Riding the waves of chronic illness…

Well this is my first post for well over a month.  I apologise for my long absence and lack of writing, but unfortunately once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking has been particularly difficult.  Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days however made me realise the importance of pacing.  Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in over exertion.  Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.  Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words we may find we are able to tolerate certain activities on some days but not on others.  Despite this however pacing is often regarded as the most appropriate self-management strategy that help us remain as active as possible whilst avoiding overexertion.  On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?  But in reality it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine.  Despite this however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions
Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take for instance, a trip to a retail park that I took with my carer.  A retail park with a plethora of shops to peruse at length.  This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.  Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse.  As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.  The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my  sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion!
Retail Park just like the one I managed to visit – take that brain stem lesion!

For me it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip.  Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home.  And why?  I had exceeded my energy limit and overexerted my body’s limit.  I had failed to listen to my body and did not use the wheelchair when I probably should have.  And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing.  When living with chronic illness, we often find that  severe and unrelenting symptoms including pain, dizziness and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.  To live a successful life despite chronic illness therefore we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life
A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.  To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.  To not be defined by our condition but rather be defined by the successes that we achieve despite it.

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HAWMC Day 19: Defeating Stress

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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 given prompts.

Sunday 19th April: Stress Awareness Month 

What’s the best way you deal with stress?  How do you like to let loose to escape common stressors?  Share with us your favourite ways to shake off the stress

Stress is defined as “the physical, mental or emotional factor that causes bodily or mental tension”.  Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure for example).   When these stresses are triggered, it initiates a complex reaction of  our neurologic and endrocrinologic systems also known as the ‘fight or flight’ response, in other words, our body prepares us to either fight the cause of our stress or run away from it.

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Everyone is susceptible to stress, and is something that everyone will experience many times during the course of a lifetime.  It can be caused by anxiety over exams, financial problems, family arguments to name but a few examples.

Chronic Illness Cat understands that stress levels can increase when living with a chronic illness
Chronic Illness Cat understands that stress levels can increase when living with a chronic illness

Furthermore, everyone is susceptible to the effects of stress.  However, living with a long-term health condition, makes you particularly vulnerable.  In addition, to challenges that are normally faced, chronic illness can provide new stressors, including:

  • pain or discomfort from symptoms
  • managing the condition and coping with the treatments
  • adjusting to the new limitations that are caused by the condition
  • feelings of frustration loneliness and isolation

There are several strategies that they suggest to increase the quality of life for those living with chronic conditions and to minimise the challenges that goes with living with a long-term illness, such as:

  • Self-Management: Making positive conscious decisions to help ease the symptoms experienced and to improve quality of life.  These include the choice to eating nutritious foods, getting plenty of sleep and exercise, all of which can help improve mobility and ease symptoms as well improving mood and lessening the effects of stress
  • Developing adaptability: By accepting your condition and the limitations that arise as a result can allow you to take control of the condition as well as allowing you to develop coping strategies that works for you.  And by doing so also allows you to better manage any new challenges as they arise
  • Understanding the condition: It’s always helpful to learn everything about symptoms and treatment options.  It’s also helpful to observe your body and learn any triggers that exacerbate the symptoms as well as those which ease the symptoms as they will not be the same for every patient.  Use a journal to record the insights that may help you manage the symptoms.
  • Managing emotions: Experiment with different strategies to manage stress and other negative emotions.  Find the strategies that works well for you can incorporate these into your daily, or weekly routines.

What has worked for me? These are some of the strategies that I have found particularly helpful, and not only for stress management but distracting me from symptoms such as chronic pain:

