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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Write about burnout.  What does it feel like?  What are your burnout triggers? 

Ah, burnout!  I am finding that I am experiencing burnout more and more frequently. For me burnout feels like overwhelming fatigue seeping from my every pore.  So fatigued, that even raising a finger feels like the utmost effort. On the very bad days when my ‘burnouts’ occur; my legs become extremely weak; resulting in me unable to stand let alone walk.  The dizziness and vertigo can also be very bad on my ‘burnout’ days; leaving me in bed for all of the day wrapped up in a blanket with only the TV for company.  Also spend time sleeping; or at least trying to sleep as the dizziness can be so intense that it often stops me from doing so.

Triggers are harder to discuss.  Life is unpredictable; and my condition is no different.  Burnouts can appear out of the blue; like an uninvited guest.  And burnouts are very much an unwanted guest.  As time goes on however, I have noticed certain factors in my life that can exacerbate symptoms; meaning a burnout is more likely to occur and these can include such things such as:

  1. Overdoing things – if I take on too much or do too many chores or have undertaken too many activities on a given day
  2. If I stand for too long – my weak legs really do not like me standing for too long as it often leads them to give way
  3. Flashing strobe lights
  4. Stress – let’s be honest everyone can relate to this one!
  5. If I’m tired

So, a burnout leaves me weak, fatigued, leaves my world spinning and basically leaving me unable to function.  On the worst burnout day, whilst both my parents were working, I was left alone and was so weak, I was even unable to leave my bed to get myself a drink.  As I was alone for several hours it also left me dehydrated.  Obviously, as I am unable to get out of bed; I am therefore confined to my bedroom, and this can be exponentially lonely – no one to talk to, just me and my television.  And when there is nothing decent on to watch on the television, I am just left alone with my thoughts and misery.

However, instead of concentrating on the miseries of burnouts associated with chronic illness, I thought I would share all the little things that make me feel better when these occur:

  1. I would be last without my iPad!  There are many applications that I have downloaded that helps me pass the time.  For example, I have Netflix downloaded so I am able to watch some films or television dramas when I am confined to my bed.  Alternatively, I have some of the TV catch up applications such as the BBC iplayer and Demand 5 so that I am able to catch-up on the programmes that I have missed throughout the week.  Then there is a jigsaw game that I love and keeps me entertained for hours.  As well as keeping me entertained, I am also able to access Facebook and Twitter so that I able to keep-up to date on all the goings on and even talk to someone when I am feeling lonely or low
  2. My dog Honey!  Pets are amazing and sensing when we are feeling fragile and unwell, and Honey makes sure that I have plenty of hugs and kisses when I have a burnout.  If I am on my own however, she will often be found lying by my bedroom door, keeping an eye out and generally protecting me
  3. And when I am having a bad day there is always my ‘comfort box’ filled with everything that gives me comfort and joy!  On my bad days I get it out and just smile at all the little bits and pieces in there!  I have a certificate of my sponsor dog from ‘Dogs for the Disabled’; DVD’s of Grey’s Anatomy and my favourite feel-good comedy film ‘The Proposal’; a couple of cute little bears from the ‘Me to You’ range as well as a present from a great friend of mine (a gorgeous butterfly brooch)
  4. I have a gorgeous print by a local artists sitting on my windowsill (still need to put it up on a wall!).  The artist incorporates beautiful and uplifting quotes within her art work and the one I purchased features a butterfly with the words ‘Just when the caterpillar thought the world was over it became a butterfly” – it’s a beautiful reminder as to the importance of positive thinking as well as giving me hope of a better tomorrow

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition 

Scan 13 Apr 2013 15_54-page1

What better vintage photograph then one of me as a newborn baby?  A picture of me 27 years ago.  Here is a picture of me on the day I was born.  A picture of me after the damage was done – after the brain stem lesion had formed but would be left undiagnosed for another 24 years.  A picture of me where I was a blank slate – nothing bad had ever happened to me, nothing exciting never happened either, I had never hurt or been hurt.  A whole lifetime was still ahead of me.  My parents dreamt of a life where I fulfilled my potential – university, a career and then starting my own family.  Back then, none of us could foresee chronic illness, dizziness, vertigo and visual disturbances as permanent fixtures in my daily life.

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Tell us 3 things that are true about you, your condition, or your health activism.  Tell us 1 lie.  Will we be able to tell the difference? 

This a really fun prompt!!  We recently played this game at a local group that I attend, and it was a lot of fun as well as learning more about the people we were spending time with each week!  Although it can be very challenging trying to think of a false statement, whilst also thinking of correct statements which aren’t too obvious!

