WEGO Health Advocating for Another Carnival: Wrap it Up!

Welcome to the final post of the WEGO Health ‘Advocating for Another’ Carnival!  Hope you have all enjoyed the posts of this special week-long blog carnival.  I welcome any comments that you may have and now you can also contact me via email, or even on Facebook, Twitter, Pinterest or even Google +

The last prompt of this carnival says:

Put a bow on our Advocating for Another week by sharing what you’ll plan to do going forward.  Free write or choose one of the bonus ideas…

So, what next?  Well, I am certainly going to continue with the blog – writing about life with this condition, problems and the truths behind living with an invisible illness and spreading awareness to others about the reality of invisible illnesses.  I am hoping to continue my work by blogging for the Invisible Illness Awareness Week.  And will take advantage of every opportunity to write that I can, from upcoming WEGO Health projects to the Invisible Illness Awareness Week – they all provide excellent opportunities to blog and spread awareness as well as providing brilliant inspiration on what to write.  The prompts and ideas often challenge us as writers’, often making us better storytellers and writers.

Will also continue using social media along with the blog – Facebook and Twitter to connect with others and hopefully making new friends along the way!

And in my private life, I am hoping that the group I am involved with will continue to grow and thrive, and am looking forward to the new opportunities that will present itself as secretary of the group – we already have so many great plans for the group.  Along with that I will also continue my work as a volunteer and now have been lined up as a potential tutor for courses as well as being asked to produce a newsletter for the Centre.

And all of this whilst trying hard to maintain my health and keeping as well as possible!

WEGO Health Advocating for Another Carnival: Letter

Welcome to the penultimate post of the WEGO Health ‘Advocating for Another’ Carnival.  Hope you all have enjoyed the posts so far.  Today’s prompt reads as follows:

Write a letter to your community and share a story of your own with them.  Extra points if you record yourself reading the letter telegram style! 

To those within my health community

I would first like to say thank you to all of you who have supported me and sent me messages during the bad times and shared my joy during the good.  Would also like to thank you for your friendship and kind words that you have written to me, and becoming a part of my ‘online’ family.  You are all unique and special, and although we all have difficulties and feel that we are unable to do certain activities, one thing that I have learnt and would like to share with you, is we all have something of valuable to offer.

It has taken me a long time to realise this, but is of something of value that I would love to share.   As most of you know, I regularly volunteer one day of my time to help at a local mental health   resource centre.  Recently, the Centre held an Open day and was looking for volunteers to go out with a collection bucket for monetary donations.  As I have significant weakness in my legs, I was unable to go out with the other volunteers in case my legs gave way.  However, I came to realise that although I was unable to volunteer in this way, there were plenty of other ways that I could help out.  For example, I am able to:

  • sit down and help make sandwiches and refreshments
  • with my crutch am able to go and greet people at the door and welcome them inside
  • during the Open Day itself I was on hand to give the ladies a pampering session with hand massages and painting nails
  • sit down and talk to the visitors

Often on the days I volunteer, I have started to even help deliver some of the courses that the Centre offers such as those on Stress and Anxiety Management – and is great seeing service users leaving these courses more confident and happier than when they arrived!  So, if some of you are reading this and thinking that due to circumstances you are unable to do this or that, than I am sure it is not sure, and even if it requires some deep thought, there might be ways around the problem.  A solution that makes it possible for you to achieve whatever it is you want to do.  And am sure that there are lots of ways that you are able to help organisations and volunteer your time.   After all we all have a variety of skills to offer!

From

Rhiann x

WEGO Health Advocating for Another Carnival: Quote, end Quote

Welcome to the sixth day of the WEGO Health Advocating for Another Carnival Blog! And thank you for all your support and kind messages thus far.  Today’s prompt reads as follows:

Let someone else’s wise words inspire you.  Find a quote that moves you in some way then free write about i.  Don’t stop writing for 15-20 minutes.  Now post! 

 

The quote I have chosen for this prompt is:

 

I found this quote whilst browsing on Pinterest on a day where I was feeling particularly bad, lying in bed, bored and feeling utterly miserable due to the severity of my symptoms – than I found this and it just spoke to me almost immediately.

Anyone reading this who is also battling a chronic illness everyday knows how it can often get you really down mentally, as well as suffering physically.  It can be so easily to just give up, and just stay in bed, rolling up in a ball and giving up on life.  But although this seems like the best option, it isn’t going to solve anything.  Even though it can be very tough sometimes, we have little choice but to battle on and live the best life that we possibly can and to find our own happiness.  After all, studies within the field of positive psychology have shown that those patients who are happy and are positive in their outlook report less severity of symptoms and are often more physically well than those who are negative in their outlook.

