Blogging, Chronic Illness, Health, Life, The Present

Coming Up For Air

I feel like I’ve been breathing underwater lately. Lots of things on my plate in life with physical health decline, worsening chronic pain, more responsibility at work and other issues – it’s just gotten on top of me!

It’s at times like this that many non-essential things in life fall by the wayside, and blogging has been one of them. I promise I’ll be back more often soon though, but at the moment I’m still trying to claw back all that I have lost health wise.

Tonight though I missed my little blog, so I thought I’d post these words that I came across tonight. They’re very poignant in my life right now.

Talk more soon,

C xx

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Chronic Illness, Health, Life, The Present

Keeping Up

I try to keep up,

Alter my appearance to suit.

Be happy and bubbly,

And helpful to boot.

But the more I attempt,

To be a ‘normal’ human being.

The more changes and differences,

Instead I am seeing.

I’m an incredibly tough judge,

When it comes to myself.

If I’m being really honest,

It’s affecting my health.

My heart quickly races,

My mind will often swirl.

In this moment I realise,

I’m far from a normal girl.

I only work part time,

Haven’t attended University.

Live in chronic daily pain,

And have had my fair share of adversity.

Whichever way I look at it,

I just don’t measure up.

But I can’t live any kind of life,

If I don’t fill my own cup.

So enough with the brave face,

And cheery put on demeanor.

It’s time to take care of me,

And be my own *Redeemer.
*No offence meant God, you know that you’re my Number 1 Redeemer ❤️

Chronic Illness, Health, Hospital, Life, My Story, Surgery

Snorkeling

Snorkelling is an art form

Swimming just beneath the surface

Looking for things that dwell within

Is the main purpose

The same principle can be applied

To my health I’ll explain

As my health issues, no matter how quiet they are

Within my body they remain

Controlled as best I can

With medications and treatments

The ailments of my body

May be quiet and symptoms silent

But still they remain within my body

Just under the surface

Waiting to flare at any opportunity

To wipe the faint smile from my face

As they’re only held off

By pills and Botox procedures

The issue isn’t cured

Only paused in its adventures

Once the pills stop working

Or the Botox wears out

Symptoms flare up with a vengeance

Of that there’s no doubt

Then I’m back to square one again

Trying new meds or undergoing the surgical knife

Slightly fearful in the knowledge that

My health history is my life

Blogging, Chronic Illness, Health, My Story, The Past, The Present

What I’ve Become

As I sit here this night on the eve of my birth, I have begun to consider what may be my worth?

How my health issues have drastically  changed the outcome, of the life I dreamed about versus the person I’ve become.

I had ambitions of attending University, to study a degree in Physiotherapy.

Instead I spent so many months out of  work, with money tight and medical files my main source of homework.

Fatigued, exhausted and in pain, at times I felt the life I lived was in vain.

I’ve pushed myself hard when my body didn’t loudly protest, and plenty of times when it would have been wiser to rest.

There have been so many guinea pig moments, with new meds, acupuncture and natural potions.

All in the quest to make myself well, when some treatments and side effects have made my life Hell.

And what have I done with all of this ‘so called’ spare time?  Learnt an instrument, exercised, nurtured myself and studied part time.

But through it all I’ve learnt a lot, despite the trials and challenges I never forgot.

Proving to myself just how strong I can be, and how patient I am when waiting is key.

So although this life isn’t what I imagined, I am so glad I never abandoned.

That I never stopped trying or gave up for long, because I’ve grown so much and quitting always felt wrong.

I’ve done what I can with this life of mine, and of that I am proud and will be for all time.

Chronic Illness, Health, Hospital, Interstitial Cystitis, Surgery, Uncategorized

An Ode to Botox

I have had a neurotoxin injected, into a muscle that has over-reacted.

My bladder is constantly in spasm, and I wanted to throw it into a chasm.

So off I walked into surgery, in the hopes of relieving my purgatory.

Not having Botox injected into my face, but instead in my bladder which seems a strange place.

A very long and large needle they used, afterwards my bladder felt a little abused.

As I awoke in a hospital bed after the event, I hoped that my bladder would now be repentant.

That it would relax and behave as it should do, so that I wouldn’t have to spend so much time in the loo!

