic and again is a great reminder that I still have things I am able to offer.  It can also be a great way to forget about your own troubles for a while, and to focus on others can be very uplifting.
  5. My major accomplishment that I have achieved has to be completing my degree in Psychology.  Having the problems that I do, made it so much harder to achieve – but I still managed it.  Just goes to show that even with a chronic condition as myself doesn’t have to stop you from achieving something that you want from life – I’m unable to drive or even learning to drive but gaining a degree is something that I CAN achieve!!
This has been a great prompt – and has been a great way of thinking differently about my condition and the ways in which it affects me.  The Small Victories section and was great at being able to think positively and ways in which we with health condition such as myself can still contribute in the community at large.  Thank you WEGO Health!
Again would love to hear from you all regarding your thoughts.  What are your Challenges and Small Victories in life?
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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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