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

HAWMC Day 14: Trying to take on the world…

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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 14th April: “I feel best when…” 

Write about moments when you feel like you can take on the world.  Where, when and how often does this happen?

Again this is an extremely difficult prompt for me to answer.  For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating.  As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.

It seems now, therefore I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain.  Not all the symptoms, however, are constant, for instance, visual disturbances are provoked by certain triggers, and although these symptoms are not constant, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms as a result, everyday can often feel like a struggle, and can feel that I am never feel my best and able to take on the world.  This is especially the case, when going out after a restless night’s sleep due to pain, which has been the case for a few months.  Furthermore, as the trembling and dizziness is so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.

Living with symptoms which are constant can make it difficult to be able to take on the world
Living with symptoms which are constant can make it difficult to be able to take on the world

Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).

When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal.  I cannot remember, when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.

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The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store, and go home.  However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing.  For me, at this time it was an immense achievement as there were many times when I was unable to go in the store due to my symptoms.  I also notice that when I am able to push through the symptoms, and able to accomplish a goal, I am also able to do more and go to other places too.

Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we are able to take on the world.

 

HAWMC Day 13: In Need of a Dose of Self-Confidence

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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 13th April: Perfect Comeback

Tell us about a time when you felt marginalised or stigmatised by someone because of your health condition.  Maybe at the time you didn’t speak up, or maybe you did – what did you say or what you have said to take back control and let them know that they were out of line?

This is an extremely difficult prompt for me to answer. I guess that I am lucky that I have never been in any situations where I have felt marginalised or stigmatised because of my health condition.  One reason, for this maybe is because the condition which I live with is neurological, and therefore invisible.  My just looking at me, you could never know about the battle I constantly live with regarding my health and mobility.

Sure, I use a crutch when I am out of the house, but even when I am out with the mobility aid I have not encountered any negative comments from other people.  Some ask questions about the reasons behind it, often assuming that the crutch is temporary due to an injury to my leg.  A situation which really does not warrant confronting them about being out of line, I am sure you will agree.   Others comment on the look of my crutch, loving the orange colour of my stick.

A bright and funky crutch can be a real talking point
A bright and funky crutch can be a real talking point

The only examples of that I may have been stigmatised are times when I have been in my wheelchair, and when in shops for example, people have started talking to my carer instead of myself, assuming that I was unable to speak for myself.  Looking on social media, and reading other blogs by fellow spoonies, unfortunately this assumption is widespread with many reporting that they have felt people have spoken to them as if they are stupid when in a wheelchair.  Why this is, I cannot say, but perhaps many are misinformed about disabilities, and failing to distinguish between physical and intellectual disabilities.  These anecdotes suggest that there are many people who are wrongly assuming that those in wheelchairs due to physical disabilities or conditions also having an intellectual disability.

Being in a wheelchair can be lonely and isolating enough without people assuming that we are also stupid!
Being in a wheelchair can be lonely and isolating enough without people assuming that we are also stupid!

In this situation, I could have said something to educate them of the facts.  I could have informed them that there was absolutely no need to talk to somebody else besides myself, as someone holding a degree in Psychology, I am perfectly capable of speaking for myself.  However, I didn’t.  Why is that?

Well, as somebody who was bullied at school, I lack self-confidence and as a result find it difficult to speak up for myself.  Even all these years since, assertiveness is a skill that I struggle putting into practice.  Whenever someone says a snide comment, I am unable to think of a good comeback remark to the person, and if I did, I am too timid to say it to them.  Even when in need of complaining for a bad service or product, I am much more confident and adept at putting my thoughts in writing.  I am somewhat of an introvert, being more comfortable with reflecting on social interactions rather than being comfortable in participating during them.

So, during those situations when a person has wrongly assumed that I am stupid or unable to talk for myself, honestly I am not sure of the appropriate response or how I would respond if the situation arose again.  But, perhaps maybe this prompt has made me aware of the need of assertiveness training and a dose of self-confidence.

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 11: A Spoonie and her Faithful Friend…

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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 12th April: Pet Pal 

Write a thank you letter to your furry, feathery, or fishy friend for always being there for you. How have they helped you cope with your health condition?

Dear Honey,

It seems strange writing you this letter, as for you are a dog, and therefore cannot read.  But this is a letter of thanks.  A letter of thanks to you for your many years of love and loyalty that you have not just shown to me, but to the entire family.  A letter to thank you for always being there for me through the good and the bad.

Gorgeous picture of Honey :)
Gorgeous picture of Honey 🙂

Who knew that when we first got you fourteen years ago from The Dog’s Trust that we would have been on this long and arduous journey together.  It is true that even back then, I was ill; suffering from unexplained dizziness and problems with my legs but we had no idea the cause or that it would be long-term.

Even more incredible was the connection that we developed.  Do you remember the times when you suddenly started crying?  We do, and the times we would try to figure out the reason behind it!  And then we noticed the correlation between the crying and the onset of the dizzy spells that I was experiencing – you were warning me when the dizziness was going to start.  It wasn’t just this, of course, which solidified our connection, but also the fainting spells that happened a couple of years after you came into our lives.  I don’t remember the moments before the attack, however, but I just remember coming to and seeing you standing over my body and licking my face.  How clever and loving you are!

Now of course, being diagnosed with a neurological condition which has deteriorated quite significantly since the time we first brought you home with us, a lot has changed.  For instance, I am home a lot more as I am too weak and unwell to leave the house unaided, and in addition, because of the weakness in my legs, I can no longer take you for walks either by myself or with Mum.

This is a picture of Honey on 'Rhiann Watch' on a day in which I was in bed due to severe dizziness and incredible weakness in my legs.  Was home alone so Honey saw it has her duty to keep me company and make sure all is well!
This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

But what hasn’t changed however, is the love, loyalty and companionship that you show me.  The love that you obviously feel for me; the wag of your tail when you see me, how you bark at me when my legs are too weak and not stopping until I am safely sat on the sofa.  Often my symptoms are severe, and a lot of those days, both Mum and Dad are at work and therefore home alone, but having your presence with me is comforting.  It makes me feel both comforted and protected having you snuggling with me whilst I am lying on our sofa with a  blanket, too weak to move.  Or when the weakness is so severe and stuck in bed, and you will come upstairs regularly and check on me, or lie next to my bed makes me feel loved and well looked after and managed to raise a smile on a bad day.  I feel so guilty on these occasions as I am unable to get up to feed you, and although you do constantly harass me to do so, you never hold it against me that I cannot do so.  You still show me a lot of love and affection.  And I reciprocate; I even love you coming into bed with me, even if you do somehow take up most of the bed!

You have brought so much joy to our family during the last fourteen years; you make us laugh with your silly antics and especially the cheekiness that you are exhume on an almost daily basis.  But most of all I love our cwtches (so cute when you lean against me and tuck your head into my neck) and the kisses that you give when I am feeling at my worst.

I feel so fortunate and grateful that we found you from The Dog’s Trust that September fourteen years ago, although sometimes it feels that you chose us than the other way around.   There is an old saying that ‘a rescue dog loves you more’ and I really think that you are the perfect example as I can’t imagine another dog loving and taking care of me they way you have.  You will always be a loved member of our family.  We certainly will never be able to forget you.  Thank you for everything you have done for me, and always being there when I am in need of comfort.  I know nothing lasts forever, and you are getting old now, but I still hope that we still have several more years ahead of us together.

Lots of love from your loving owner

Rhiann