To dream of the future…

As most of you know, each Wednesday, I attend a group called ‘Life 4 Living Pontypridd.’  The group is a social one, which promotes positivity and friendship among its members.   The focus of the group is to promote people’s strengths and enjoy life despite one’s own personal circumstances.  One such way, to promote a positive outlook, we have been asked to devise a ‘Bucket List’ – a wish-list that one would like to achieve before they ‘kick the bucket’, or in other words die!

 

 

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It is thought that the phrase derives from the Middle Ages, when execution by hanging, consisted of a noose being tied around the neck whole standing on an overturned bucket.  When the said bucket was kicked away, the victim would hang until dead, hence the phrase “kicking the bucket”.  The term has recently been popularised, by a film starring Morgan Freeman and Jack Nicholson, of the same name, about two terminally ill men meeting at a hospital, and devises a wish-list of to-do’s before dying, which they attempt to complete together on a road trip.

 

 

The film 'The Bucket List' has popularised the idea of creating such lists of things to do before you die!

The film ‘The Bucket List’ has popularised the idea of creating such lists of things to do before you die!

 

 

Initially, the idea of a such a list sounds morbid and depressing; seems to be planning the end of your life, instead of living life whilst we still have it.  It suggests a “check-off the boxes” approach to life; sitting round waiting to die.   However, isn’t the phrase more to do with living than dying?  Wouldn’t completing items on such a list make life more meaningful and memorable.  Those memories, are not only positive and meaningful for the terminally ill person, but will also live on after they have gone, by those left behind who were also part of the experience.

Now, the condition with which I live, is obviously is not terminal, and more than likely be around for many more years to come.  In this case, the phrase ‘Bucket List’ is misleading.  How many of you, have such wish-lists?  Would your imminent death, really the main motivational factor in creating one?  The majority of people, I am sure would say no.  Perhaps, it is important, however, for people with chronic illnesses to create such lists in order to accomplish personal ambitions, before the illness prevents them from doing so.  Perhaps, by creating such lists, would provide those with chronic illness with experiences that they can look forward to, whilst they are dealing with horrible, debilitating symptoms, and through treatments that can feel worse than the condition itself.  Whilst studying Psychology at University, I learnt about the importance of goal-setting.  Such goals can motivate us to accomplish items on such wish-lists; and furthermore the most motivating goals are those which are hard and specific, although it does need to be coupled with steps to achieving said goal, but writing a ‘bucket-list’ is the critical first-step.

One of the things, that is on my personal ‘bucket list’ is to someday visit Italy, and I am pleased to say, that my parents and I have booked a cruise for next year and one of the countries we will be visiting is Italy!!  Of course, there is much trepidation on my part surrounding the trip, especially giving the deterioration in my symptoms.  However, it has also given me something to look forward to in the future; even on the days where I have been confined to my bed due to uncooperative legs, it has given me something to smile about and aim for.  It has given me something to think about other than illness, and hospital appointments.

It has really put a pep in my step!

 

 

 

What would you add to your Bucket List?

What would you add to your Bucket List?

 

 

What are your thoughts regarding ‘bucket-lists’?  Are you for or against?  What would you put on your bucket-list?  As ever, I would love to hear your thoughts, so feel free to comment below!

How do you solve a problem like…a high ceiling?

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’!!

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!!….

Taking Part in a New Project!!

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