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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 on given prompts.

Sunday 26th April: Make it a great day!

Life is full of ups and downs.  Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going.  Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There is saying that says ‘Life is like a rollercoaster.’  And this saying, perfectly sums up what it is to live with a chronic illness.

Every day there are many ups and downs as a result of our chronic illnesses.

There are plenty of ‘up’ moments, little moments that make the day worthwhile and gives us a reason to smile.

However, inevitably there are just as many ‘down’ moments, usually as a result of the onset of symptoms, and other effects that are a result of living with a chronic illness.

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It is true that we as individuals have control over how we are feeling and therefore influence how our day is going.  However, as those of living with a chronic illness will relate, often our symptoms and our long-term health condition very often dictate the type of day we are going to have.

Take yesterday, for instance, as my Mum has the week off from work, we were planning a trip to a local out-of-town shopping centre, which I was really looking forward to, especially as trips out, particularly those with Mum and Dad are rare.

However, on the morning of the planned trip, I awoke feeling exceptionally weak.  During the night, I experienced excruciating pain in my legs, and in the morning, I found that they were weak and barely strong enough to hold me up, never mind being strong enough to allow me to walk around shops for most of the morning.

Furthermore, the constant dizziness that I experience as a result of the brain stem lesion was exceptionally intense.

As a result, therefore, I felt that I was too unwell to go on the planned trip, and instead spent most of the day lying on the sofa beneath my comforting duvet whilst my parents went shopping.  It was disappointing and frustrating not being able to do something that I was so looking forward to, and just one example of not being in control of how our day is going.

So, on these bad days, and the days in which we have no control over our day as a result of illness, how can we help change our frame of mind to make a bad day seem less so?  Here are 5 tips that can help change our day:

  • Practice gratitude: In my experience, using a gratitude journal and practicing gratitude can greatly help change our mindset.  In these gratitude journals, it is useful to write at least 3 good things that happened to you during the day no matter how small or insignificant they may seem.  In my experience, in my doing so it helps to change your negative mindset into a positive one, and furthermore, it also helps to make you appreciate the little gifts that each day delivers.

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    Rewarding yourself: After a long day battling with symptoms such as pain, nausea, dizziness is a feat in itself! By planning to reward yourself, for getting through a difficult and stressful day, or for finishing a task despite dealing with debilitating symptoms it can help to give yourself something else to think about besides the symptoms currently being experienced.  Rewarding ourselves gives us something to look forward to despite the stresses of living with chronic illness. The reward does not need to be big or expensive; sometimes it’s finding pleasures in the little things in life.  My favourite reward?  A delicious bar of chocolate to savour at the end of the night!

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  • Listen to a favourite song and sing along!: Research has shown that listening to music that you like can actually alter your mood and alleviate feelings of depression.  Therefore, make your own ‘Feel Better’ playlist in your Mp3 player that includes songs that work for you and which lifts your mood.  Choose positive and uplifting songs that you can sing along to, such as the brilliant ‘Happy’ by Pharrell Williams.  It could really help change the outlook for the day!

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  • Honour yourself and your body: On these days, where we feel that we have no control, is the most important time to practice some self-care.  It is important to practice these rituals when we need it the most.  Nurture yourself by taking a warm bath, schedule a massage, cozy up with a book, or relax with a cup of tea and enjoy some quiet time.

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  • Smile!: Research has shown that in fact smiling really can turn a frown upside down.  When things seem bad smiling can actually make us feel more positive and happier about the situation, so let’s all try smiling!  And surround yourself with positive people and positive things – the positivity board that I have set up in my bedroom really does help when I am experiencing bad flares as a result of my condition.  It is a reminder that the negative situation is not permanent, it’s only temporary and as everything that is brief, it will soon pass.

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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 on given prompts.

Saturday 25th April: Word Cloud 

Use Wordle to make a cloud full of words that come to mind when you think of your blog, health condition, interests or community.  Pro Tip: Use a thesaurus to make the branches of your ‘tree’ extend further.

Well, again this has been a post that I have completed before.

In previous years, I have used the opportunity to share all the words that I associate with myself and the neurological condition that I live with.

This year, therefore, I have decided to share the positive words that I personally associate with the spoonie community.

A community that I have personally been involved with for the past three or four years.

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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 on given prompts.

Thursday 23rd April: Health Activist Choice 

Write about whatever you like!  Got a great story, opinion, or tip to share?  Tell us here.

On days like today, when we are giving free rein to what we can write about, it can be difficult to know what to say.

Add, a very bad day because of debilitating symptoms and it’s even more difficult.

I looked through books and pages on the internet, but due to the way I was feeling, all I really wanted to do, was to throw on a pair of pyjamas, crawl into bed and stay there for the foreseeable future (or at least until the symptoms subsided to a manageable level).

And then it hit me! Why not write a post about pyjamas?

In my opinion, pyjamas are very often the top of a spoonie’s wish-list.  In my experience, when I am doing some online shopping, or on the rare occasions I venture into clothing stores, I am always browsing the nightwear section and lusting after more lovely and comfortable pyjama sets.

And why is this?

As a spoonie myself, it often seems that when I am experiencing a bad flare in the severity of my symptoms, as I am experiencing currently, then I spend a lot of time wearing pyjamas.

Even when I haven’t worn pyjamas for the entire day, I still like to get changed into mine straight after dinner!  My perfect day would involve wearing pyjamas whilst enjoying a film and munching on some popcorn!  Bliss!

Pyjamas, you could say are the uniform for the chronically ill!  There are several different reasons for this:

  1. The fatigue is so bad that we do not have the energy (or spoons) to get washed and dressed
  2. They are so much more comfortable and comforting than regular clothes
  3. They are easy to put on and are warm
  4. They are fun!

Fashion bloggers are always providing us with new inspiration on the latest fashions and advising us what to buy.  But, unfortunately for spoonies, pyjamas are often left out, so I thought I would share some of my favourite pyjamas:

Duvet Day Pyjamas – Next £26
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These sum up the spoonie lifestyle brilliantly, don’t they?  Everyone needs a duvet day sometimes, but these days are much frequent when living with a chronic illness.  Perhaps a pair to wear on bad days that tell friends and family that you are struggling.

Stripe Slogan Pyjamas – Next £18
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I love these PJ’s as soon as they saw them as it immediately made me think of my cruise that we are going on in September!  And the slogan provides a little bit of positivity which is very much needed during a flare or relapse

Butterfly Print Pyjamas – Next £16
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I could not resist adding these as they have butterflies, which as you all will know by now is one of my favourite things!

Florence + Fred Butterfly Print Pyjamas – Tesco £10

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Need I say any more?  And with ‘Do Not Disturb’ adorning the top, it’s a great way of telling people to stay away when life gets tough (know how sometimes we need to be left alone and be by ourselves when things are really bad).

F + F You are My Sunshine Pyjamas – Tesco £10
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I saw these and thought they would be a lovely gift to put inside a care package for a person with chronic illness.

Very practical as PJ’s are always desired and needed when living with a chronic illness, but also remind them that they are loved and well-though of.

Those are some of my favourite pyjamas that are out there at the moment – what are yours?  And you love pyjamas as much as I do? Would love to hear your thoughts!

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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 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes, as a result, can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.

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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 on 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, 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 every day.

The support and friendship among the ‘spoonie’ community are astounding, and every day I am discovering new friends who are special and making friendships that will last for many years to come.

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