And the quote also fits in nicely with the idea of a ‘gratitude diary’ that was suggested by a social worker who runs a local group which I attend weekly.  The idea of a gratitude diary is to write between 3 and 5 things (or more if you wish) that you were grateful for and what makes you appreciate life – it could be anything from speaking to a friend on the phone, or going out for coffee with a friend to simply grateful for still being alive!  It really is up to you!  The idea of the gratitude diary is to strengthen emotional resilience and reduce stress, as well as teaching the mind to find the positives in a situation instead of dwelling on the negatives.

I have written a gratitude diary for a few weeks now, and it really does work!  And it makes me more happy picking the positives of my day, and those activities that I have enjoyed and instead of dwelling on how bad I have felt because of my symptoms.

As I often experience tremors in my hands, I was recommended a great website in which after you sign-up you receive an email every night at the same time asking what you were grateful for.  And then you simply reply to the email and all of your responses are then saved onto the website, and whenever you feel sad or ‘down in the dumps’ you can log-in and read all of your entries.  And best of all it’s completely free and all of the responses can only be viewed by the account holder.  To find out more go to:

www.happyrambles.com 

Hoped you all enjoyed the post – and feel free to reply with any comments…

WEGO Health Advocating for Another Carnival: Once Upon a Time…

Welcome again to another WEGO Health Advocating for Another Carnival, it’s the fifth day and the prompt is as follows:

It’s storytelling day! Write a story about yourself, your community as though you are a children’s book author.  Be sure to include a beginning, middle, and end.  Extra points for illustrations! 

I love this prompt! It’s really different and am sure it is a style of writing us health activists haven’t tried before.  It seems to be a lot harder than it sounds but here it goes…

Once upon a time in a large kingdom called Wales there lived a young princess named Rhiann.  Rhiann was a very lonely princess, nobody understood her as she had an invisible illness meaning she was unwell but nobody could see what was wrong.  This was due to a problem with her brain, a problem no-one else in the kingdom suffered from.

As no other person could see why the princess was so unwell, many of the servants and commoners were suspicious of her assuming that she was inventing the illness to gain attention.  This made the princess so very lonely, and isolated, her only friend being her trusted dog named Honey.

One day, along with Honey, Rhiann went for a walk in the forest where she came upon a little cottage.  The curiosity got the better of the young princess and she stepped inside, “Hello?” she cried out.  Then a mysterious looking witch came into the light “Yes, princess?” she replied.  “Hello, my name’s Rhiann and I just happened to come across the cottage, I’m awfully lonely and was hoping to find a friend.”

The old witch stared at her in wonder, “Yes, my dear Princess, I have heard all about your troubles, and I have something here which will solve all of your problems”.  The old woman gave her a mysterious looking box, which looked very much like a large book. Rhiann opened this book, and instead found a screen with a board with keys, one featuring each letter of the alphabet, as well as numbers and other symbols.

“Thank you so much” the princess cried out, running out of the cottage, Honey behind her, determined to get back to the castle as soon as possible to try out the mysterious object.  As she arrived, Rhiann headed straight to her chambers, settling the mysterious object on her bed.  After studying it for several minutes, the princess found an on button – and she was soon transported to other worlds on the screen.  This thing she was given, according to a note that was attached to this object by the witch, was called a laptop, in which she was able to explore the ‘internet’ – a portal which could take the princess wherever she wanted to go.  The witch also gave instructions on how to use the internet as well as giving her addresses in which she could go on to make friends.

The princess desperately typed and typed these addresses on the laptop and whoosh, she found everything she could wish for.  She found a place were there were a lot of different people with a variety of different medical conditions.  She chatted for hours and hours with these people, talking about a lot of different things.  And she found that these strangers, accepted her for exactly who she was with no judgement.

And as the months and years passed all of these new people became her good friends and the princess was never lonely again.

THE END

So, what do you think of my attempts at writing as if I were a children’s book author?  I wrote this as if I were the main character – and the loneliness and isolation ‘the princess’ felt was the same feelings that I have had for many years, the feeling that you are not accepted.  That was until, like the character in my story I became active on the internet, especially within the health community as since then I have had the pleasure of meeting a lot of people who have accepted me for exactly the person I am, and I am blessed to call them my friends.  This is dedicated to all of them.

