I’m still alive..!

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It’s been 18 days since I last posted Hydrocephalus: Wow moments and leaving a legacy behind.

I am painfully aware that I haven’t put out another post since then and would like to apologise to you, my followers.   Life has gotten in the way but…in a good way.  I’m working on everything I wrote about in my last post and making sure I stay true to my mission in life…to leave a legacy behind and hopefully effect change.  Pretty soon, you’ll be visiting me at my new site and I’m super excited to share it with all of you and the rest of the world! (God willing…)

Aside from that, I have an exam, which I need to re-write next Saturday (4th of June), which has me a tad stressed as I haven’t found the time to do what I need to prepare for it fully.  On top of all that, I have fulltime work and family life, which all require my utmost attention and…now I feel like I’m just making excuses but hand on heart…it’s all true.

I am most thankful and happy to report that I am still managing to Stay afloat as my Hydrocephalus symptoms hasn’t given me any problems…touch wood!

All this makes me realise that life happens, and sometimes, it requires us to perform a juggling act of note.  Fortunately, I am passionate enough about this blog to see it through and promise – I won’t leave you hanging.

So this is me…signing out but not until I’ve personally told you – I’M STILL ALIVE..!

 

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Hydrocephalus: Wow moments and leaving a legacy behind

Journey of life

Talking to a colleague of mine the other day, Ravi K., the discussion stumbled across me having Hydrocephalus. His curiosity peaked, I cautiously explained what it is and how it is treated. It was quite amusing to hear him repeatedly say “So you’ve been cured” leaving me to explain that there is no cure just treatment, each time. He looked amazed…

These kind of discussions unnerve me to a point, at the onset at least, but eventually I reach a level of comfort. It’s unnerving because being in the corporate world and having experiences as I’ve had, unrelated to my condition, have made me aware of who I can entrust this information to and who not. Blatantly put, fears of being judged or even losing my job are at the top of the spectrum. This fear is probably born out of a paranoia that people will think me useless…which is what I feel (sometimes), regardless of the fact that I know I’m not.

However, the need for me to educate and share with the people I’m surrounded by, about this condition and causing a ripple effect in the big pond of this world we live in…is so much more important.

Here’s why:

  • There’s not a lot of knowledge about Hydrocephalus, not many people have even heard of it and more importantly, it does not change who I am if they know.
  • Whatever reaction people have to finding out about my condition and what I’ve had to endure and still do…well, that’s up to them.
  • Nothing I say or do will change the outcome.
  • I have not found a person who has been put off when I tell them I have a medical condition with no cure, just treatment. In fact, their reaction is quite the opposite.

They’re intrigued, curious and majority of the time I see a shift in the way they treat me. All positive though.

There’s always one or two who are just complete idiots, I expect an encounter with them. The people who have the ability to shrink your confidence to a grain of sand and make you doubt yourself, even if it’s only momentarily.  They don’t deserve such power in any way or form, so be aware of them.  These people, I cut off at the “limb” and move on…no loss felt because it’s not a reflection of who I am but clearly shows who they are.

If there’s anything I’ve gained from sharing my story, it’s the fact that I walk away feeling stronger than I do most days – emotionally, spiritually and mentally. I feel “proud” of what I have been through and more proud of the fact that I’ve actually accumulated “Wow moments” along my journey. Many people have a bucket list and feel the need to go bungee jumping or skydiving…for me, it’s surviving every day and getting to spend as much time as I can, with those closest to me.

I’ve said before, I won’t let this condition get me down (we all have our bad days) but it’s the getting back up and saying “Hell yes! Bring it on” or “Why not me” that gets my juices flowing and adrenaline pumping. I could very easily give up and I would probably be justified in displaying anger at God for cursing me with this wretched condition. But, let’s be honest, it’s not gonna get me anywhere now is it. I think all it will do is turn me into a miserable old cow and that’s not how I want to go through life or be remembered.

Lately, I’ve been on a mission to fill my jar of “Wow moments” (bonus if it turns out that I fill more than one).  A journey where I get to leave something behind for my children. A place where they get to go, long after I’m gone, to connect with me on another level. I most certainly will die one day (as all of us will) but leaving these posts behind, these living breathing words, will be a testament to what and who I am. I will leave them (this my children know) but for me, it brings satisfaction and immense peace to know they will have a piece of me for as long as they live.

