HAWMC: I made it!

Friday 1st May: You did it!

You’ve crossed the #HAWMC finish line. Recap the past month for us.  What did you enjoy, what didn’t you enjoy?  Favourite prompt?

Well, I have come to the end of the road of this year’s Health Activist Writing Month Challenge.

As in previous years, it has been a challenge.  After receiving the prompts, there was a moment of mild panic, wondering how on earth I was going to write meaningful and relatable blog posts that people will want to read, be able to relate to, as well as writing something original especially as some posts were from previous years.  Have I done this?  I am not sure, only the readers can answer that question!

I needn’t have worried however, once I got started, the words just came out on paper, like it was an involuntary response.  Some days I could not even stop writing and desperately tried to shorten my posts!  I rediscovered a passion for writing, which illness had taken away recently due to the worsening of some of the symptoms I experience daily.

Writing during this challenge however has provided respite from the debilitating symptoms; an outlet for everything that I have experienced and feeling as a person living with chronic illness.  I hope that through writing, I can be an advocate for those also living with neurological conditions and highlight the impact that these can have on those living with them.

Some of the prompts were more challenging than others, and often struggled with the appropriate way to tackle the question.  I felt a deep sense of accomplishment and pride when completing those challenging prompts, and was just one of the many achievements that happened during this year’s HAWMC.

Other milestones included publishing my 300th post, and an increase of traffic and likes on my blog, which is a real validation of the work that I have done.  But again, one of my favourite aspect of this annual writing challenge is reading the entries from the other participants in the writing challenge.  To learn about other conditions other than my own, and the impact that they have on the lives of the writers.  It is interesting to hear other perspectives on what it is like to live with a chronic illness, and furthermore it is always a surprise on the similarities in our lives with chronic illnesses despite being diagnosed with very different conditions.

The only disappointment of the challenge was not being able to complete one of the posts.  I was experiencing a very bad day and was therefore unable to write anything.  Instead I shared the post that I had written the previous year, but at the time I felt like I had failed in the challenge.  But the support I had from fellow participants and readers of my blog, made me see that I had not failed and needed the day to recuperate and reset my body.  It made me see the importance of self-care and the need of rest when we are not feeling our best.  To put ourselves before other commitments.

I would not say there were any prompts that I didn’t like; I really enjoyed them all, particularly writing about the positive impact that my dog Honey has had on my life.  Which of this month’s posts have you had enjoyed reading?

As ever I would really love your comments and thoughts of this year’s HAWMC!  Get in touch through the comment section below or through my Twitter or Facebook pages (links in the header).

HAWMC Day 30: Through Illness You Find Out Who Your True Friends Are…

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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 30th April: I wish I would have known… 

There’s a reason why we have the saying, “Hindsight is 20/20”.  What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary?

Those of you that have been following my blog posts for #HAWMC (Health Activists’ Writing Month Challenge) will know the struggles I faced during my life prior to chronic illness (well, in my case it was not really prior illness just that I was unaware of the condition) with the name-calling and isolation that I experienced at school.  The excruciating loneliness and struggling with feeling so different from my peers.

After being diagnosed with the neurological condition, however, did nothing to help those feeling of loneliness and isolation.  In some ways, these feelings seemed to multiply.  And as the condition deteriorated and facing difficulties with mobility and going out, the friends I had made since school seemed to vanish and was once again facing hours of being alone, stuck inside the same four walls.  The isolation and loneliness were deafening, and all I wanted was strong and unwavering friendships to silence them.

Facing an uncertain future, with a permanent neurological condition and a life-time of symptoms as a result, felt incredibly lonely in itself, but was further exacerbated by a lack of support system outside of my family.

Therefore, the one wish that I would have known at the beginning of my patient journey is the wonderful support system and the chronic illness community that exists online and the presence of the many wonderful people who blog and help raise awareness of chronic conditions on social media.

I wish I had known about the ‘Spoon Theory‘ a wonderful theory coined by fellow Health Activist Christine Miserandino; a thread which unites everyone living with a chronic illness regardless of the diagnosis, and whether it be a physical or mental condition.  It’s a theory which encompasses everyone with a chronic illness, and has grown into a large and beautiful community.

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Proud to be part of the ‘spoonie’ community!

 

I really wish that I utilised social media, in particular Twitter sooner, as the support from fellow ‘spoonies’ has been and continues to be overwhelming.  I have received many lovely messages from people I have never met on those many bad days; just little messages to serve as a reminder that I am not alone. I do not walk alone on the journey of living with chronic illness.

I have made some special and life-long friendships with women I have met through social media and through this blog and other projects.   In many ways these friendships are stronger and more meaningful than any other friendships I’ve ever had before, despite never having met in person.  It is true that friends are like stars; the distance between two people does not diminish the strength of the friendship.  The test of a true friendship, is whether they are there for you when you need them, and with the friends I have made online, I found that they are, and are true friends.  Something I have never found in friends I have made close to home.