These are the statements that I have chosen:

  1. Although I am Welsh, I was actually born in Germany
  2. One of my  favourite TV programmes is Grey’s Anatomy and I own all 8 series on DVD
  3. I love musicals and my favourite is Chicago
  4. The dizziness that I experience started around the age of 8

So, which do you think is the false statement and why?  Comment below…and I will reveal the correct answer tomorrow!

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link them back to let them know you were inspired

 

Blog Post: Shipwrecked from ‘Chronically Creative’

In my early teenage years whenever I was bored (and attempting to avoid homework), I’d sit at my family’s communal computer and wait for the animated screensaver we had installed to pop up. Sometimes I would let a good half hour slip away watching a shipwrecked, disheveled cartoon man fighting to survive on a deserted island while awaiting rescue. I watched him catch fish for food and climb trees to collect coconuts to drink juice from. I watched his fruitless attempts to build a life raft from washed up planks of wood leave him drained by disappointment. I felt his frustration when he couldn’t get a fire going. I saw the SOS messages sent out- desperation packed in a bottle and tossed into rough seas, with a smidgen of faith that the cries for help would reach populated shores.
Whenever a plane happened to pass over the island, I watched this cartoon man’s hope soar as he jumped up, waved, and welcomed the possibility of rescue, only to have it plummet with the sadness of still remaining unseen. The days were long and lonely. Sometimes the sadness and disappointment got the better of him, but despite the harshness of the sun’s heat, he kept picking himself back up and letting the hope of being rescued one day wrap tightly around his heart. When it seemed he had exhausted all options, he would sit and dream of a life free from the limitations the island imposed. In the dark of the night he would lay down and stare at the stars, believing for a better day.
As I sat down to put pen to paper the other day and attempted to empty my mind, the memories of this screensaver flooded back. In that moment of contemplation, I realised that what played out on that computer screen, metaphorically speaking, describes what life with chronic illness is like a little.
In the pitch black of night, stormy seas have rendered me shipwrecked. Now I’m stranded on an island with day time temperatures akin to the sweltering Sahara, lost in bleak and dismal emptiness. I feel lonely. I feel scared. I feel hopeless. I feel disconnected. I feel depressed. I feel isolated. I don’t feel like my life has purpose and meaning on this island. I am just doing what I have to do to survive and get by. I am barely living. The mundaneness and monotony on this island is terribly unfulfilling.
My ship lies broken in pieces half-submerged by shallow waters, a constant and frustrating reminder of its uselessness. I try and build a life raft but I keep getting splinters. I try to keep on going but I can’t keep the planks of wood together. I try to get myself back to normal life, but my plans and ideas keep sinking. I feel so stuck. Am I ever going to get off this island? When am I going to be able to get back to normal life?
Just like cartoon man pinned his hope on a passing plane, I too get my hopes and am let down. I hope that a new drug, a new diet, or a new doctor will be able to throw me a lifeline. Though time after time I am left bitterly disappointed. Sometimes my cries for help go unanswered. Sometimes people passing by are too busy to notice that I am struggling and need some extra support. Sometimes the bad days get the better of me. The loneliness, the frustration, the pain, the exhaustion it just gets too much.
However, when things start looking bleak and my heart is overwhelmed, I hold onto hope a little bit tighter and dream bigger. I explore and discover new things. Exactly like that cartoon character who I sat intently watching all those years ago.
So, I sit and I dream of a life free from unrelenting pain and crippling fatigue. I dream of all the things I will do when I’m finally better. I dream of travelling, writing a book or two, getting a degree, starting a business, falling in love and having a gorgeous country wedding.
I dream of setting sail again, getting back on course and heading off on wonderful adventures.
My ship may have sunk and it may seem as though there is no escaping this island, but help is on its way. Help is out there somewhere. Someday soon, I’ll have a brand spanking new ship, but until then, I just have to sit in the sand, be patient and keep on dreaming and believing.
Thank you sharing such a wonderful post. I very much enjoyed reading it. I loved the metaphors! And I particularly enjoyed the comparison between the computer screensaver that you used to watch and life with chronic illness. As I was reading the post, the more I found that I was able to relate to your words – yes, you are right, living with chronic illness is very much like being shipwrecked on a deserted island. And the body being compared to that of a broken vessel. As you mentioned, being shipwrecked is often lonely, isolating and hopeless – the same feelings that many people live with on a daily basis alongside chronic illness. Even more, the condition I live with – a long-standing brain stem lesion is rare, and after spending a lot of time in various hospital outpatients, seems to be also untreatable. Because the condition is rare and unheard of, also means that I have not been able to find anyone else, online or offline that has the same condition.
So, it seems that my health condition has also drifted me out to sea, resulting in me washed ashore a deserted island in which I am isolated and alone and with no way off the island. No resources for my condition; no organisations that I can turn to for help or support – just like being deserted on an island with no resources to be able to find a way off the island or even for survival.  And resources that may be helpful for finding a way off the deserted island (or in terms of chronic illness – treatments) only ends in disappointments or further problems (i.e. unwanted side effects).
I can understand and relate to your frustrations regarding being let down by doctors, and promising new treatments only for them to end in disappointment and further unanswered questions.  So many times, I have gone to the doctors or hospital consultants hoping for support or any further help that they can offer only to hear those words “I’m afraid there isn’t anything that we can do….”  Does feel like slowly sinking in a wreckage; barely keeping my head above the rising water.
Also, I love how your post also reminds us the importance of remaining positive despite the chronic illness; despite being stuck on the deserted island.  How important it is not to let the illness rob us of our dreams or aspirations, as often it is these dreams and aspirations that get us through the dark times.  The belief that all the answers and help is out there somewhere; and someday the help will come and rescue us from the island; from our illnesses.
However, more than this, your post provides an excellent way of describing exactly what it is like to live with a chronic condition daily to someone who is healthy. Often, it is difficult, to understand another person’s point of view, decisions or even their way of life if we ourselves had no prior experience of that particular situation or had no relevant information regarding the situation. People, in my life therefore have a very hard time in trying to understand what it is like to live with the symptoms that I do. Your post, however, uses a fantastic and simple metaphor in order to share with ‘healthy’ person the struggles and difficulties that chronic illness places on our daily lives each and every day. Okay, the ‘stuck on a deserted island’ isn’t a situation that many people have faced, but thanks to television shows such as ‘Lost’, it is one that is much easier to imagine the experience of then that of a rare condition like mine!If someone again asks me to explain the experience of living with a chronic illness then I will certainly signpost them to this incredible powerful post! Well done!