For now, it’s this blog. I’ll be starting a website soon (watch this space) and fill it with all things related to me. This will be my legacy to my kids. They will be able to visit with me whenever the need arises and feel me close to them. Yes, there will be things that they should probably not know about or be reminded of but what is our life if not filled with both the good and the bad? I’ll be the first to say, life is NOT perfect…Bad things DO happen to good people and I am living proof of that.

The experiences I’ve had, am having, will have, are all what define me as a person. We all have them, these are the chapters of our lives, the stories we all have to tell, one way or another. Hopefully there’s something others can learn from, improve on and even steer clear of.

What legacy will you leave behind? Do you think it’s worth leaving a tiny footprint (your own) on the path of life?

Go on…give it a go.

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Hydrocephalus : Thanks to you…

Kitten High five

The unknown is scary…this is true of any situation in life.

Having a condition like Hydrocephalus, can either make or break you…this too, is true of any chronic illness life throws at you.  I’ve had moments of weakness where I’ve been ready to give up, moments where I’ve literally begged and pleaded with God to end my life and take away the pain.  However, more than these moments, I’ve had times where I’ve gotten back up onto my feet and taken a step forward toward a new breath, a new hour, a new day, a new year…

It’s not easy living life, knowing you have a challenge greater than those who are not touched by illness, and pushing on.  You can sink into bouts of depression and dwell there for days, not wanting to move, not wanting to eat, not wanting to do anything.  I know because I’ve been in this state too.  However, staying afloat in the stream of life, leaves you with little to no other option…

When I allow myself to sit still and think of what I’ve been through with this condition, I am almost left speechless and more so…in Awe of myself but to a greater extent, the love of God without whom, I would not have made it.  Now I know, most people do not believe in God and for that, I do not judge them, it is their choice.  Some have even asked me what makes me believe…I’ll be honest and say, there have been times when I have struggled with a clear answer.  In fact, there is no specific reason…I simply do.  My grandmother, was a great instrument in this part of my life.  She raised me and made sure that I attended church every Sunday.  I knew to say my prayers each night before going to bed and even sang in the church choir for most of my youth.  She laid the foundation of my belief in God and because of this, my experiences in life (no matter how bad) have been faced head on despite stumbling and failing from time to time.  I am by no means perfect, nor am I a model Christian but that’s not what this post is about.

I am touched by the responses and messages I’ve received thus far to the posts I’ve shared.  More than this, I feel humbled to have others share their stories with me in return.  The most amazing part of this, is the friendships I’ve struck with complete strangers…giving me hope for humanity.  Knowing that someone took the time to offer a few words of encouragement, share their own story or offer their well wishes, lifts my spirit to a new high.  I feel blessed and fortunate to be able to share these words/feelings/thoughts as I strike the keys, knowing that someone, somewhere will be reading what I have to say.

So to all of you reading this right now…Thank you!  Thank you for taking the time and thank you for giving me a platform where I can speak, breathe and live (though strong or weak)…it makes facing the unknown seem a little less…daunting.

 

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Hydrocephalus: Finding the words for what I feel in my head

Head

At times, I get a slight throbbing feeling at the right bottom side of my head…I became aware of this a few months ago, though I thought nothing of it at first. Then, a few days ago, it nagged a little more than usual.  I visualized this spot to be where my ETV possibly is, as it left me wondering if this is where it resides.

I ignored the dull throb, thankful that it wasn’t causing me any pain but wondering if it would tip the scales at any moment. It’s like watching someone yielding a knife at you but you’re uncertain if they will actually take a stab at you or not. This feeling is filled with the same amount of uncertainty, fear and anxiety of the unknown.

Usually, the throbbing goes away after some time and doesn’t last too long. However, this time it lasted longer than normal, escalating and making my head feel…I struggle to find the words. How do I describe this?  Maybe something like this:

  • There’s a “full” feeling in my head? Or…
  • It feels as if I have pain but it’s not excruciating and unbearable? Or…
  • I feel off? Or…
  • I feel dizzy and need to blink my eyes a few times? Or…
  • I flex and arch my neck, stretching from side to side?  (This feels like a bad habit I’ve developed, repeated more than once). Or even…
  • Something doesn’t feel right inside my head?