  • Listening to music: When I am stressed or experiencing excruciating pain then I like to press play on a playlist of my favourite songs and listen to them whilst lying down on my bed with my eyes closed and focusing on the positive, inspiring and uplifting lyrics482887415
  • Breathing and relaxation exercises: As someone who experiences anxiety as part of my condition, or when I am experiencing insomnia I find breathing and other relaxation techniques very useful to help.  It is important to regularly practice these types of techniques, as they are much like muscles which need to be worked on to be effective.  And after practicing these techniques I usually feel so relaxed that sleep comes very naturally!Word Relax on beach
  • Colouring-in: A new technique that I have discovered, yes, it’s no surprise children are so relaxed as colouring books really help with switching off the brain and helping us to unwind from the stresses in our lives.  Although, I have been using it as a distraction technique to manage the pain I have been experiencing, which is helping and is an activity I am very much enjoying!20150418_110552
  • Puzzle Books: These are another great distraction technique from stress, anxiety and pain.  The concentration needed to complete them is a welcome break from worrying about the little stresses in life, or about the troubling symptoms.  My recent favourite puzzle has been the codebreaker – what is yours?
  • Painting Nails: If  am feeling low or particularly unwell, painting my nails with a bright, bold colour always cheers me up, and as someone who suffers with shaky hands I also need a lot of concentration to do a good job and in doing so any pain or stress that I may be experiencing is forgotten!

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HAWMC Day 12: When in Need of Self-Care…

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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 given prompts.

Sunday 12th April: Day of Rest

Kick your feet up!  What is your ideal day in?  When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?

Self-care can be defined as the process of maintaining health and managing chronic illness through health promoting practices and self-management.  It could also be defined as coping strategies during relapses or flares of symptoms.  Self-management are behaviours that are performed in response to signs and symptoms of illness.

When living with a chronic illness, therefore it is important to embed self-care and self-management practices into one’s routine.  Perhaps one important aspect of self-care is having a day of rest on days in which symptoms are particularly bad, or even days following a relapse to allow the body rest and recuperation, and a chance to regain depleted energy levels.

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Recently, the symptoms associated with my neurological condition such as pain, dizziness and the trembling and weakness in the legs have been debilitating; often finding they become worse days after trips out with my carer.  As a result, I have been in need of days of rest myself, so this post should come easy!

These are some of my top tips for activities to put into place on those bad days, or just for when you need to relax, recharge or recuperate from life with chronic illness:

  • Date with Netflix (other streaming service are available!) or DVD: When I am having a bad day, or in need of a quiet or relaxing day, then watching a film is one of my favourite ways to spend my time, especially for someone who is somewhat of a film buff.  In particularly I love romantic dramas or even a good romantic  comedy.  Nicholas Sparks adaptations, such as Safe Haven, The Best of Me and The Notebook are amongst my favourite films to watch when having a bad day.  Or, the need of a quiet and relaxing day is a perfect opportunity to discover new films to enjoy20150411_183711
  • Art Therapy: The pain that I experience in my legs has been really bad of late.  So bad that it is hard to concentrate or think about anything else.  A while back, however I remembered an article that I read that discussed the new craze and resurgence of colouring books for adults.  In the article it suggested that the art of colouring-in is very beneficial for relaxing and beating stress and anxiety.  Colouring allows a person to concentrate and escape from their thoughts and daily life in a similar way that mindfulness does.  At the same time, I seen advertising for a new magazine called Art Therapy, which has pages of different patterns and designs for users to colour-in, also including pages dedicated to insights  regarding to mindfulness and relaxation.  Basically the magazine allows for quality time with yourself.  I subscribed almost straight away and after receiving the first issue, I have been colouring during my days of rest and has found it has been a great technique to distract myself from the pain.  It’s also really fun!20150404_182614
  • Pampering!: Nothing like a bit of pampering to relax and give yourself some self-love.  If I am feeling down or had a bad week, then I love nothing better than to use one of my luxurious nail kits and paint my nails.  Whilst Mum and I were in Bath, and my pain was bad, she went into the local Lush store and bought me a Massage Bar which includes an oil which has been shown to increase serotonin levels in the brain.  A great way to give yourself a little pampering and lift your mood at the same time!20140920_165005
  • Create a happy and relaxing playlist: Music has been shown to have a positive effect on mood and well-being.  And I love music and have songs on my iPod that triggers a special memory or instantly makes me smile.  So, why not create a playlist of happy and uplifting songs to put on your MP3 player for when you need a pick me-up, or relaxing and chilled music for the times you need to unwind and recharge.
  • Create a Comfort Box: I have written about the concept of a comfort box in previous posts.  But simply, a comfort box is a box that you can fill with things that brings you comfort, joy and relaxation.  Ideas to put in a comfort box include craft kits, pictures of happy times, favourite books, films or television boxsets.  Other examples include scented candles, favourite snacks or even a journal.  The comfort box can even be placed under or near your bed so that it can even be of use when stuck in bed due to chronic illness.

