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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Thank you for taking the time to read.

Hydrocephalus: Gaining insight from the “outer” Family circle

Family…the units we are born into, without any choice.  From the time we are born, these people teach us about love and life in general.  They are the one’s who build our foundation and help us plant our roots.  Some we love, some not so much…it really doesn’t matter because the blood coursing through our veins is what joins us forever.

A very good friend of mine once recommended I read a book called The 5 Love Languages.  Even though this book is more for relationship counseling, it gave me insight into what my love language is in any given relationship.  For me personally, it’s a combination of Acts of Service and Words of Affirmation.  In fact, truth be told, I find myself naturally doing this more and more for the people around me and simply because it ties in with the saying “treat others as you would like to be treated”.

I think there’s a thin line between members of our family actually LOVING us and the language they use to interact with us, which can become a bit distorted at times.  From what I have gained out of the rest of the post to follow, I have to emphasize this.  I DO NOT DOUBT THAT MY FAMILY LOVE ME, they’re just using the wrong love language.

This is the feedback I received from two members of my “outer” family circle:

My Aunt Annette (married to my father’s baby brother)

  1. What is your relationship with me?
    • My niece by marriage
  2. Do you know what condition I have?
    • Not really.
  3. What is your understanding of this condition?
    • None at all
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • No
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent.  How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • Sorry, I have never seen you ill.
  6. What was your initial reaction when you found out I have this condition?
    • Shocked, and sad and wondered how are you coping.
  7. How did you feel when you heard I needed surgery?
    • Not good at all and not knowing what the outcome will be.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I do not know, cause you so far away with little contact.
  9. Have you noticed any significant changes in my performance?
    • No
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Prayed that the op will be successful and you will be back to your normal self again, cause I do not know what the outcome of the op was.
  11. Do you feel that (at any time), you changed towards me?  If so, how and why?
    • No.
  12. What frustrates you most about me having this condition?
    • I would not know cause I do not know how you react when you feel sick.
  13. Do you have any questions for me?
    • Yes, have the ops helped you in any way and do you think you will have any more ops?
  14.  If you could say one thing to me, what would it be?
    • Jehovah willing, I pray that you feeling much better now and we are promised that sickness, pain and death will be a thing of the past soon – please read Isaiah33:v24 and Rev 21; 3 & 4. And read with a open mind

What have I gained from this feedback?

My Aunt lives in a city about 8-10 hours drive away, same city as the rest of my family (Mum, Dad, Brother and Sisters).  I can understand much of what she has said in terms of not having any knowledge and since we lived so far apart.  I found it interesting that she said “Shocked, and sad and wondered how are you coping.

How often don’t we get a thought in our head about someone who is sick or going through a tough time and even think out loud “I wonder how so-and-so is doing?” But, we never actually follow through on the thought and find out…

My answer (in a nutshell) to her question was this :

The condition I have, Hydrocephalus, is a chronic incurable condition.  The only treatment for it is the OPs I’ve had:
  • either a shunt being placed into the brain to re-direct the excess fluid (this has been removed and was my first OP) or
  • a hole drilled into my third ventricle, called an ETV, for the fluid to bypass (my last OP).
Unfortunately, neither one of these are permanent solutions and could lead to further operations in the future.  The shunt can become blocked or you could develop an infection which will require further surgery to replace the shunt.  The ETV can close up over a period of time and therefore either will be re-done or a shunt will need to be implanted again.  
Unfortunately as I said, there is no cure and I would love to say the OPs helped but that’s not the case.  For now, I have my faith and I manage the condition as best as I can making changes and limiting my triggers.  I have an appointment next Wednesday, 30th with a surgeon to discuss some issues I’ve been having.  
I hope that makes sense, if not let me know and if you have any other questions, feel free to ask.  Prayers are always welcome too 🙂

 

My second-eldest sister, Glynnis

  1. What is your relationship with me?
    • You are my younger sister.
  2. Do you know what condition I have?
    • Now I do because you explained it to me.
  3. What is your understanding of this condition?
    • When the fluid on your brain is not regulated properly it affects you in ways that you don’t remember anything. You blank / zone out.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • NO
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • Not living with you makes it difficult to answer this question. But should I live with you I will support you 100%. 10 is my rating.Out of everyone in my life, I do believe this to be true. As my sister, you have always shown compassion and concern for my well-being.
  6. What was your initial reaction when you found out I have this condition?
    • Sad and hurt. Couldn’t understand that an intelligent person like you can have this.This is something which I feel I NEED to comment on. Hydrocephalus does not discriminate. It can touch anyone, from any walk of life and there are no barrier lines. I am not immune and in no way more special than the next person.