I got through the day and made it to 4 o’clock, time to head home but I was left with these feelings and thoughts…best described as:

  • I start having thoughts of death and having to get home to see my kids…
  • A fear rises up inside of me and I question myself…
  • I never feared death, I don’t fear death but I don’t want to face it either…not yet.
  • I need to catch the train home, get in my car and drive home to my family.
  • I make deals with God all the time…not now, not like this, not here.
  • If I were to collapse on my way, would anyone even know that I have my medical info in my phone?
  • What if someone stole my phone? No, that won’t happen here…this is New Zealand.
  • What if there’s not enough time to get me to the hospital?
  • What if the emergency staff don’t act quickly enough and find out that I have Hydrocephalus?
  • Damn it! I pray all the time that I can just make it home to my kids and husband…
  • I’d rather if something were to happen, that it happen here.
  • I buy bread on autopilot before catching the next train home…because life doesn’t stop around me and my family will need lunch tomorrow.
  • I’m thankful to make it home and flop onto my bed.

Head off

The full feeling in my head hasn’t left me…I feel as if I could literally screw my head off my neck, clear out some of the fullness and rearrange everything back into order. Just a little breather from whatever stress, strain or crap I’m feeling. Like when you wear a tight pair of shoes and give your feet a break by removing the dreaded source of discomfort and pain…even if it be only temporarily.

Heavy and off…that’s how it feels. Happy to hit the pillow and relieved to close my eyes…

A few days later, and I’m left feeling dizzy and nauseous…

 

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Hydrocephalus: Memory and Processing information

StudentI can’t help feeling a bit frustrated at the moment.  I’m trying to learn/study and am starting to feel like a complete failure or more precisely, like an idiot.  I know that I have probably been the hardest on myself all these years and, even though I have moments where I remind myself to just ease up, I still find it entirely hard to do.

I’m in the process of studying for an English test for Immigration purposes.  It’s not so much that I need to study to speak English (I’m a native English speaker of course, with English being my 2nd language) but more a case of me needing to get the hang of the test format.  More importantly and my biggest struggle, is reading a piece of text and then answering questions around it.  Interpreting something, which has been written down and then giving my own viewpoint or a summary of the text, seems like the hardest thing to do as well.  It’s the whole “processing of information” that is literally doing my head in!

Firstly, I think it’s completely ridiculous that I have to prove my command of the English language to begin with (just venting).  But, I shall comply for the sake of the process and because I know…I’m not more special than the next person who has to do the same test.

I passed the IELTS test I done 2 weeks ago but scored lower than I had hoped for in the Reading component by .5!..Simply because I need a certain score to get the desired number of points, I am now being forced to re-do the exam and hope for the best.

I don’t even know if I can claim that I have a “disability” and somehow get more time to complete the test or whatever arrangements they have available for people who have special requirements.  I have no “evidence of brain injury” to prove this and I’m not 100% certain that I can or should classify myself in the “disability” category.  Furthermore, I’m considering a different test altogether called PTE Academic where I believe there are other people in the same room as you, seated in little cubicles with a headset, in front of a computer.  I’m nervous about this type of setting, simply because I REALLY struggle to concentrate with noise around me.

After my first operation in 2007, I became aware of the fact that my learning was affected and no matter how much I brushed it aside, it was a struggle no doubt. I know that my short-term memory is affected and despite doing daily exercises to keep my brain trained and flexing it to improve my ability, I’m still not at the level I’d like to be.  (I see progress…but it’s slow).  After I had my 2nd, 3rd and 4th operations, I realized that the problem was a bit bigger than I had initially thought.  I struggled to read and retain what I had literally just read.  I became frustrated with myself because I used to love reading novels and immersing myself in the story-line but because I forgot what I had read before, I ended up having to go back a few pages…chapters even (I kid you not) just to refresh my memory.  I just gave up and in the end I completely stopped reading books.

I feel frustrated, weak and just want to give up…but, I know that I need to do this for my family (and more importantly for myself).  I would love to get some advice on how you deal with your memory issues but more importantly if you too struggle with processing information…

 

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Hydrocephalus: What if there are stages of Hydro?

Waterfall

For a long time I’ve convinced myself that my Hydrocephalus is a “problem“.