    Inside view of Comfort Box
    Example of a Comfort Box
  • Spend time stroking your pet: Take time stroking a pet (if you have one) as research has found that doing so can lower your blood pressure, helps the body release a relaxation hormone, and even helps cut down levels of a stress hormone.  And it has beneficial effects for the animal too!

HAWMC Day 6: Actress, Humanitarian and Health Activist

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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 given prompts.

Monday April 7th: Your Hero 

Everyone has someone they look up to – a person they go to for advice, an individual you admire or idolise.  It could be your partner, a family member, coworker, or someone famous.  Who are they and what makes them awesome in your eyes?

This is a tough question.  I am surrounded by a lot of amazing and inspirational people, many of whom I look up to and admire – my Mum, my friends Aisha, Anya, Hayley, Claire for examples.  It was hard to choose between these fantastic people, and so instead I have opted to discuss a well-known celebrity whom I both respect and admire.

Angelina Jolie.  A woman who has many facets to her personal identity – a wife, mother, woman, actress, UN ambassador, and now health activist.

Angelina Jolie should not only be admired and respected for her incredible acting career, not only playing iconic characters such as Lara Croft and Maleficient, but also won many accolades for her performances in films such as Girl Interrupted, Changeling and Gia.

Angelina Jolie in one of her most famous roles, Maleficient
Angelina Jolie in one of her most famous roles, Maleficient

However, it is her work off-screen why she has become a woman many have become to respect and admire.  Her extensive work as a humanitarian, and US Ambassador has taken her to many countries around the world, witnessing the devastating effects of conflicts and natural disasters.  She has met many people who have been affected by such events, such as refugees who had been displaced due to conflicts in counties including Sierra Leone, Tanzania, Cambodia, Syria and Iraq.  Her work has also seen her meeting and helping those who have been personally affected by natural disasters, including earthquake victims in Haiti.  And her recent work, and visits to places such as the Congo with MP William Hague helped raise awareness about the use of rape as a weapon in conflicts which included a passionate and inspiring speech at the 2013 G8 Summit in London.

Angelina Jolie, the UN Ambassador
Angelina Jolie, the UN Ambassador

Her work however has not just included helping highlight the effects of events such as war and natural disasters, but the selfless and inspiring woman has even set up and financed many charitable organisations including the Maddox Jolie-Pitt Foundation which is dedicated to community development and environmental conservation in Cambodia, where her eldest son was born and whom inspired the charity.  She has also helped fund projects which helps to fund education for those children affected by man-made or natural disasters, and those organisations committed to providing legal aid for immigrant children living in the United States.

However, it is  recent events in Angelina’s private life which have really helped win the affections of many around the world.  In 2013, Angelina Jolie revealed to the world that she had undergone a double mastectomy due to an extensive family history of both breast and ovarian cancer and having learnt that she had the BRCA1 gene mutation that dramatically increases a person’s chance of developing cancer.  In an essay for the NY Times, Jolie wrote candidly about her decision to undergo the double mastectomy and hinted at a future operation to remove her ovaries (which she underwent earlier this year).

Not only was she incredibly brave about openly discussing her decisions for undertaking such radical measures to prevent her risk of developing breast and ovarian cancer but in doing so has helped, and will help many women going through the same reality that she was.  In the piece for NY Times, Jolie encourages women to take control over their health issues, whatever they may be, and to seek advice, learn about their options and make the decision that is right for the individual.

In her piece, she writes ‘knowledge is power’.  And it is this principle that is popular among many health activists and those  working within the self-management field.  Self-management enables and encourages patients living with a long-term health condition to take a pro-active role in managing their own health and well-being.  It is an area within the healthcare field which puts the control back into the hands of the patient.

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It may however be a field in which not many patients are aware of; many report not knowing where to seek out information regarding their own health and well-being and as a result may still look to their healthcare professionals to give out information and advise them on the right course of treatment for them.

By speaking out so openly and honestly and encouraging everyone to be proactive and take charge of their own health, then it is perhaps more likely for it to happen, as history suggests.  For example, after Jade Goody spoke out after her cervical cancer was diagnosed as terminal, the number of women opting for a cervical smear, which detects it, increased dramatically.