      Accepting this condition as part of me, has been the one thing I have HAD to do. It defines who I am now and I think, in it, I have found my purpose too. I don’t question why me, but why NOT me?

      If I can make a change in the Hydro world, then I’ll die a happy woman. In saying that though, I do bargain with God on a daily basis and purely because my kids still need me. I accept death when it comes no matter what because I know in the end, it’s not up to me.

  7. How did you feel when you heard I needed surgery?
    • Very scared. I was ignorant about your condition at the time and had so many questions about your well being afterward.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Yes. In a direct way. You call a spade a spade. You have become fearless!
  9. Have you noticed any significant changes in my performance?
    • You are self-driven. Being focused on your goals motivates you to be “hands on.” And you don’t waste time.
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • You were pregnant at the time and my fear was that you or the baby can die. But thank God you both survived the operation.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • This didn’t happen overnight but I started to feel distant from you since we stopped sharing our intimate moments with each other. It could be that I am not fully aware of your condition that it disabled me to be honest with you.
  12. What frustrates you most about me having this condition?
    • Oh boy when you : SHUT DOWN. You focus on what must be done and everyone must wait. It can be a good thing but at times I need to know if my sister is okay.

Being raised by my grandparents, everything else aside, I had to learn to fend for myself. I was my protection, in the palm of God’s hand, and that spelt out how my life HAD to be. I know my personality but in hindsight, I’d say it was the circumstances which molded me into who I am today.

  1. Do you have any questions for me?
    • How do you feel…Is all of this overwhelming for you?

It does become overwhelming at times (when I actually allow myself to think about it). Life is busy and sometimes it feels like that’s not a good thing but it helps keep my mind occupied so I don’t dwell on it too much. I don’t like self-pity so only when I am all by myself, I break down and deal with it at the time, allowing the emotions of it all to take over. I sometimes can’t believe that I’ve been through this or have Hydrocephalus to begin with. I do tend to forget that I do especially when I feel “fine”. It’s not easy but I get through it as best I can.

  1. If you could say one thing to me, what would it be?
    • I am so proud of you whether you have or not have this condition. You are a true inspiration to many of us. And this is a fact. I love you my beautiful sister.

What have I gained from this feedback?

My sister’s responses conjured up a lump in my throat.

It gave me insight into taking a deeper look at myself especially after the last post from my colleague and friend, Laureen. I did not have an easy life growing up (my next book to be published on Smashwords – watch this space) and developing Hydrocephalus later on in my life just feels like the ultimate cherry on this cake. I don’t do self-pity, as I said before.  I have my moments of weakness and break down but I grow stronger after that. It’s like metamorphosis though, each time feels more painful than the last especially since you’d expect it to get easier after the last time I visited this low level place.

To give you some perspective on my upbringing…I wasn’t raised by my parents but by my grandparents in a different city about 8-10 hours drive away. There were many times when I felt like an orphan and more as if they don’t care about me. Being older though and having a family of my own, I can understand that my parents didn’t have it easy and did the best they could under the circumstances. Let’s face it, parenting combined with life = damn hard…most times. I don’t hold it against them. However, I do have strong moments when I literally feel like I am “out of sight, out of mind“.

I feel almost justified in saying that, especially since I was hoping to get a response to this questionnaire from each one of my family members (Mother, father, brother and older sister). That obviously did not happen and I feel a tad disappointed to say the least. My older sister sent her apologies for not completing the questionnaire and honestly said she did not know enough to answer it adequately. This is fair enough.  However, if it were me, I would have made the effort at that point to find out more. It’s easy to feel as if they don’t care because their non-response warrants it. However, it is still their choice. This is a light bulb moment for me…Not everyone in your life, no matter how close they are to you or tied by blood, will have what it takes to deal with this condition. I can only deal with my own feelings and what I assume is the reason for them not responding.

As far as I’m concerned in any situation such as this, it’s the other person’s loss and I should just move on from it. I tried…supplied the opportunity and the saying comes to mind “You can take a horse to water but you can’t make it drink“. And, as someone else added to that phrase “But, I know how to hold its head down“. I don’t like this approach either…I will NOT force my condition on my family. They each have a choice to ask me any number of questions or comment on just about anything…They even have the fullest right just to show compassion and ask “How are you doing?“. As I said before, I don’t doubt that they love me as I’m sure they do but…

This would be the part in my first post where I said “Is it wrong for me to feel as if this VERY BIG THING in my life should be just as BIG to those around me?

