A Look Back at 2012…

New year 2013

Hello to you all, I hope your Christmas and New Year went well, and you all managed to enjoy yourselves.  Now 2013 is upon us, I thought it would be a good idea to take a look at last year…

Well, firstly 2012 saw the deterioration in my condition and the symptoms which affect me: the dizziness became much more intense as well as becoming constant.  As well as this, the weakness in my legs became worse, and thus saw me needing to start using a wheelchair, as the weakness left me with an inability to stand for shorter periods of time.

However, although last year, saw a deterioration in my symptoms there was still a lot to be thankful, including the following:

  • The creation of the blog; gaining a lot of new friends and contacts within the world of chronic illness 
  • Taking part in the wonderful 12-12-12 Project hosted by the wonderful Marissa over at abledis.com 
  • Having two articles published online; one for ‘Invisible Illness Week

rhiann_12_12_12

  • Joining the wonderful group ‘Life 4 Living’ in which I became the group’s secretary; giving me a sense of pride and purpose 
  • Can’t forget the two nominations I received for the blog as part of the WEGO Health Activist Awards!!  Thank you for whomever nominated me and the blog
  • Receiving help from Social Services to help me manage the condition, as well as being able to employ a personal assistant to help me get out of the house more!

I just wanted the opportunity to show people that although many of us, battle everyday with chronic illness, it does not mean that our lives need to be full of negativity and despair, but instead there are many positives that can be as a result of said illness.  I recently bought myself a gorgeous print from a local artist, which sums this up beautifully:

 

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The quote says: “Just when the caterpillar thought the world was over…it became a butterfly”

A problem shared…

Welcome to another blog post from ‘My Brain Lesion and Me’!

This month, the folks at WEGO Health are concentrating on ‘Health Activism in Real Life’.  So, instead of the focus on being on online support groups or on those like me who blog regarding a particular health condition or cause the focus is instead on those organisations or even on specific people who use the more face-to-face approach to health activism.  This could include any of the following:

  • Non-Profit Organisations, i.e. charitable organisations
  • Support Groups
  • Meet-Ups with fellow patients
  • Awareness Events
  • Conferences focusing on health conditions or causes

So, I thought that I would share my thoughts and views on this topic and its role in providing support to those who are dealing with chronic illness or disabilities.  Now, I have found great comfort in online support regarding my own health condition and subsequent disability – the internet has made it possible for me to forge friendships and a strong support system with people who may not have the exact same condition as me, but who are nevertheless exhibiting similar symptoms that I face every day.  Without the internet, it would not have been possible to speak out about my condition, increasing the awareness of my condition and what it is like to live with through the 12-12-12 Project over at Abledis.com.

 

Without the technological advances that are available at our fingertips – the computer, smartphone, tablets and so forth I am afraid that I would probably live a very lonely existence indeed, stuck in the house constantly with only my parents and the dog for company.  So, the internet and the support networks available are such a godsend for thousands of people out there who are housebound or who are unable to get out as often due to their health condition, giving the ability to be able to connect with others and not feel so lonely.

 

However, this isn’t to say that there is no place for the offline, there are many non-profit organisations out there that are doing a fantastic job in providing and support for patients or service users, advocating them in times of problems and providing an ear for them when they are struggling.  I myself volunteer for a great non-profit organisation providing support for those living with mental health difficulties, called Mind and the support they provide for people and the others services that they provide.  Not only that but it provides a safe, comfortable environment for people to make new friends and talk about their problems and experiences without judgement or criticism.

 

There are times when I just wish that there was a support group out there for people like me, experiencing a similar condition to myself where I can get support, advice and make connections with others – but there just doesn’t seem that there are any organisations or non-profit charities that my particular health condition and situation really ‘fit’ into.  Even searching on the internet hasn’t helped!!  But have started going to a new group, although wouldn’t class it as a support group more of a group for ‘meeting-up’, learning about different topics and hopefully going on trips around the local area.  It as been great for me – enables me to get out of the house for a few hours (something I can’t do with online groups!) and chat and meet a wide range of different people, most of whom living with a chronic illness or disability.

 

So, I am starting to get the best of both worlds – using the online and offline resources for health activism and both definitely have their advantages and disadvantages but still both are equally valuable in providing patients, carers and other people involved within the health community to share personal stories, gain knowledge, connect with others…

So, which of these do you prefer – using the online for health resources and enjoying the privacy and anonymity it provides or do you prefer the more personal touch and connect with others face-to-face, enjoy getting to know others on more of a personal level?  Would love to hear your views on this topic!!….

12-12-12 Project: Interview with Me!

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!!

‘Miss April’…

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.