HAWMC Day 21: The Disparity Between our Life Lists and the Reality…

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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.

Tuesday 21st April: Reflection 

This is a day to reflect.  For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day.  Reflect on your journey today.  What are your thoughts and hopes for the future?

Currently, I am reading an emotional and uplifting book, called The Life List, by author Lori Nelson Spielman.  It tells the story of loving daughter Brett Bohlinger, struggling after the death of her beloved mother.  In the book, she is left not only struggling with the death of her mother, but also is then left to pick up the pieces of her shattered life, after also losing her job at the family business, and then learning that her mother’s will, has one big stipulation – to receive her inheritance, Brett must first complete the life list of goals she’s written at the age of fourteen.

The Life List by Lori Nelson Spielman
The Life List by Lori Nelson Spielman

In the book, therefore, she is reintroduced to the goals and ambitions she made as a child and to reflect on the choices she has since made and the life she is currently living.

During my formative teenage years, although I never made a written list of the goals that I wanted for my life, but just like anyone else I envisaged what my future would look like; marriage to a wonderful and kind man, a couple of children, and a successful career helping people for instance.

It is interesting though to ask about the efficacy of making such life lists.  Are they a useful tool to direct your future toward a life that you wish to live?  Or, do they only serve for disappointment when the life you saw for yourself is so far removed from your current reality?

For those living with chronic illness for example, none of us or wanted or imagined the life that we have been stuck with.  There is nothing we want more than to be productive members of society, but unfortunately our bodies have other plans.  Once upon a time, we imagined a life full of love, happiness, career successes, but instead our lives revolve around our symptoms, hospital appointments and cancelled plans.

What would your ideal life list look like?
What would your ideal life list look like?

Admittedly, if I were to compare the life that I saw for myself as a teenager, like Brett in the book, and the life that, as if often seems, was planned for me, I would feel enviable disappointment regarding my life, and envy for those who are still able to pursue their life-long dreams and ambitions.

In the book, however, Brett embarks on a personal journey in search of her adolescent dreams, and by doing so she finds that life’s sweetest gifts can be found in truly unexpected places, and happiness can look remarkably different to the life that we imagined or had planned in a life-list.

And I believe that living with a chronic illness can also teach similar lessons; our lives may not have turned out as we imagined, but sometimes we may find little gifts which make life better than the one we imagined.  For instance, if it were not for the neurological condition I live with then I would not have found a passion for blogging, and I like to think that although I do not have a career which entails helping people, I do good work maintaining this blog and perhaps helping others in the process.  Another, gift I have discovered on this chronic illness journey is the wonderful friends I have made along the way, and continue to make everyday.  The support and friendship among the ‘spoonie’ community is astounding, and everyday I am discovering new friends who are special, and making friendships that will last for many years to come.

HAWMC Day 20: Going back on the waves…

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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 20th April: Travel Time 

If you could travel anywhere in the world, where would you go and why?  Maybe you’ve already traveled to an exciting place and want to go back.  We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

“Don’t float through life, make waves…”
– unknown

Travelling has never been an activity that I have particularly enjoyed.

I am very much a home-bird; never happier when I am at home surrounded by the comfort of the familiar.  Packing for holidays, has also been something that I have found stressful, with my parents constantly barking at me to get everything I am taking with me ready, and then asking if there is anything that I have forgotten!

As my condition has steadily worsened over the years, holidays as a result has not been a priority and therefore have stayed with family whilst my parents have gone on holidays including a trip to Canada, and their first cruise to celebrate their thirtieth wedding anniversary.

The debilitating symptoms and love of the familiar are not the only reasons why travelling is just not my bag.  Living with a long-term condition in which the symptoms fluctuate, and as a result makes life very unpredictable.  Life with a chronic illness is often extremely unpredictable, never knowing how we are going to feel from one day to the next, and never knowing when symptoms are suddenly going to appear.  And it’s this unpredictability therefore that makes travelling particularly difficult and daunting also.  As my condition, and particularly the dizziness and vertigo worsens in buildings with high ceilings, such as airports for example, flying abroad is also very problematic and therefore has prevented me from being able to travel.  Because of this it just seemed easier not to travel and instead enjoy the sights on one’s doorstep as an alternative to travelling long distances.