I have had doctors tell me that I don’t have it only to have the next one contradict it with confirmation that I do. Being told things like “You could go into a coma” has been the worst yet. In all honesty, I think I stopped “living” the day my eyes fell on the word Hydrocephalus on my MRI report and I started my frantic search online, to learn everything I possibly could about this condition. A downward spiral into a dark abyss is where I literally found myself…I compare being diagnosed with Hydrocephalus to a premature death sentence.

As much as I’ve read and know, I still feel there’s so much I don’t…Also, the things I already know, I read and re-read too many times to mention. Simply because, I feel a need to understand…understand what this is and understand how I can work it out of my body/life. Almost as if reading about it could wipe its existence out of me or help me fix myself. (I know it won’t). I think the biggest question I’ve been left with: “Is it all in my head?“.

Given this state, I think it’s fair to say Hydrocephalus has consumed me.

It’s not something I’m proud of. In fact, putting it like that makes me feel like I need to change and find my way back to the life I knew before diagnosis. It’s a bit easier said than done…I don’t know what that was…(And I may never get there).

However, here’s what I’m going to attempt. These doctors on my journey, the ones who say “there’s nothing wrong” with me, are the key. Because of what they have said, I’m going to give it the benefit of the doubt and start focusing in on exactly what they have said. I’m going to start living my life as if “nothing is wrong“. You might think this a bit “crazy” and wonder how I could possibly do that. The answer is simple:

I’ve been Floating Faithfully since my ETV, nearly 6 years ago and the 2 years before that, when I was diagnosed and shunted. I’ve managed my triggers with “success” and brought my incidence level down tremendously. I still have my bad days but they are nothing in comparison to what I’ve felt before. Life in general is not perfect, this is something all beings know. Therefore, I accept that my “good” days will not be perfect as they are tainted with a few bad days in between. (As I’m writing this, I’m aware of how nauseous and tired I feel. This could be attributed to just about anything right?)

P.S. This is me, changing my attitude and the way I think.

Maybe the doctor had some method in her madness when I visited the Emergency room. Maybe I “shouldn’t suspect Hydrocephalus at the first instance“. (I wish I could break that way of thinking too).

This has brought me to thinking…what if there are degrees or levels of Hydro? We all have the same condition and experience similar symptoms yet we are all different. So…maybe I’m different to a person who literally has pain every single day of their life due to the pressure in their head. I can’t honestly say that I have this level of discomfort and am thankful because of it. Also, maybe I’m different to the person who has had 100 surgeries (I could not believe that number either but there actually is someone who has had this number of brain surgeries, in fact more). I suppose it’s best understood in terms of the stages in Cancer…stage 1, 2, 3 or 4 or Diabetes…Type 1 or 2…hopefully you get where I’m going with this.

I wonder why it is that no-one classes Hydro the same way…Think about it

Does it mean I count myself lucky or more fortunate than the next person? Well…NO. It does however mean that there is room for me to start living the life I left behind at diagnosis.

I look at my sister-in-law, Bronwyn, a true inspiration to me in the face of being diagnosed with a beast of a condition…Cancer was her diagnosis a few years back. She’s been cleared of it though after intensive treatment. From what I personally witnessed, Cancer did not consume her, though it caused her unbearable physical pain at times…

It doesn’t run her life and she never talks about it. Whether it be her way of masking or dealing with it, that’s another story. She lives her life and makes the most of her time. Looking at her, there’s no evidence that she was ever touched by the disease. You might say that I can’t possibly compare the two but both could cause death and both are serious enough to be taken seriously. Besides that’s not the point of my post.

It’s a known fact that there is no cure for Hydro and so too there’s no known cure for Cancer. However there is treatment for both…Could I safely say I’ve been “treated” for Hydro just as she’s been treated for Cancer?

I want to reach for that level with my condition. I want to say “My hydro has been treated and is under control“…more than that, I want to believe it with all my heart and soul…to embrace life and live.

All publications I’ve read on this condition, does not leave much room for that kind of approach. I wonder if the mind over matter philosophy will work with my approach? If anything, I’d say it’s better than Giving up on myself.

 

 

Thank you for taking the time to read.