So far so good although it’s early days, my bladder is learning to behave in new ways.

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Chronic Illness, Health

Is Chronic Illness A Life Sentence?

Today I am pondering days.  The countless days, weeks, months and years I have been ‘sick’.  All of the days since I was first diagnosed with a chronic illness, and even the days before that when I suffered with symptoms but remained undiagnosed.

Those days could be seen as a waste, and many, many times I have seen them as such.

I have wished away many days when I was feeling awful, my symptoms were flaring and I was barely physically able to accomplish anything, let alone the long list of things that I had dreamed up in my mind to do.

I have placed all my effort into wishing for healthier days when I can accomplish more than is currently possible in my life.  Instead of appreciating what I have, no matter how little it may seem, I have wanted to change and manipulate my current situation into something that it just isn’t possible for it to be.

Wishing and hoping for things to be different is a common theme in chronic illness, and it doesn’t matter what physical or mental health issue you might have.  Hoping for a better future (or a different now) isn’t wrong – in fact I think for me it is a  kind of coping mechanism to get through the hardest of days.  Sometimes I think if I could just wish hard enough, or behave well enough, or take care of myself perfectly that things will change for the better.

The reality is though that no matter what I do, things don’t always get better.  Chronic illness has it’s own timetable and will wax and wane as it pleases depending on a number of factors including medical treatment, my body’s ability to cope and self care.

So, is chronic illness a life sentence?

For me, the answer to that question depends on the day.  On the really bad days, of course your chronic illness feels like it’s a big part of your life that you can’t control or get rid of.  But on the better days when your health issues can co-exist with your daily life and you can accomplish things on your to-do list, is it such a big deal as it is on the bad days?

In short, I think that whether chronic illness is a life sentence comes down to how you perceive it.  Yes, so many of us (including me) are living with health issues that are currently incurable, and require ongoing treatment just to manage them.  That is a tough gig on a day to day basis, to be managing something that you know deep down isn’t going away any time soon.  But at the same time, I try to see my chronic health issues through this lens – ‘you are a part of my life, but you are not my whole life’.

So what I want to say to you today is –

Whether you’re out there in the world today getting stuff done, or at home on the couch, in bed or in the bathroom having a rough time – know this:

You are doing the best you can with whatever your body and the universe have come together to give you today.  Don’t beat yourself up about it – no matter what your day has brought, you’re living it and that is to be commended.  Hey, if you’re eating ice cream in your pyjamas at 3pm – good on you!  No judgements here, because we all know how some days the only things we have the effort for are those that bring comfort and are essential to our own self-preservation.

Most importantly of all – you are not living a life sentence, you are just living a life.

Caroline xx

PS – Let me know your thoughts on this post!  Do you see your chronic illness as a life sentence?  What helps you get through the bad days?  I’d love to hear from you 🙂

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Chronic Illness, Health, Hospital, Interstitial Cystitis, My Story, Surgery

Why I’m Excited About Having A Very Sharp Needle Inject A Neurotoxin Into My Bladder

At the end of this week, I will be heading into an operating theatre again.  This will be the seventh operating theatre I’ve seen the inside of in the last 3 and a bit years.  I’m not entirely sure how I feel about that, knowing that I’ll be subjecting my body to it’s 7th general anaesthetic…

This time surgery is not for my Endometriosis, but instead for a procedure to hopefully help with my Interstitial Cystitis symptoms.

This surgical procedure is known as Intravesical Botox.  In English, that basically means having a very sharp needle introduced into your bladder to inject Botox into the bladder muscle.  The science behind it means it works by paralysing the bladder to an extent so that it’s not so overactive and doesn’t spasm all the time like mine is currently doing.

Sounds pretty nasty, right?  I hear you asking  ‘how can she be looking forward to that?’

The simple answer is – I’m looking forward to symptom relief.  I can’t wait to live without constant bladder pain, to visit the bathroom less than a million times a day and just for my bladder to feel more comfortable and less like it’s constantly bouncing up and down inside of me.

I have had this procedure done once before, and it did give me excellent symptom relief, so I am hoping for the same to be true this time around.  Interstitial Cystitis is a truly horrible thing to live with, so any relief is more than welcome in my book!

Bring on Friday!

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