However, two years ago and after experiencing difficult times as a result of the neurological condition I live with, my parents decided that we were all in need of a relaxing holiday and away from the stresses of illness, hospital appointments as well as those experiences in everyday life.  And somehow, they talked me around to going on a Mediterranean cruise visiting France, Italy, Spain and Portugal.

This beautiful picture taken during our last cruise is one I will forever treasure.  Even when experiencing debilitating symptoms, I appreciated the extroadinary beauty of my surroundings
This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extraordinary beauty of my surroundings

All my research assured me that this type of holiday was ideal for those with disabilities or chronic illnesses; not only is cruising extremely relaxing but also has the benefit of having your cabin close by for when symptoms appear out of the blue and suddenly being taken ill.  Cruise ships are also fully accessible if a wheelchair is needed, and unlike air travel there are no long waits or delays at airports, so much less stressful than flying to holiday destinations!

Regular readers of the blog, will know about the trip which I wrote about in a past post.  The cruise was difficult for me due to a sudden deterioration of my symptoms which occurred a couple of months before the start of the holiday. As a result, I was unable to get of the ship at the different ports and go on the excursions.  Most of the holiday was either spent in the cabin reading or sleeping, or in the solarium relaxing, in the attempts to ease the excruciating pain in my legs.

Despite this however, this year I am once again going on another cruise, even going on the brand new Royal Caribbean cruise ship, Anthem of the Seas!

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A lot of you, are probably wondering why I would choose another holiday after my first experience last year.  Well, yes, the holiday did not go as plan and was left unable to do many things that I was looking forward to before leaving due to severe and debilitating symptoms, but that did not mean the experience itself was awful.  We needed a holiday to relax, unwind and switch off from the stresses from everyday life, which despite the pain and other debilitating symptoms affecting the holiday, I still managed.  The cruise was not an awful experience, and there were plenty of moments that I thoroughly enjoyed (such as dressing up) during the trip.

Furthermore, I thoroughly believe that we cannot let one bad experience put us off from trying again.  Just because I experienced a relapse in the debilitating symptoms last year before and during the cruise, does not mean that the same thing will happen this time.  This cruise will be my second, and therefore will be easier, as I am more aware of what the experience will entail and am able to put actions plans into place for when symptoms arise or when I am suddenly taken unwell.

In addition, the last holiday also helped me realise the need for a break from seeing the same four walls everyday and the same routines we live out; the cruise was a welcome break from constantly being stuck in the house, or held up in my bedroom due to severe symptoms.  It was an opportunity to see new sights, and experience things that I could never encounter at home.

Photos from Royal Caribbean Blog

This time around, however, we will be cruising around the Canary Islands and visiting ports in Spain and Portugal also.  It again will be a welcome respite from the stresses of living with a neurological condition, and endless medical appointments, as well as the opportunity to absorb plenty of vitamin D with its many health benefits.

With the first cruise on the new ship being imminent, and therefore being inundated with photographs of the beautiful decor and the many new activities to experience onboard via social media, I am beginning to get very excited about our cruise in September.   I am determined to forget about the disappointments caused by the previous cruise, and even more determined to enjoy and soak up as many new experiences as possible this year.

What about any tips that I could offer for travelling with a chronic illness?  There are plenty that I could offer after my experiences last year but here are some of my top tips:

