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Weekly Photo Challenge: Wrong

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There are many definitions of wrong.  These include:

a) not in accordance with what is morally right or good

b) deviating from truth or fact; erroneous

c) not correct in judgement, opinion, method, etc

d) not proper or usual;  not in accordance with requirements or recommended practice

e) out of order; awry; amiss

Many people make false judgements based on appearance, colour of skin, race, gender and so on.  Below is a picture of me on a night out:

Looking at the picture you might assume that I am healthy, that there is nothing wrong at all in my life.  However, this would be wrong…

This was taken on a rare night out; usually I am too unwell to go out in the evening; instead putting on a pair or pyjamas and watching television cocooned in my snuggie.  Often my legs are far too weak to be able to enjoy a good night out, too dizzy and sick to sit in a restaurant with lots of stimulation surrounding me.

This is also a problem with the disability benefits assessments; too many false judgements are made; on one occasion where I had failed a medical, the report commented on how I looked well, dressed smartly.  So, does that mean that just because I suffer from a chronic illness and am disabled that I cannot dress in nice clothes and look smart?  Seeing me for approximately 20 minutes which mainly involves sitting down, that made a judgement that I was able to walk a certain distance, where in reality it was completely inaccurate, instead my legs give way and left unable to walk very far.

I think it is an important lesson for us all; not to judge people on a first meeting or just by looking at them – as the saying goes ‘When you assume , you make an “ass” out of “u” and “me”! 

Love to know your thoughts and comments – what does the word ‘wrong’ look like to you?

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Taking Part in a New Project!!

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Hey Everyone

Hope you are all well, sorry I haven’t updated for a few days but again have not been feeling well – some were even spent bedridden as it was so bad, legs feeling so weak and every part of my body feeling so lethargic.  Also, have been quite busy – I have now for a couple of months have been attending a new group within my local area, many of the attendees like myself suffer with some form of disability or illness, or perhaps those who for a number of reasons find themselves stuck in the house alone.  The group, called ‘Life 4 Living is an initiative of the Pontypridd Disability Team, a branch of the RCT Social Services, the ethos of the group being to encourage friendships and for its members to spend time in a friendly, relaxed and fun environment, focusing on how to get the most out of life and to develop a positive attitude to living life to the full despite the circumstances that life has dealt you.

Anyway, recently we have formed what is called a ‘constituted group’ – to make the group more official, and hopefully be able to apply for some funding for trips for all the members – places of interest and fun activities that all members can partake in.  So, to form a constituted group, there needs to be a committee and I am happy to announce they have all voted for me to become secretary!!  So, in the times that I have not been so ill in bed, have been preparing for my new role!

And on to another piece of news…As some of you may remember, I took part in a challenge back in April called the Health Activist Writer’s Month Challenge.  The organisation that ran the challenge is WEGO Health, a fantastic health online community that empowers health bloggers like myself to connect with audiences and each other to spread the word of the health cause or condition that we write about.  Well, they have just launched a brand new project entitled:

It’s called the ‘HealthSecret’ which is based upon a project, PostSecret by a man called Frank Warren whereby people mail their secrets anonymously on a homemade postcard.  So, WEGO Health are asking all health activists or bloggers to mail their secrets to them on a postcard, letter or note – just as long as it gets to them via ‘snail mail.’

They are not even looking for ‘secrets’ per se, they are asking for people to write about themselves, their health condition or health community that affects them and may not be widely known.  It could even be a letter telling others exactly what it is like to live with the condition they have, or even sharing knowledge with people who may have been recently diagnosed.  Basically anything that the health activist wants others to know about their particular health cause or condition.  And with all of the postcards, letters or notes sent in, the people at WEGO Health are going to compile them into a great e-book which you can sign up for here 

So, I think this is a wonderful idea, and gets us all to be a little creative and to spread the word about out particular health conditions – I personally love handwritten mail, they just seem so personal and a sense that a lot of time and thought has gone into writing it and I am looking forward to sending in my contribution.  I have even bought a new writing set especially for the project!!:

So, if you are someone perhaps with a condition which is uncommon or perhaps one which is misunderstood by the general public then get involved in HealthSecret and shine a light on the truth as it is for you!!

You can send all letters, postcards or notes to:

WEGO Health

180 Lincoln St.

5th Floor

Boston

MA, 02111

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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 7: ‘In a Perfect World’…

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Hello Everyone, me again!  Time for Day 7 of WEGO Health Activist Writer’s Month Challenge.  Today it is up to the Health Activist to choose what to write about.  So, I have decided to have a look at the bonus prompts that were given to us at the start of the challenge:

In a perfect world…Wrote about one thing you wish you could change.  It can be in your own life or the world at large.

So, I though I would choose ‘world peace’ but though that would be too obvious!

As my blog is about my daily struggles with my condition…I would obviously choose to change so that I would not have to endure the daily symptoms or the struggles that I have to face.

It would certainly make my life so much easier, I would be able to have so much more independence and would not be a burden on my parents or family.

I remember when I was younger, approximately 15 or 16 I was so excited and looking forward for the time when I would be able to start driving lessons.  I would imagine how exciting to would be to pass my driving test and then having my own car – being able to take myself off and going where I wanted, anytime I wanted.

In addition, after finishing my psychology degree, I originally wanted to work within the mental health sector, perhaps as a support worker for those suffering with psychological disorders.  However, in recent years emphasis has been placed on community care and away from hospitals.  Therefore, this means that the majority of jobs in the field require employees to visit people at home, and so is now a job that requires being able to drive or at least the ability to use public transportation.

However, due to the condition that I have – and the constant dizziness, as well as the unpredictability of the vertigo and visual disturbances that I experience, it means that I am not allowed to drive as it would be too dangerous for me to do so…and due to the spastic paraparesis, the weakness in my legs, and due to the fact that they very often give way with no warning and I am unable to stand for very long, would make it near impossible for me to be able to use public transportation and walk long distances to visit people in their homes.

Not having this condition, would also make it much easier to be able to make friends – and keep the ones I have made.  This condition, and the dizziness that I have endured for so many years, have made it so difficult to make and keep friends.  At school, I was often ostracised from my peers as many often thought I was strange.  And even at university when I did make friends, they have not stayed in contact, although I do not know the reason why, it more than likely is due to my condition due to the fact that the dizziness makes it very difficult for me to go out to places, such as large shopping centres or to nightclubs due to the way that they make me feel and how they can bring on episodes of vertigo.  Unfortunately, these places are incredibly popular with my age group and where most people my age want to go when going out with friends.

I have tried to make contact with those who I were closest to at university but none have made contact… So, it seems at the moment I lead a very lonely existence, sure I have my parents, but would be nice to be able to spend time with other people, or even people my own age.

It also incredibly difficult leading a normal life with the spastic paraparesis…especially as I am unable to stand for very long – no more than around 10 minutes,  This obviously causes a problem when thinking about going shopping, hence the reason why I still live at home, as Mum and Dad are able to do the majority of chores such as food shopping, and the like.  And if I do go out then I have to take regular breaks, such as going for a drink so am able to sit down – making it an expensive trip out!!

Also, causes a problem with being able to perform chores effectively – I have to regular breaks and sit downs when I have chores to do, making it take twice as long to do.

Therefore, I would choose to change the dizziness and spastic paraparesis so I would be able to live a normal and more to the point a life that I would want to live….

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