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HAWMC 2013 Day 18: Frustrations of Chronic Illness

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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 a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go.

I have been desperately looking back and trying to find a time in which I lashed out at someone. However, I am coming up with nothing. The truth is, I am just not that type of person. No, I do not lash at people, venting all of my frustrations, fear and anger about living with a neurological condition, which often negatively affects my life. Instead, I tend to direct all my anger and frustrations, inwards, bottling everything up, and instead of shouting at somebody, I often will have a cry into my pillow instead, often when my pain or the dizziness leaves me unable to sleep.

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Yes, living with chronic illness can be very frustrating. For even the healthy, sickness can bring upon a blanket of misery and frustration. However, that misery and frustration are exponentially multiplied when living with a condition which isn’t temporary and instead is permanent and steadily getting worse. I am finding more and more that the condition in which I live, the long-standing brain stem lesion, is leaving me feeling really fatigued. So fatigued that I often need a nap sometime during the day just to be able to function. This is very frustrating as I am only 27 years old – and needing to take a nap during the day isn’t something someone of my age should need! In addition, it also decreases the time in which I could be doing all the things that I really want to be doing in my spare time. It is extremely frustrating when running out of ‘spoons’ and not having any energy to be able to do the chores that really need doing or taking part in an activity that you particularly enjoy. Recently, I had to miss out on both of the two social groups that I attend every week as I was too unwell to go – very frustrating just having to stay in bed all day, and missing out on life.

One week, as I attended the group, I experienced a ‘funny turn’ and was suddenly taken very ill; and my Dad had to come and immediately collect me, even though I had only arrived several minutes before.  This was not only incredibly frustrating; for both me and my Dad; especially as I was looking forward to the group session, but I also found that this ‘relapse’ also knocked my confidence for future sessions of the group as it was always in the back of mind that this type of turn could happen again.

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How frustrating it is needing to conserve all the spoons that we can instead of doing everything that we want

It can also be very frustrating seeing everyone else on social networks living their life without any worries or problems, as well as seeing them and hearing details of them doing all those little things that you so desperately wish to do but are prevented from doing so because of the state of your health. These things can include seeing others on holiday, nights out, attending music concerts or festivals and so on. This is not to say we are not happy that others are enjoying themselves, seriously, we are really happy for them but is still really frustrating for us when we are unable to do the same.

For me, one of my frustrations of my chronic illness is not being able to access the stores I love. Many of the stores that I love or wish to visit (really want to go to ‘The Range’ to stock on craft products!) have high ceilings, which people who regularly visit the blog will know, is one of my main triggers for the episodes of vertigo that I regularly experience. This is extremely frustrating as for one I cannot visit these stores which I love, and if I did would leave me feeling unwell for a long period of time. And secondly, whenever I wish to purchase something from such stores, I have to instead rely on the internet, and also means I have to pay for postage and packing, therefore costing me even more money!

Another frustration is definitely being unable to make definitive plans with friends as we never know how we will feel on that particular day. On top of this, try living with a fluctuating condition, which changes how you feel in an instant. Even on the day you have the plans, and think you feel fine, symptoms may begin just before you are due to meet your friends, resulting in you having to cancel. This results in feelings of guilt in having to cancel.

Frustrating!

However as much as all of these situations can lead to intense sadness and frustrations; it does not help dealing with the chronic condition, and in fact can instead lead to depression. Therefore, maybe it is time to let all these frustrations and go look for the ‘silver lining’ in life…

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There are some of my frustrations with chronic illness; what are yours?  Please share your thoughts and comment below!!  I would love to hear some of your frustrations with chronic illness!  Let’s all vent and get some of the frustrations out!

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HAWMC 2013 Day 17: Wordless Wednesday

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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:

Go to http://www.wordle.net/ to create a word cloud or tree from a list of words associated with your condition, blog or interests.  Post it!

 

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But there is more than me than just my illness; so here’s a Word Cloud of some of my favourite interests and hobbies:

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And well done to everyone who correctly identified “I love musicals and my favourite one is Chicago” as the incorrect answer to yesterday’s poll!  I indeed love musicals but my favourite is ‘Les Misèrables’!

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HAWMC 2013 Day 16: Misinformation! Can your spot the false statement?

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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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HAWMC 2013 Day 15: Sharing! A great post by another blogger….

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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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HAWMC 2013 Day 14: Sharing the love! I would like to thank…

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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:

Thank a few of your fellow Health Activists for what they have done.  Call them out by name or twitter handle.  Share your love!

Ever since I began this blog back last January I have been blessed to have met some wonderful people through the blog and twitter.  This gives me the most wonderful opportunity to thank some of them who have made the most impact; whom have been inspirational; and those who have not only given me support, but have also supported so many others.

The first person I have to thank is Marissa (@marissaabledis) who was the first person who inspired me to start the blog; as well as given me the confidence, and for always supporting me in everything that I do.  As well as this, I would also like to mention her outstanding work last year for her fantastic ’12-12-12 Project: 12 Months; 12 Journeys; 12 Lessons’ series, in which I was honoured to be a part of.  In this project, Marissa highlighted various chronic conditions, educating herself on all them as well as through a podcast learn about the person’s journey with the condition.

As well as all this, Marissa is a fantastic advocate for those living with chronic dizziness; and is a great supporter of everyone living with dizziness.  Soon she will be embarking on a series of podcasts with a friend of hers about living with dizziness.  The series will be called ‘The Spin Sisters Podcast’.  The details can be found on their Facebook Page .

Another health activist who I really admire is Pamela (@dystoniamuse) and I truly love her blog ‘Chronicles of a Dystonia Muse’; it’s a light-hearted blog which chronicles Pam’s experiences with a neurological condition called Dystonia.  Pam is a true advocate for patients with Dystonia; and does a lot of work to bring awareness of the condition as well as supporting those already diagnosed.  Not only is her blog fantastically well-written; but Pam has also become a great friend and supporter.  Pam also makes the effort to comment on many posts that I have written, all of which complimentary.  I really appreciate the support and care Pam has shown me, and this is a brilliant opportunity to thank her, for her support and let others know of her great work as a health advocate.

Another health advocate that I would like to acknowledge is that of another good friend; who also helped set the ‘Spoonie Book Club’ that I am a part of, is Anya from the brilliant blog ‘The Patient Patient‘.   Anya successfully advocates for herself and others living with long-term health conditions.  Anya mentors others living with long-term chronic illnesses as part of the Expert Patient Programme as well as talking to medical students on the patient perspective of the biopsychosocial model of disease, which can only benefit all patients as newly qualified doctors reach a better understanding of what it is like for us all living with chronic illnesses, leading to better understanding and treatment from the medical profession.

And lastly I have to thank all those involved with the upcoming magazine – ‘Unseen Magazine‘ – a magazine for all those living with chronic illness; attempting to improve the lives of everyone battling long-term health conditions.  They really deserve so much recognition for their work, and for giving us all living with chronic illness a voice, and providing us with something that we can relate to.  And a special mention to the magazine’s editor Aisha who have not been another great supporter of mine but has truly become a special friend too.

Other blog and health advocates who are worth a mention:

Kim – ‘Hope Whispers‘ – a great blog chronicling life with a rare liver disease, Budd-Chiari Syndrome

Sarah Levis – ‘Girl With The Cane‘ – another great advocate for those with disabilities.  Sarah uses her experiences with acquiring and living with the effects of physical disability as well as her work with those with intellectual disabilities, to approach and write regarding disability advocacy, education and associated issues in her fantastic blog.

 

Who are some of your favourite health activists or bloggers?  Share the love and comment below!….

 

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