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Hydrocephalus: ETV Failure or not…time will tell

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This will probably be the final post on the ETV Failure Guinea Pig topic from me (unless something significant happens and I live to tell the tale)…I have been patiently waiting to see the Neurosurgeon I consulted with last year to discuss the sleeping episodes I’ve been having.  I was hopeful that he would be able to shed some light on what was going on and if he even suspected that my ETV is busy failing, would act on it.  However, the dialogue below is what transpired:

“So I saw you middle of last year is that right?

Yes, that’s right.

So what brings you in today?

I’ve been having sleeping episodes where I go to sleep on a Friday and literally sleep the weekend away.  Occasionally waking up to go to the toilet. I don’t eat and hardly drink anything, I can’t get myself to move and only come around by late Sunday evening.  However, it takes the rest of the week before I feel “normal” again…I’d probably say it feels like I’m…hung over…I struggle at work, can hardly concentrate and just amble through the day.

I see…So this only happens on a Friday?

Yes, thus far…I’ve actually had 3 episodes.  One in October last year, then December right before going on holiday and again in January this year.  If it was one isolated incident, I probably wouldn’t have taken much notice of it but this has happened 3 times now.  At my last consultation with you, you said because I have slit ventricles, I could slip into a coma…this is why I’m concerned and would just like to get some peace of mind…

I do understand.  However, there’s not much that I can do in terms of that.  I mean, I understand that you want peace of mind…obviously.  But, I’m not too sure it will be so easy to do.

I put your plan into place like you said with my last consult.  I contacted my GP on my way to the hospital to call ahead and let the ED staff know I’m on my way.  But, all that happened, was me being pumped full of pain medication and even after explaining that I would need an MRI with flow study to see if something was going on, they insisted on doing a CT scan.

From the notes, I can see there was nothing abnormal about your ventricles…which is good. 

Yes, but…the CT scan wouldn’t have shown anything anyway and that’s why I explained to the doctor on call that she needed to do the MRI.  She discussed it with her supervisor who agreed with me, that it would be what was required, and said that I probably know my condition better than them anyway.  They discussed it a bit more and the attending doctor came back saying that they would do the CT anyway as they needed some form of imaging.  It was apparently too late in the afternoon to do the MRI as people were going home…She  said the Neurosurgical team looked at the scans and were happy with it and that I could be discharged.

So my team looked at it?

Well, that was what she said.  Whether or not they actually did, I can’t confirm that.

I’ve had patients who are REALLY feeling sick and who’s CT shows enlarged ventricles but on the day of surgery when I repeat the CT, the ventricles have gone down and the pressure is gone.  I’ve even had shunts partially blocked and then unblock itself…So it might just be that when we do the CT Scan, your ventricles might look fine because right now, you look fine to me.  The MRI might not even show us anything either…

I know I look fine but I can tell you, I haven’t been feeling well.  My headaches aren’t as bad or frequent as they used to be either though I do wake up with a full feeling at the back of my head and over the middle.  If I do wake up with a headache, it usually subsides anywhere from 30 minutes to about 2 hours later and I feel fine again.  I can also understand what you’re saying about the pressure changing.  In fact when I woke up one Monday morning in December, when the sleeping episode happened again, I had my eyes tested the Wednesday  as the headache had subsided but wasn’t gone.  The pressure was apparently high but not high enough…so I’m assuming it was high on the Monday morning when the headache started and was at it’s worst?

Let’s just pull up that scan here and I can have a look at it.  The difficult part about your ventricles is that they wouldn’t show us much anyway.  I could order the MRI for you but if you are fine, it won’t show us anything.  If I look at you now…you look fine to me….You’re walking and talking, I can understand you.  Most patients I see are sick, really sick and most of them are even in a coma which then requires me to act.  In your case, there’s not much I can do because if I do operate on you when you are fine, I’m going to hurt you…every time we operate on you, we hurt you.

I understand what you are saying but I don’t want to go into a coma…I’m really scared of that happening.  I’d like to prevent it if at all possible.

I can certainly understand that but with your condition, it’s a bit difficult to preempt what’s going to happen.  I never follow-up any of my other patients who have shunts or ETVs.  I could have a follow-up with you through my Public clinic…you did say that you didn’t have insurance.  Is that right?