WEGO Health Advocating for Another Carnival: Surprise! Bet you didn’t know…

Welcome to the fourth day of the WEGO Health ‘Advocating For Another’ Blog Carnival.  Today’s prompt is as follows:

Today’s post theme is all about the reveal.  What’s something people would be surprised to know about your life as a health activist, your community, or condition.  Uncover it and elaborate upon it in a stream-of-consciousness style. 

In my day-to-day life I am not aware of other people’s perceptions or their personal thoughts regarding my life, health community or even my condition – it is often the elephant in the room – the topic that nobody wants to discuss as they may feel awkward or simply do not want to pry.  People often stare at my crutch, but do not ask me any questions on the reasons why I might need ir, looking at me suspiciously as if I am only using it to exaggerate my condition for disability benefits.

However, reading articles in magazines and from some replies from others after they have asked me how I am with the typical “That sounds awful, it must be so terrible living like that”; it seems people assume that living with any chronic illness or disability must make life completely miserable and living with one mean we all must be absolutely depressed all of the time; unable to have fun and enjoy life.  However, as we health activists and patients know that this isn’t the case at all; humans are resilient and can withstand a lot more than we think we can cope with!

The perception of chronic illness

And although many of us, have to cope with a chronic condition; with unpleasant symptoms everyday we are still able to enjoy life.  I think living with a chronic condition actually makes people appreciate life more than those who are healthy, taking pleasure in simple things – for example I love having my nails painted, I find it relaxing and enjoyable, picking bright colours to cheer myself when symptoms have been bad.  Also enjoy watching comedies; and always laugh with the jokes. Although I often feel unwell with the symptoms associated with my condition, I still make an effort and enjoy volunteering with a local charity and have even recently helped during an Open Day to advertise the Centre, pampering the ladies with hand massages and painting their nails – felt great putting smiles on other people’s faces!

 

One of my favourite comedies

It makes me sad when I read stories in the newspapers regarding ‘benefit cheats’; and how people assume that when people have been spotted out having a great time then they surely must be cheating the system.  Just because someone is ill or suffers with a disability does that mean they should no longer enjoy life?  Should they simply shut themselves away and wither away?  We should be able to go out and have a great time during the times of respite from our symptoms without judgement and criticism.

WEGO Health Advocating for Another Carnival: Challenge Accepted!

Welcome to the third day in the WEGO Health  Advocating for Another Blog Carnival.  The prompt given was the following:

Leading a community isn’t all sunshine and ice cream – it’s hard.  Write a post that delves into the 3 challenges that you face as a Health Activist

This is a really interesting post, one, which really makes us, reflects upon our role – probably not something that we really think about.

 

One challenge that I particularly face, especially when one considers it is a rare condition – is simply by trying to find an audience for my blog.  Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself.  As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

 

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease.  But still the question remains whether my blog is helping and making a difference to others.  Do I have something of value to add and share with whole health community?

 

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell.  A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity.  Us health activists need to attempt to learn to balance our lives – health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

 

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well that it is not always the reality.  And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful.   Some examples of things NOT to say to a person with an invisible chronic condition are:

  • “It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
  • “It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
  • “You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating.  For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others.  For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
  • “Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is

And there are many more!!  Can you think of others that people say to you which are not helpful?  Please share them with us and perhaps I can do a follow-up piece on the topic!

 

 

WEGO Health Advocating for Another Carnival: These are a few of my favourite things!…

Welcome to the second post in the WEGO Health Blog Carnival. Today’s prompt says the following:

List time! Write 5-10 of your favourite things about your health community. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

Today’s prompt asks us to reveal a few of our favourite things regarding our health community in a Sound of Music style!

What would be some of my favourite things regarding my health community as a whole?

Well number one would definitely be that I feel the community that I am a part of is that the people are much more understanding and less judgemental. Living with an invisible chronic illness makes you far more understanding of others and their circumstances, and less judgemental of certain behaviours or symptoms exhibited which healthy people may see as being odd. This is a really positive attribute not only for health activism but for life in general. And I believe that living with a chronic illness also teaches tolerance. Often people are suspicious and fear those who are different to themselves, those who are not congruent with the image that one holds of themselves. However, those who are chronically ill or disabled are brought together with an understanding of the difficulties experienced and which cannot be broken by those which more commonly divide – such as colour of skin, race, nationality, gender and so on. We are our own community, our own little family.