  • Let the travel company know of your medical condition and any help that you may need.  When booking a cruise, or booking a hotel room, book a wheelchair accessible cabin/room, if a wheelchair is required for the holiday (it may be best to hire one if you do not own your own especially if symptoms such as fatigue is a problem).
  •  Carry all your medications and other necessary items with you in your carry-on luggage.  When cruising, your luggage is taken from you after arriving at the port and you do not see them again until you are in your cabin.  However, with a lot of passengers onboard delays can occur so any important items is best to pack in your carry-on luggage.  Also, include items such as swimsuits too so you can make full use of the amenities as soon as you are onboard.
  • Expect the best but prepare for the worse.  Chances are, you may not be able to participate in all the activities and trips during the holiday.  So, as a result prepare for some quality time by yourself in the cabin or hotel room.  Bring books, audio books, MP3 player or anything else you can do to keep yourself entertained whilst resting.  Wi-fi may not be available so perhaps try downloading some movies before you leave in preparation
  • Don’t overdo things.  It can be so easy to get carried away on holiday, and push your limits to keep up with everyone else, but don’t forget to listen to your body and take a break if you need to, because if you don’t you may pay for it later
  • Prepare yourself mentally before leaving and accept your limitations. Experience has taught me that you need to know your limitations and accept them before you leave, as chances are, you will not be able to do everything that you want during the trip and it’s best to accept this before you go and instead of worrying or getting upset by it, instead make the most of everything that you can do and enjoy them
  • Have a great time!

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 18: Here Comes the Summer!

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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.

Saturday 18th April: Summer is Coming

What are the 3 things you look forward to the most in summer?  Whether it’s the travel, the weather, family cookouts, or another activity, share with your readers why you’re excited for the summer!

It’s fast approaching the end of April, and as we enter into May we are ever nearing the start of Summer.  Hopefully, like last year we will be immersed into months of glorious sunshine  and warm temperatures.

Summer is the probably the favourite season for most people if asked.  Living in the UK, and experiencing long and miserable winters, the summer therefore provides a welcome respite from the grey clouds and rain.

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With  grey clouds overhead everything can look bleak and depressing.  In the summer, however, the same scene can look beautiful cast in dazzling sunshine and bright blue skies.  Also, if you ever notice being out and about during the winter, everyone seems in a rush; dashing in shops and buildings to escape the rain.  The same people during the summer, however, are much less hasty during their walks, taking their time whilst enjoying the feel of the warm sunshine on their skin.

Furthermore, in my personal experience, and depending that the temperatures do not get too high, I find that the chronic pain that I experience as a result of spastic paraparesis eases slightly during the summer months compared to the excruciating pain that the very cold temperatures during the long winter months causes.  Taking part in activities such as swimming also helps relieve any pain and discomfort that I do feel, and there is no better time of year to do said activity than the summer.

Look at that view  basked in beautiful sunshine and blue skies filling the sky.  Bet it wouldn't look half as beautiful when there are grey skies!
Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn’t look half as beautiful when there are grey skies!

A few months ago, I wrote a blog post about the reasons to love winter.  Not an easy article to write, and often felt that I was taking the reasons for hating the season and putting a positive spin on them.  I have the opposite problem for writing this post about summer; there are so many reasons for looking forward to summer, that choosing only three is extremely difficult!

Here are my reasons for loving summer:

  • Summer Fashion: Although I love my winter wardrobe as mentioned in my post on the reasons to love the season, with the chunky knits and thick, comfortable leggings, I prefer the summer fashion with all the bright colours such as orange, yellow and pink, all of which to me represents happiness.  I also adore wearing maxi dresses and white trousers, all fashions that look lovely and fresh during the summer months!  Recently, going shopping and noticing the new looks for summer, with the bright colours everywhere in the shop looked cheerful.  And the swimwear collections, reminding us that holidays are also looming
  • Good Times: The choice of activities during the winter months can be quite limited in part due to the changeable British weather.  However, if you are a person who likes to be busy and active, you are certainly spoilt for choice during the summer, as there is so much to do.  Summer fêtes, open-air theatre productions, outdoor concerts and music festivals to name but a few.  Tourists besiege the popular destinations, making the summer feel like one long party.  With so much to do, and the fact it’s light early in the morning, and the days are long, we get to see much more of our friends and families, enjoying barbecues, picnics, playing games and gossiping until late. Making memories that will last forever.
  • Nature: There are lovely natural sights to behold during the summer months.  Beautiful, bright butterflies fluttering around.  Dazzling, exquisite flowers in full bloom.  The smell of freshly cut grass.  The sound of birds chirping.  Everything feels alive and exuberant during summer!

There must be something special about summer, I mean even a snowman wants to experience it!

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HAWMC Day 17: A Slogan of Hope…

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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.

Friday 17th April: Health Tagline 

Give yourself, or your patient experience a tagline.  Grab attention with your slogan.  Make sure it’s catchy!