I do have insurance but it only covers 80% and with all the kind of investigations and tests you do with this condition, the 20% I have to pay is quite a big amount…

Do you have anyone who can attend the ED with you if you are feeling bad?  A friend maybe or your husband?

I had a friend  come to the hospital when I went to the ED but by the time she got there, I was too drugged to care or know what was going on around me.   They just pumped me full of morphine and sent me home…as I told you earlier.

Do you have family here?

Just my husband and children.

Well you’re going to have to get your husband to go with you next time and push back on your behalf.  He’ll have to tell them that you’ve been to see a Neurologist, you’ve seen me and you’ve been to the ED many times before with these symptoms.  They will have to get the Neurosurgical team to come and have a consult with you.  If you are too ill at the time to speak for yourself, that will be your only option.

Yes, but I did that…and it didn’t work…

The only thing I can do for you is refer you to a Neurologist who can then do the MRI with flow study, a lumbar puncture and see what else could be going on. 

I’ve already done that when I previously saw the other Neurosurgeon.  He too referred me to a Neurologist who just put me on this drug and then that, going from anti-depressant to anti-depressant.  She even referred me to a Neuropsychiatrist but that didn’t help anything.  Her final words to me were “we don’t know how to help you”.

There’s really not much else that I can do for you either.  I’m a surgeon.  If there is something wrong that needs fixing, then I can do that for you but looking at you…you look fine to me…

Is it fine for me to be feeling nauseous and dizzy every day of my life or struggle to concentrate?

No…it’s never fine to be feeling like that.

What about the sleeping episodes?

The sleeping episodes, could be an indication that the flow through your ETV is slowing down but we won’t know that without an MRI…it especially might not even show if you are fine and not symptomatic.  There really is nothing else that I can do for you…

Well, I think that’s it then.  Thank you for your time.

I could refer you to the Neurologist if you like…

No thanks…I don’t see where that will get me.  Besides, I’ll probably just have the same outcome I had the last time I saw one…”

He closed the door behind me as I walked away…

 

I wish I had the words to describe exactly how I was left feeling after my consult but 25 minutes later, I paid my $200 for the consult and left the hospital after shedding some uncontrollable tears in the bathroom.  I think I went into a state of LOCK DOWN…

After I published the ETV Failure Guinea Pig post, my colleague asked me a question to the effect of how I’ll know if something is wrong with my ETV.  I responded: “If you don’t get a blog from me for a while, then I guess you’ll know something’s up“.  The quote in the picture of this blog somehow seems appropriate – in more ways than one.

Am I now allowed to feel like giving up?

Thank you for taking the time to read.

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Hydrocephalus : When I just feel like giving up…

  
Some days, much like today, I just feel like giving up. If I were connected to a life support at this moment in time, and were able to, I would pull the plug myself.  
I’m not in pain (Thank God) but can’t say I feel good either. I woke up this morning at 4am and tossed about for just over an hour. When I eventually had to get up, my body would not co-operate. I forced myself out of bed and physically, as if the rest of my body didn’t get the message from my brain the first time, fell back down onto it. I thought it was just me feeling tired from waking up so early but…
I ambled along and forced myself forward and onward into the day. However, I struggled with my cognitive skills and just everything in general though I fought against the current with all my might. 

I’ve been feeling dizzy and nauseous the whole day, almost like one who’s had a triple dose of Tramadol and Morphine combined.  What the hell is going on! I feel like screaming and yet I know that won’t do any good.
Coming back to wanting to pull the plug…Why? Well, I’ve just had enough of Hydrocephalus. I want to throw in the towel and say “There…You won! Just let me keel over and exit out of this life“. 

I hate not knowing if something is wrong.    Doing a Google search to try and make sense of what I’m feeling doesn’t help when I read about ETV closures that were treated too late and leading to sudden death of the patients…Yes, some might say “Don’t do that!” But, this is a reality I must face regardless of the fact that it might not happen to me.

I hate having to wait 2 whole weeks to see a surgeon just to get his opinion on what’s “possibly” going on. Having to wait even more time for him to do one test or the other and tell me one of two things: 

1. Nothing is wrong or 

2. You need an operation. 

There is no middle ground with this condition…

Will I get sicker? Will I lose even more energy and will to live while I wait?  I’ll probably feel better in a day or two and wonder what I was even going on about.  This is a roller coaster ride for life and I have a non-refundable golden ticket with front row seats.  