Another thing I love about the community is having to use time effectively – I used to procrastinate all of the time, always putting off chores until tomorrow. But now, as I never know how I will feel from a day-to-day basis I need to complete chores or tasks that need to be done when they arise, as I may not able to do them tomorrow. Also, comes in handy when I am able to go shopping – hated those days when Mum and I would spend endless hours trawling through different stores. This for me, and many others is now longer an option, so now am only able to go in and get what I need as quickly as possible, not wasting any time and not depleting my minimal energy. Then I have more time to spend on the things that I love (and able to complete without pain or fatigue) such as reading, writing, or simply watching my favourite feel-good film. Having time for ourselves is so important when living with a chronic health condition, important for our psychological well-being and great to do something that we enjoy during periods of remission or feeling well.

Another thing I love about my community is how everyone now embraces technology and social media. These new technologies and social media sites such as Twitter and Facebook, allows us all to stay connected with each other, posting comments of support through the bad times and send congratulatory messages during the good times. Many people assume the Internet is used for bad, and is a force for negativity and evil, such as ‘trolls’ sending messages of hate to others. However, the Internet can be used for good, it can be a positive form of communication. For me, and many others within the health community, going out of the home proves to be very difficult and so using the internet and the different social media that exists as well as support forums makes it possible for much-needed social interaction. And has an even more beneficial use if you take into account rare conditions such as mine, in real-life it may be very unlikely to meet anyone with the same condition but the Internet may make it possible to connect with the same condition. One group I participate in even uses Skype for group chats with members, which brings us all closer together and provides a more interactive experience.

The next point, I would say I love is being able to gain practical support from my health community. Often I find myself not knowing the best solution to a problem that I am experiencing; so asking others and brainstorming ways around the problem to find an effective solution which may even lead to more productive and independent life. And another great thing about being involved within the health community is the reciprocity – learning different tips and tricks on how to cope and overcome different obstacles and passing these onto others! Sharing information is so important in terms of health advocacy.

And the last thing what I love and think is great about my health condition – is that we are all unique and special in our own ways. Just like a snowflake, no two patients are alike and each exhibiting a different set of symptoms. Everyone is beautiful and special.

Hope you enjoyed the post – feel free to leave any comments….

WEGO Health Advocating for Another Carnival: Inside a Fishbowl Post

Welcome to the first post of the week-long carnival hosted by WEGO Health.  This special writing carnival focuses on health activists who dedicate their time advocating for someone else.

Today for the first post I have decided to use one of the bonus prompts given.  The reason for this is that today’s prompt asked to provide a descriptive portrait of the health community and to provide an image.  However, as, I have mentioned before, the condition which I suffer from is an invisible, therefore, even I were to provide a descriptive portrait of the health community it wouldn’t shed light on the condition.  In addition, as the condition is neurological in nature, it means that not every patient is the same, each unique and each exhibiting different symptoms.

The bonus prompt I have decided to use is entitled ‘From Inside the Fishbowl’ which asks:

People think that they know what your life is like – but appearances can be deceiving.  Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.

So, if I and others like me in the wider health community were to be placed inside a fishbowl, seeing what my life looks like from the outside looking in they may come to the conclusion that my life was pretty great.  Maybe they would conclude that there isn’t much wrong, I look ‘normal’, and am able to walk, talk, able to complete chores around the house.

However, as with all invisible chronic health conditions, the daily struggles and the symptoms with which I experience on a daily basis cannot be seen, they are invisible to the naked eye.  If these were visible, people would be able to see the overwhelming fatigue that I often experience especially in the evenings, often needing to change into a comfortable pair of pyjamas before 7.00 p.m.  The dizziness and imbalance that I constantly feel would be visible, the imbalance being characterised by the swaying back and forward that I experience when standing, legs visibly shaking also.  It would also not be known that due to the spastic paraparesis that I suffer makes my legs feel incredibly stiff and weak, leading to the giving of way of legs, falls experienced on a regular basis.

If my life were visible inside a fishbowl, I hope people would understand how the condition in which I suffer has a negative impact upon all areas of my life, and how even though I may look fine, it is not often the case, instead feeling unwell the majority of the time – dizzy, my whole world moving and shifting.  It would clearly be visible all the problems faced in terms of the mobility – the weakness in the legs, the trembling sensations that I feel, making them feel as if they are constantly shaking whenever I am standing.  The tiredness I feel the majority of the time – the constant state of fatigue drowning me.  Hope it just goes to show that appearances can be deceptive, and although a person may appear healthy and ‘normal; it may not necessarily be the case.