To come up with a tagline to encapsulate the patient experience or life with chronic illness is extremely onerous.  There are many facets to life with a long-term health condition; some good and some bad.  How on earth could we summarise everything that we have to face everyday into just one sentence?

If we could turn back the clock, and were given some medical literature about our condition, what would we want the tagline of the pamphlet be?  I know after, I was given a diagnosis of a long-standing brain stem lesion, my thoughts were consumed on the long-term aspect of the condition.  My thoughts were preoccupied with knowing that my life will never be normal again, and that no amount of medications will eliminate the symptoms caused by the neurological condition.

Therefore, I would want to read a slogan that could alleviate the fears of being diagnosed with a long-term condition, as well as providing hope that although life will be forever changed, and certain aspects of our lives might be lost, there are still plenty to look forward to and experiences that we can still take part in, and so on.   My slogan would envision hope and positivity despite the unclear outlook for the future.  Also, as my neurological condition is rare, and therefore any support for a condition like mine is non-existent, I wanted a slogan that is inclusive; a slogan that encompasses everyone living with a chronic illness, regardless of the diagnosis.

A friend was recently struggling herself due to her own diagnosis, and wanting to do something nice for her, during her time of need, I sent a card and letter.  In the letter, I wrote “Rainbows and sunshine can still be found even in the darkest of times“, and so I would choose this as my slogan.  I know the tagline does not specifically relate to me, or my patient experience, but it does cover something that we all need at times – and that is hope.  Hope for a better tomorrow.

A Slogan of Hope for anyone living with a chronic illness
A Slogan of Hope for anyone living with a chronic illness

HAWMC Day 16: A Focus on the Present…

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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.

Thursday 16th April: Life Goal

What’s one thing that your 10-year-old self thought you would do?  Can you still do it?  How would you approach it to make it happen?

Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.

In all honesty, I cannot remember anything that I thought I would do as an adult.  By that age, the dizziness that now is constant in my life, had started.  At ten, the dizziness was not constant, but was experiencing episodes of severe dizziness and vertigo.  These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.

As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking.  It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future.  I was too preoccupied on the present and the symptoms that were afflicting my life.

Life often has a way of making us to look at the past, present and future
Life often has a way of making us to look at the past, present and future

Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university.  At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another.  Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology.   Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.

Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future.  It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come.  Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.

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Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happens in the here and now.

Today's a gift.         That's why it's

 

HAWMC Day 15: The Joy of Letters

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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.

Wednesday 15th April: Get Excited! 

What revs up your internal engine?  When you see, hear, feel this it gets you excited and ready to face what comes next.  Tell us what it is!

In my recent experiences with dealing with severe and debilitating symptoms due to chronic illness, it is often very difficult to get excited about anything.

In the mornings, experiencing severe symptoms such as dizziness, pain, nausea and trembling, it is often a struggle to get through the day with enthusiasm and joy.

Recently, however, I have joined several group through the internet, where you can meet and become pen pals with other people.  A couple of these groups are especially for those living chronic illnesses, or other long-term health conditions.

It is lovely receiving small gifts, or letters through the letterbox especially when they arrive unexpectedly.  Reading positive, inspiring and motivational words from others can be a real boost to start the day, especially on the days which are particularly bad.  These words are especially special and meaningful when they come from other people also living with chronic illness and therefore can understand the challenges and difficulties that I face living with a neurological condition.  Receiving cards and letters are much more personal than emails for example, and are lovely to keep and look back on when we really are in need of a lift or a reminder of everything good.

Something really special about receiving letters, don't you think?
Something really special about receiving letters, don’t you think?

Writing and keeping in contact with other people also allows me a connection to the outside world and as a way of making new and maintaining existing friendships, as the severity of the symptoms I live with keeps me in the house a lot of the time, and as I am unable to get out of the house unless I am accompanied by another person.

It is not just receiving cards and letters that evokes happiness.  It is also writing and sending cards and letters to others that brings me joy and happiness; the thought that the cards and words that I write will cheer up and help somebody else is also pretty exciting!

Writing and receiving letters is a real joy
Writing and receiving letters is a real joy