For Angelina Jolie to use her celebrity status for good and a positive influence for many makes her a true heroine in my eyes.

Life is anything but a fairy tale…

Sorry for the recent lack of updates on the blog.  Despite still being active on my social media sites such as Facebook, Twitter and Instagram, I, however, have struggled to find the time or energy to write a post for the blog.  I had been experiencing good days during the last posts that I published, but unfortunately as many of you living with chronic illness will relate to, these good days do not last, and so my health has slowly regressed back and therefore bad days have replaced the good days.

During my break from writing, I have found the time to watch some of the films that I had been wanting to see for some time.  I cried during ‘The Fault in Our Stars’ and was particularly enthralled with ‘Maleficient’. I was captivated by the story of the villain depicted in the classic Disney film ‘Sleeping Beauty’ and even more so by the wonderful performance by Angelina Jolie.

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I was particularly impressed by how Maleficient was not simply a retelling of the fairytale Sleeping Beauty.  Don’t get me wrong, I love fairy tales, my favourite being Beauty and the Beast, but let’s face it, they are all highly unrealistic.  They portray everything as being black or white; characters being either good or evil for example.  What I loved about Maleficient, therefore, was the portrayal of the eponymous character as being both good and evil.  Unlike with classic fairy tales, the story of Maleficient portrayed various shades of grey.

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This then got me thinking of life with chronic illness.  If we were in a fairy tale, our illnesses would be portrayed as an evil beast, much like Maleficient in Sleeping Beauty or Ursula from The Little Mermaid as examples.  Our lives would be darkened and ruined by the beast that is inside of us.  Each and every day would be bad with no room for happiness, sunshine or joy.

However, just as real life is not simply black and white; I choose to believe that life with chronic illness is more like the portrayal of Maleficient; there is no good or evil.  I believe that even living with something as difficult as chronic illness, there are a lot of different shades of grey.  There are good times despite living with chronic illness, even though the bad days heavily outweigh the good ones.

I also choose to believe that during our lives with chronic illness, it can be portrayed as both a hero and villain just like Maleficient in the film of the same name.  It may sound strange to describe a chronic illness as a hero, given the severe and debilitating symptoms we have to live with because of it.  However chronic illness can also have a positive impact on our lives as it can teach us things about ourselves that we might never have known.  Chronic illness can also give us strength and resilience to overcome many obstacles and limitations that our conditions can place in our path to our goals and dreams.  Furthermore, we can also become more empathetic and understanding as a result of our struggles with illness.  Living with a long-term health condition can teach us some invaluable life lessons that we may never have learnt if it wasn’t for illness, such as the importance of learning to slow down, and learning to appreciate the small things in life.   It is for these reasons, therefore, that although due to severe and debilitating symptoms, illness can play the role of a villain in our lives, it can also learn to play the role of a heroine.

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The classic fairy tales such as Snow White and Sleeping Beauty have also stereotypically portrayed us females as rather feeble and fragile and thus needs to be rescued by a handsome and strong Prince.  Modern Disney films, such as Mulan and Frozen, for example, have shattered these archetypes and have shown that females have the strength and power to rescue themselves from whatever trials and tribulations that life has thrown at them.  My experience of living with a permanent neurological condition has also taught me that we all have the power to rescue ourselves from our own battles in whatever form that they take.  Doctors, medications and other treatments for me and many others can only do so much, and it is often down to us as individuals to self-manage our conditions and find the little ways which ease our symptoms or makes us feel better emotionally.  It is up to us to save ourselves from the depression and emotional pain that can result from living with a long-term chronic illness.   It is our own responsibility to make sure we are happy and live the best life we can regardless of the limitations that are placed upon us due to chronic illness.

Classic fairy tales and Disney films are renowned for their ‘happily ever after’ and as we are all aware, in real-life, and especially a life with chronic illness happily ever after simply does not exist.  It does not mean that we cannot be happy, however, we need to find our own idea of happiness, whatever that may entail.  Happy endings can be difficult to find as a result of chronic illness, but I would like to think that they can still be found, but perhaps it just means that we have to look that little bit more to find the rainbow through our personal storms.

Happy endings can be found despite chronic illness!
Happy endings can be found despite chronic illness!