Through living with illness, you really find out who your true friends are
Through living with illness, you really find out who your true friends are

I found myself listening to a song Gavin DeGraw entitled ‘Fire’ and there was a line in the song that I felt really summed up the experience of being a part of the ‘spoonie’ community:

Oh ever since the dawn of mankind

Yes, life with chronic illness is difficult, unrelenting and painful.  But it’s easier to carry on living when you are part of a community of other people who are sadly also living with the effects, supporting and commiserating each other through the difficult times and celebrating the triumphs.  It is a comfort in the knowledge that there are people who understand what it is that I am going through and the difficulties that I face as a result of living with a neurological condition.  This is clear from emails and messages I have received as a result of writing this blog; they thank me for sharing the post and writing words that they cannot express themselves.

Our bodies may be weak; some perhaps are even failing but standing together, we are stronger.

HAWMC Day 29: Massaging the Pain Away…

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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 29th April: Product Review

What’s your favourite health-related product?  Share it with your community and tell them why you love it so much and how it has helped you on your patient journey.

The pain that I experience in legs as a result of the spastic paraparesis (stiffness and weakness in the muscles of the legs) is severe and unrelenting.  The medication, pregablin that I take to control these symptoms, however only seem to dull the pain somewhat and as a result I still live with these debilitating symptoms everyday.

Last year, whilst on the cruise, the intensity of the pain had increased prior to leaving for the holiday.  I was prescribed co-codamol on top of the existing medication, but it only helped somewhat, and found that it helped more with the insomnia that I was experiencing as a result of the pain.  My Mum, decided to book a spa treatment for her and myself; a luxurious 60 minute full-body massage.

Research has shown that massage is effective at helping to relieve and reduce pain.  Studies suggest that there are several ways that it does just that.  For instance, massage is thought to increase blood flow to sore, stiff joints and muscles, which are warmed by the extra circulation.  Furthermore, massage also triggers the brain to release natural painkillers as well as helping to speed the flow of oxytocin.  Oxytocin is a hormone that relaxes muscles as well as promoting feelings of calm and contentment.

It was pure bliss! After the massage had ended, I felt incredibly relaxed and found it also lessened the pain also! Bonus! The combination of the massage itself, and the oils used, which is said to ease pain (the masseur asked of any medical issues prior to starting the massage to tailor it to my needs) really helped to ease the severe discomfort in my legs.  We were also if we would like to purchase the oils that were used during our massage, Mum purchased,  to use them at home to massage my legs when the pain was at its worst.

Massages, as I am sure you are well aware of, are incredibly expensive and as I an unable to work because of my condition, it is therefore not an alternative therapy that I can afford.  Obviously we still had the massage oils to use, but as Mum has never been trained as a masseur, the effects was not the same!  After doing some research and after talking to people also experiencing chronic pain, I thought about buying an electric body massager to see if it would work in helping to ease some of the pain.  It would also allow me to massage my legs by myself without relying on another person, especially as I am often on my own in the house.  Being able to do it myself would allow me to be able to massage my legs when I really am in the need of one.

After a lot of online research, I purchased the Homedics Perfect Reach Massager.

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It’s great as its light-weight which allows you to be able to hard to reach areas, and as someone who struggles holding heavy items, it’s light enough for me to be able to massage all areas of my legs.  The massager also has two different speed settings; which allows you to either choose a low setting for a relaxing massage or the high for a more invigorating massage.  I have found that on days where the pain is not quite as intense, the low setting is appropriate speed to relax the muscles in my legs; whereas the more invigorating setting really helps knead the muscles, allowing them to relax and to alleviate some of the pain.

The device also has 3 custom attachments, which includes an attachment which has a wide area for comforting larger muscles (very useful for the legs, I have found), a roller for kneading massage and a spot for targeted relief.

Using it has helped alleviate some of the pain that I experience, obviously it isn’t a magic wand and therefore it still a symptom that I live with constantly, but is a tool that I find helps when the pain is at its worse.  And I have found that its positive effects does not just include pain management, but I have found that after having a massage I am more relaxed and less affected by stress.  I personally love the product and has a place in my comfort box as just one tool in my battle against chronic pain.  And it allows me to be able to have a regular massage without the hefty price tag!

 

 

HAWMC Day 28: H.E.A.L.T.H

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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 creates in the lives of the individuals living with them.  I have learnt 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 learnt 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 be 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 away 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 from doing what you can do!

HAWMC Day 27: To those who have hurt me, teased me and abandoned me…

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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 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 upon a person?  Do you even care? 

What if it happened to you 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’ being 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 learnt 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

HAWMC Day 26: Navigating the Ups and Downs of Chronic Illness…

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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 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.

Everyday 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 dictates 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 our how 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.2010-05-19-gratitudepic
  • 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!article-2238016-147A49E1000005DC-220_634x358
  • 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.  Nuture 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. 

HAWMC Day 25: Word Cloud

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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 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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HAWMC Day 23: Uniform for the Chronically Ill

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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 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 on 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 forseeable 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 anymore?  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!

HAWMC Day 22: Finding Sanctuary Amidst the Chaos of Chronic Illness…

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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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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.