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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Chronic Illness, Endometriosis, Health, Interstitial Cystitis, The Present

Making It Through Friday When You’re Exhausted

If you’re hoping this is the post where I tell you there is a magic cure for waking up exhausted, then I am sorry to disappoint you.  There is no little known secret way (as far as I know) to power through the day when you wake up feeling like you need to sleep for a month.  But I digress, as there’s no point talking about something that doesn’t exist.

Today has been a hard day, a trying day where I woke up wondering whether it was even worth the trouble of getting out of bed.  No, this is not laziness as some people may presume, but instead the dragging exhaustion that comes with being chronically fatigued due to the multiple illnesses my body is trying to handle.

Currently, my worst symptoms are coming from my bladder (pain and peeing a million times a day), pelvis (uterus seems to be intent on continually spring cleaning itself), shoulder (well it’s dislocated, so no surprises there) and my back (because my spine is wonky, but that’s a whole ‘nother post I need to write).  So yes, you could say there is a lot going on.

I woke this morning groggy and feeling like I hadn’t slept, which is partly true considering my bladder has been getting me out of bed through the night lately.  But I had work to go to, so there was no option of staying in bed and turning myself into a duvet burrito (yes it’s a thing – Google it).

So up and out of bed I got, dragged myself through the shower and made myself look pretty.  Wasn’t until I got to breakfast, and then to work, that people began telling me how pale I looked.  Uh oh, pale is never a good sign considering I have an English Rose complexion on a good day.

Somehow I made it through work, got my brain to function by drinking plenty of water and inhaling jellybeans at my desk, caught the bus home and am now sitting in front of my laptop writing this.

People may read this and say ‘well, if she made it to work things can’t be that bad!), but that’s a matter of personal opinion I guess.  When you walk in and your Boss asks you what is wrong and comments on how pale and washed out you look, there must be something quite wrong if they’ve noticed.  I usually do my best to hide the effect my symptoms have on me and carry on, but some days it just isn’t possible to hide it all without having some outward visible signs that today isn’t a good day.

Right now, my body feels cold, drained and heavy.  I feel like I need to sleep for a month solid to have some kind of life brought back into me.  Although in the back of my mind, I know that sleep just doesn’t seem to give me the energy and refreshed feeling it used to about 5 years before I was diagnosed.  There really is something funky that being chronically ill does to your sleep, that’s for sure!

Ugh, don’t feel like this post really has a point, so I’ll leave it here.  Maybe I’ll come back when my brain feels a little less sluggish, and try to post something a bit more eloquently written.

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