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

Getting a diagnosis for me, was bittersweet, on the one hand, I felt relieved – relieved that all the tests and hospital appointments; relief that in fact all the problems were not just “all in my head” as I was told so many times before by a number of doctors. It felt as if a huge weight had suddenly been lifted from my shoulders; all the symptoms that I had been experiencing had finally been validated by the medical community – finally I had proof. Many people hate labels, however labels can be useful – labels can bring people together and give a sense of belonging as well as the knowledge that there is a label and name for what you are experiencing.

On the other hand, however, here I was being told the diagnosis – a long-standing brain stem lesion. A condition, which as the name suggests is life-long; not curable and furthermore was told that there was nothing that could be done in terms of treatment. This, as you can imagine, is disheartening and frightening. The first thought that goes through your head is “Well, that’s my life over!” At that time, the symptoms were bad that they were leaving me unable to work, and if the condition was one in which was life-long then does that mean I’ll never be able to work? The situation I was finding myself in felt hopeless; as if I no longer had anything to look forward to.

So, if I was able to go back in time and talk to myself on the day of diagnosis, I would tell myself as bleak as things look at that moment – it does get better. I will tell myself all the wonderful achievements that I manage to achieve – completing course, starting a blog, asking to write articles for various websites, and even going to help set a group for those with illness and disabilities and becoming secretary of that group.

As I remember, at the time of the diagnosis, because of the severity of the symptoms I was unable to go out. Even now, I am unable to go out unless I was accompanied by another person, however back then the amount I spent outside of the house was very minimal as my parents worked and there was no one around to take me out. Therefore, after being diagnosed I was afraid that my life would involve staring at the same four walls everyday, stuck inside with just the dog for company. If I was able to return to the day of my diagnosis, I would be able to tell that girl sitting there that her life didn’t have to be that way – she could get help from Social Services and with the help of direct payments be able to employ a personal assistant to help her get out into the wider community and be able to do all the things that she wanted to do – be able to choose her own beauty products, shop for herself instead of relying on her parents or internet shopping, as well as going to the cinema or swimming. All of the above which I am now doing and enjoying every minute! Now I feel I do have a purpose and with a little planning am able to do all those things that I had wanted to do but felt was unable.

At the time of the diagnosis I also felt lonely – as if I was the only person going through all of what it was I was experiencing. If I could go back and speak to myself on the day of diagnosis I would surely tell myself that I will eventually find friends; friends both online and offline who although do not have the same diagnosis but nevertheless understands what it is like to live a life with illness. Would also tell my younger self that those feelings of isolation and loneliness would not last forever.

I would tell the sad, lonely girl to stay strong and positive and ensure her that positive things will eventually come into her life.

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