I just want to give up…I have no will to fight you anymore. 

Thank you for taking the time to read.

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Hydrocephalus: Who will take care of me when I can’t?

Serenity

A concern most people have…I’m sure. Something, which insurance companies prey on…and, in hindsight understandably so (I’m sure they would justify it with “it’s the risk we take at the cost of making our money”).  With that said though, no insurance company will touch you with a feather if they know you have a condition like Hydrocephalus…they could just as well have already signed your death certificate.

We’re all going to die right?  It’s a necessary part of life…but I digress…

I for one, have been thinking about it more and more. Before I was diagnosed with Hydrocephalus, in 2007, it was the furthest thing from my mind. As I get older and become more and more aware of the cognitive challenges I have, I have a fear rising inside of me. I left a country whose Government simply doesn’t look after its people. A country where my parents and grandmother still live…I fear for their well-being. It gets me thinking about myself…this new country I’m in. Will I really be better off?

I somehow don’t think so. Yes, it appears the government does look after the elderly in terms of benefits. But, will that “benefit” be enough to sustain me should I no longer be able to work and provide financially for myself? What happens when my money runs out? Would any amount of financial planning really be that beneficial especially since my date of death is unknown?

Some might even argue that the medical system is “good” and that you’ll be taken care of.  Having experienced the medical system, that may be true for someone who doesn’t have a (as I’ve been nicely told)”complicated condition” as me…I have no faith in the care here either.  More on that in another post…

These are morbid thoughts, I know.  But, as a friend told me, “one cannot help but have morbid thoughts when living with a chronic condition“.  Also, no amount of brushing it aside because of this fact, will change any of it.

I have a husband and, God willing, should he survive longer than me, will take care of me. Or will he?

I briefly touched on the topic with him, telling him about people in the Facebook groups I had read about, who either don’t/can’t work, work part-time, made job changes or have had to quit because of their Hydrocephalus. His response “Oh s***, looks like I’m going to have to work harder for longer and have everything rest on me“. Charming response, wouldn’t you say? Admittedly, it’s not quite the words I anticipated to hear. In fact, I know for sure, if the roles were reversed, my answer would not have come close to his.

In all fairness, I do wonder though…Is there some understanding I can gain from what he said, some perspective? If I were to put myself in his shoes, I guess he is justified…? It hurts to have heard him give such a response. And, as I am true to my nature, I analyzed it and justified the reasons behind his choice of words and came to the conclusion that “he didn’t mean it that way”. As usual, I camouflaged my response and just said, “Don’t worry…I’ll try to push myself harder and make sure I keep my job.  Mind over matter as my Grandfather used to say“. The truth of it though is, I don’t have any guarantees that things will work out that way.  Also, with this condition, it’s easier said than done ’cause quite frankly I AM NOT IN CONTROL OF HOW I FEEL  ON A DAILY BASIS.  

I told him that “I will try to figure it out and once I have a solution, I will share it with others who have Hydrocephalus…so they too can benefit“.

Truth be told, I don’t have the answers but…I do have a “backup plan” (well…sort of). Knowing that I have had to fight a few battles with my health issues, I realized that I might require some changes to be made. I am prepared to do what it takes to survive and provide for my family. If it means giving up the office job I have to pack shelves at the local store then so be it. I will not let my Hydrocephalus or cognitive challenges stand in the way of being a functional human being.

I am a strong-willed and independent woman.  This has sometimes been a “not so good” (though not bad) trait. However, it is the one thing that has seen me through some of the toughest situations. I believe this, together with a determination that is second to none, will get me to where I need to be.

So what if I end up giving up my office job? So what if it means I need to earn a little less? I believe that at this very moment in my life, I am giving the best of my ability to keep my kids happy, healthy, fed and in school. Their future is what I am here for. My only desire for them, is that they make a success of their lives so that they can take care of themselves when the time comes. I might not even need to put my plan into action…but the fact that I have thought about it, gives me some form of peace.  I have mentally prepared myself if nothing else.  More importantly, it gives me acceptance of not being able to change certain things…And, reminds me of the Serenity prayer hanging in my Grandmother’s living room.

