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Experiencing Instead of Wishing of Better Days…

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Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.

On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.

On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.

Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!

On this day, however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out.  I made the decision, not to make plans, but instead, if I made it to the cinema than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.

The cinema, as expected did not happen thanks to the unrelenting symptoms that were severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.

At first, I was thoroughly disappointed in myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.

Although at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case.  I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.

Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time
Perhaps by winning certain battles in our lives with chronic illness, we can find ways around certain problems to win the battle another time

Chronic illness often wins many battles in our lives; however, it does not win all of the battles.  There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.

Think about the last very bad day you had due to chronic illness…

  • Did you still manage to get out of bed?
  •  Go for a shower?
  • Do small chores around the house?

If yes, then congratulations, you triumphed over your illness.

It’s a small victory, but a victory nonetheless.  We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.

That is partly the reason for choosing to go out when it would have been easier to stay within the confines of the four walls where I feel safe when the symptoms are it’s worse.  I did not want my neurological condition to control my life and dictate how I spend my time.  I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.

Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them.  That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:

we know what we are, but know not what we may be

We know what our lives are with chronic illness and as an extension who we are because of it.  Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives.  Who we can be when we refuse to let illness have the main spotlight in our lives.

If we did, who knows where we may end up?
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The Invisible Fight of Invisible Illness

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Imagine walking down a busy street.  Look at the faces of the people walking past you in the street. Every one of those people will currently, or at some point in their history has faced a battle. One of them may be living with a battle that I currently face; a battle of living with an invisible illness.

Invisible Battles, Known Only To Those Fighting Them

Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other conflicts, however, are invisible; concealed from everyone else, like a deeply hidden secret – a struggle known only by the person carrying the burden of the fight.

There are so many fights when living with an invisible illness
Be kind; for everyone you meet is fighting a hard battle.

I am one of those people who is fighting an unseen, invisible fight.  If you were to see me, you would never know that I have a neurological condition — the only signs being when I am staggering along with my crutch.  Or on the days where weak legs confine me to the use of a wheelchair, even then I am met with stares silently asking why I need such aids.

"I am one of those people who is fighting an unseen, invisible fight—an invisible battle of living with an invisible illness." Share on X

For Me It is Not An Invisible Illness, It Is My Life

The personal fight I face as a result of my neurological condition although may not be visible to others, for me, however, is very real.  For me, it is not an invisible illness; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will buckle, although no one can see.  For others, the world is still, unmoving.

The world in my experience, however, seems off-balance. As though everything is slightly tilted. At other times it seems as if there is constant motion.  Every day I fight against fatigue and for the ability to do everything that everyone often takes for granted. Such as being able to go shopping, take a shower or cook a meal for the family.

"For me, it is not an invisible illness; it is my life." Share on X
Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them
“Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Every day is a battleground between myself and my body.  Like with any battles in history, there are times I am forced to surrender. Such as those days when my legs are so weak. Or the dizziness so severe that I am unable to get out of bed.  The days I am forced to surrender to my condition and stay confined to my bed.  That’s the thing about living with a chronic illness; it is often a balancing act between surrendering to our symptoms and fighting against them.

"Every day is a battleground between myself and my body." Share on X

The Fight Against The Assumptions of Others

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, people greet our new circumstances with understanding and compassion, friends and family make allowances for our limitations.  As time passes, however, the understanding and compassion dissipate, replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.

The grievance at the chores still left untouched as illness still will not allow me to attend to them. My parents, although supportive and understanding will sometimes feel embittered at finding certain chores untouched. Some days have to be waived for a day on the sofa due to debilitating and unrelenting symptoms. And they are unaware of this as to look at me, you only see a healthy woman.

To Live With An Invisible Illness Instead of Surviving

It may seem that the neurological condition takes a significant amount of space in my life; it, however, does not own or control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition. Particular baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

The Fight of Invisible Illness
A profound quote from Tangled!

This unseen condition may fight for control for every facet of my personal life.  Now, however, I have chosen to fight back. Although I have not won control for every area of my life, I have elected to manage aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

'Fight Song' is an empowering one for those living with invisible conditions
‘Fight Song’ is a song that is on my self-care playlist
"I have chosen to live side by side with my condition instead of merely enduring life with it." Share on X
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HAWMC: I made it!

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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 on this year’s HAWMC!

Get in touch through the comment section below or through my Twitter or Facebook pages (links in the header).

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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 on 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 lifetime 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.

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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 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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