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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 28th April: H.E.A.L.T.H 

Use ‘health’ as an acronym and come up with words that represent your Health Activist journey.

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H is for HOPE
As I have written in earlier posts, hope is a vital ingredient for life with a chronic illness.  Hope acts as a survival mechanism for when we are at our lowest ebb.  It is what motivates us to overcome the obstacles blocking our path, to push forward and carry on living.  Hope is the line between creating and maintaining a happy and meaningful life despite chronic illness or being consumed by the negativity that illness can create.  Hope allows us to have something look forward to when it seems our future looks bleak.
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E is for EDUCATING
The aspect I love is the reciprocal nature of being a ‘health activist’.  As much as my blog and my writing, as well as my presence on social media, helps to educate and inform others of neurological conditions such as the brain stem lesion I live with or the impact of chronic illness in general, I also enjoy learning of other chronic conditions and the impact that these create in the lives of the individuals living with them.  I have learned so much about other chronic illnesses from reading various blogs that I love reading and by getting to know others on social media; in fact, I have even been known to diagnose patients on certain medical dramas from what I have learned from other bloggers and health activists!
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A is for AWARENESS
An important part of living with a long-term health condition is self-management.  Therefore, to be able to implement a self-management programme it is important to be aware of every aspect of your particular chronic condition.  We need to be aware of potential triggers that can induce symptoms, so we can stay away from them as much as possible and not exacerbate the condition.  It is important to also be aware of anything that eases symptoms for when they do occur.  It is about making positive conscious decisions to help ease symptoms as much as possible and to improve quality of life.
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L is for LISTENING
It is so important to listen to our bodies.  Your body knows what it is capable of, and so we need to listen to them, especially if your condition is one which tends to fluctuate.  In order to be as well as possible, we need to be aware of any changes in symptoms and act accordingly.  An example, and one which I have done a lot lately, after listening more to my body, is taking a rest when needed.
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T is for TWITTER
I have come to absolutely love Twitter and use it a lot to communicate and connect with other health advocates, bloggers, and spoonies in general.  As well as using it as a tool to promote my blog and the writing I do as a result, but I have also built a lovely support network with others who or have had experiences with chronic illness.  It is a great tool to use as a way of sustaining a role in health activism, by tweeting information, links and sharing other blogs regarding the condition being represented.
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H is for Hobbies
Living with a chronic illness, it seems can often take over our entire lives.  It really does, everyday symptoms dictate to us how our day is going, what we can and cannot do, and so on. It can make us feel that sometimes we have no control over our own lives.  It is important therefore to have a life outside of illness.   One way to do that is to find hobbies and interests away from illness.   It is great to have hobbies as a way of distracting oneself from debilitating symptoms and helps alleviate the effect of them on our lives.

Don’t let what you can can’t do interfere with doing what you can do!

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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.

Monday 27th April: Bye, bye, bye… 

Living with an illness, you are more likely to face people who don’t understand your daily struggles.  Sometimes, those people can be inconsiderate and hurtful.  Have you ever wanted to tell them how you really feel, but didn’t feel like you were able to?  Now is your chance! Write an open letter to the people who have hurt you.  What would you say to them?  What lessons would you like them to learn?

This is a tough post for me to write.  There have been plenty in my life over the years who have failed to understand the daily struggles of living with constant dizziness.  And as a result of failing to understand my struggles, and the neurological condition that I live with, many friends have failed to stick around in my life, and have lost many friends it seems as a result of chronic illness.  It seems that you really do find out who your true friends are when you are in need of friends the most.

Many people have hurt me and dented my self-confidence.  The hurt that I have felt as a result of hurtful words or abandonment, has made it difficult for me to be able to trust people.  I am now protective of my heart, who I let in my life and who to trust.

And all because of inconsiderate, intolerant and unsympathetic people. Writing can be a cathatric experience...
To those who have hurt me, teased me and abandoned me,

Words cannot describe how much you have hurt me.  

Words cannot express how low your cruel words and actions have made me feel.  

Do you have any idea that your words and actions can have such a lasting impact on a person?  

Do you even care? 

What if it happened to your son or daughter?  What would you think, or say to those who have hurt your children?  

Would you look back on the way you have treated me and feel remorse and shame?  Or have you forgotten about your hurtful and cruel behaviour?  

I often wonder if you have, as I wish I could. 

All of the name-calling, abandonment, and ostracisation have had a lasting impact on my life, and my self-esteem.  

The names that you used to call me, still stays with me, ‘freak’ is one such example.  

We were only kids back then, and suppose because of this I am able to forgive you.  Back then, nobody, not even myself, my parents or the doctors knew what was wrong with me. I was just experiencing vague symptoms; symptoms that made me different from everybody else.  Symptoms that made it easy to be picked on.  If we were all aware of the neurological condition that made me so different from you and everyone else, would it have made a difference?  Would have you shown me compassion and tolerance instead of the cruelty and intolerance? 

Dealing with the name-calling and bullying was bad enough, but what hurt even more than that was being ostracised and left out.  To have friends turn on me and abandoning me.  I wonder what is wrong with me for people to walk out of my life; for people to walk away and never contact again.  Like I never even existed.  Am I really such a horrible person to be with for you never to speak to me again?  Does it have to do with me as a person?  Or is it because you cannot handle my neurological condition? 

I know that I am unlike most of your other friends.  I know my condition prevents me from being able to go out at night clubbing or go on spontaneous trips.  I have difficulties in places such as the cinema, or shopping malls which makes outings very difficult for me.  But is that really a reason to end a friendship?  To just walk away and never talk to me again?  I like to think I am a good friend; with those dear friends, I have made online I try and be the best friend that I can be and be there for them when they need me.  Giving how many friends that have just up and left in my life, I have doubts.   At this moment I am writing this whilst watching One Tree Hill, and watching the strong and lasting friendships develop onscreen makes me jealous of these.  What is so wrong with me, that I have never had friendships like those?  What is wrong with me that no-one has wanted to be my friend for very long? 

Although these experiences have had a lasting impact upon my life and can be attributed to my lack of confidence and self-esteem, I do not want to hold on to bitterness or hatred towards the people, like you that made me feel so worthless.  I forgive you.  Yes, I have decided to forgive you because I want to be the bigger person.   I hope that since we last met, you have learned compassion and tolerance towards those people who are different to you such as those living with chronic illness and disabilities.  

I hope that when you have children you teach them to be kind, compassionate and thoughtful towards those who are different.  

Teach them to stand up for those who cannot stand up for themselves. 

From 

Rhiann

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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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