I discussed the matter again with my husband later that day but only because he brought it up. He wanted to know if I would take care of him, should the need arise. (It showed me that I had hit a nerve with my question and that he had been giving it some thought). I had the chance to tell him: “Unlike your answer to my question, I would not hesitate to take care of you. No matter how bad it got…I would be there for you. Even if it meant I had to feed, dress or bathe you“. He got the message and apologized for his earlier response saying, “Of course I will take care of you. How could I not? You’re my wife“. I take some comfort in knowing that at some point (if need be), he will take care of me.  The point is, no one really knows what they’ll do when the time comes.  Circumstances at the time might dictate your response or reaction, regardless of your relationships AND despite what you say now.

With that said though, I pray that I may never need to be taken care of. But, I will trust that I am surrounded by people who love me enough to do what’s right.

Have you thought about it? Do you have some insight to offer?

 

 

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Hydrocephalus: ETV Failure Guinea Pig

Storm

The past weekend was one for the books.  I had another episode of sleeping the days away.  I was going to write this post with a morbid feel to it…because that’s how I’ve been feeling the last few days.  Then, a little while ago, I decided to hell with it!  I won’t.  Because, doing so would be like saying I’m giving up.  Doing so, would mean that I have given up on myself and refuse to fight.  I might not be able to eradicate this condition from my body but I sure as hell can choose how I am going to react to whatever it throws my way.

On Friday night, I was tired…more so than normal.  It was a long and hard week, so I wrote it down to that.  Also, my 5-year old daughter is still getting into bed with us and delivering some much unwanted sleep disturbance.  Therefore, when I woke up on Saturday morning not because my body had, had enough sleep but because I had a pulsing throb in my head…I knew (before opening my eyes) it wasn’t going to be a good day.  I however, did not expect it to be a repeat of my previous occurrence…as well as this time…

Needless to say, I slept all day on Saturday, Sunday and most of Monday (thankfully a public holiday).  My body rebelled against any form of housework.  I just about managed to shower and get back into my PJ’s.  Taking comfort in the solitude of my bedroom after going upstairs, just meant sleeping in my sons bed or sleeping on the couch…purely to be in the presence of my husband and kids.  I feel bad at these times because it feels as if sleeping is taking up the quality time I should be spending with them.  However, I literally cannot control it and no matter what I do at this time…my eyes refuse to stay open.  Brain tired and limbs refusing to move, I managed to skip lunch and dinner and with the odd cup of tea or glass of water, nothing else passed my lips.

My head was spinning and at least the headache was bearable and didn’t last too long.  I remember popping some Tramadol but nothing major, I’ve had worse.  I was so nauseous and feeling terribly seasick, just moving an inch made me want to hurl…I never did though.  Added to this, I’ve had a nagging little feeling at the bottom back of my head, just behind my ears, which throbs from time to time.  It’s more annoying than anything else.

Based on my previous experience I refused to subject myself to a visit to the Emergency room and thought it would just pass.  However, it’s now 6 days later and I’m still not feeling myself.  I’ve managed to get through work…just…and the only difference this time is that I am unable to concentrate fully on work (this is new).  I feel as if I’m struggling a bit and feel as if nothing is getting done.

I’m frustrated and more than this, I will admit…I’m scared.

OK…that’s where the morbidity stops!

I’ve decided that it’s no use worrying about this.  What’s my major concern? (You might wonder).  Well…I am growing aware that this is becoming more frequent and since I was told there’s a possibility of slipping into a coma, I’m seeking help.  I’m patiently waiting for a date to see a Neurosurgeon via the public health system.  I realize that this is going to take time and I probably won’t see him for a few more weeks…months even.  It’s not within my control…  All I need is confirmation that my ETV is still functioning as expected and that these sleeping episodes aren’t anything serious.

I haven’t experienced ETV failure before but I know what symptoms to look out for.  I am going to regard myself as a guinea pig to see where this leads to, for anyone curious enough to know or who possibly has an ETV as well.  From my interaction with others who have actually had these failures, I certainly have reason for concern…only time will tell.  One thing I know for sure, if asked whether or not this is affecting my Quality of life again, my answer will definitely be YES!.

I’m left wondering if it really is such a good idea to disregard my symptoms above if they are void of vomiting and persistent headache.

I’ll keep you posted as best I can…

 

Thank you for taking the time to read.

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