What this little exercise is teaching me is that it’s not the blood that courses through your veins that will determine the amount of care or empathy you receive. As can be seen in my gaining insight from colleagues post.

Family is not about blood.  It’s about who is willing to hold your hand when you need it the most

Be thankful for the people who do show you the least bit of care. For me, it’s the concern that comes at a pivotal moment where I’m feeling so down and ready to give up that matters most.

Watch out for my next post where I share the responses from my sons

 

Thank you for taking the time to read.

Feel free to leave a comment, share this post and connect with me via any of the following:

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Hydrocephalus: Gaining insight from my children

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In the final post on Gaining Insight, I’ve decided to post the responses I got from my children.  I have 3, 2 boys and 1 girl aged 6.  She is too young to understand all of this and yet, she played an important part in the last 3 operations I had.  I was 5.5 months pregnant with her at the time and underwent 3 operations over a 3 day period.  You can read all about it here.

My boys have very kindly agreed to be part of this blog segment.

Each of my boys are so different in their personalities. Jamie…so much like his Dad, doesn’t show emotion easily and prefers not to dwell on negative emotions. He prefers to think of me as being “fine” and would rather I not wallow in negativity. He will attempt to see the positive in a situation and eagerly points it out to me. (I suppose it’s his way of trying to make me feel better).

Gabriel on the other hand…this boy takes after my soul in so many ways. Very attentive, kind and displays such loving care especially when I am unwell. There are times when I will be feeling ill and trying to mask it.  I’ll notice him looking at me intently, observing and without prodding, he will inquire about how I’m feeling, if there’s anything he can do to help or even just offer to make me a cup of tea. It’s something which comes naturally to him and makes me proud. He definitely speaks my love language in so many ways…

Both my boys were rather young at the time of my diagnosis and when I had my operations. From the responses, I can see that they attempted to answer, especially Gabriel, with their current mentality. I could almost feel him immerse himself into the situation as if it were unfolding at present.

This is what they had to say:

Jamie-Ethan – Age 14 (Age at diagnosis and first OP – 5, Age at OPs 2,3&4 – 7)

  1. What is your relationship with me?
    • Son
  2. Do you know what condition I have?
    • Hydrochephales
  3. What is your understanding of this condition?
    • Something about a fluid in the brain
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • No
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • 7
  6. What was your initial reaction when you found out I have this condition?
    • I didn’t know what it was but now I have a better understanding, but still not sure.
  7. How did you feel when you heard I needed surgery?
    • I was very young at the time and can’t really give an answer.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Not sure
  9. Have you noticed any significant changes in my performance?
    • A little
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not sure
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • Not sure
  12. What frustrates you most about me having this condition?
    • Your memory frustrates me the most…not remembering things.
  13. Do you have any questions for me?
    • No
  14. If you could say one thing to me, what would it be?
    • Try to live your life and enjoy each day. No matter what happens, we’ll deal with it as it comes. If you need another OP and let’s say you don’t make it, then at least you know you fought and gave it your all. I’ll know that too…it won’t be your fault. Just try to enjoy the time you do have and the time we spend together.

How grown up is that?!

Gabriel – Age 12 (Age at diagnosis and first OP – 3, Age at OPs 2,3&4 – 5)

  1. What is your relationship with me?
    • You are my mother.
  2. Do you know what condition I have?
    • You have Hydrocephulas. 
  3. What is your understanding of this condition?
    • I know that sometimes you can’t organize things and you get lots of headaches.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Whenever you come home and you don’t look like you feel that well. 
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • I’d give myself a 9 because I always ask if there’s any way I can help.
  6. What was your initial reaction when you found out I have this condition?
    • I felt really bad for you because then I realized why you had some struggles.
  7. How did you feel when you heard I needed surgery?
    • I felt like your hydrocephulas was getting worse and I felt concerned. 
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I’m not sure. 
  9. Have you noticed any significant changes in my performance?
    • I haven’t noticed any changes 
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • I was worried that you might’ve gotten hurt.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • I don’t feel that I’ve changed towards you.
  12. What frustrates you most about me having this condition?
    • That it causes you a lot of stress.
  13. Do you have any questions for me?
    • No.
  14. If you could say one thing to me, what would it be?
    • I wish you didn’t have Hydrocephulas.

 

The only talk my daughter and I have about my Hydro, is when she notices the scar on my tummy or head after I wash my hair or she brushes it. She’s normally curious and just asks “Is that where the doctor cut you?” and, then winces as if in pain and gives me a cuddle.
All she knows is mum’s not feeling well at times and in turn gives me TLC with a lot of kisses and hugs. She’ll say things like, “Mum are you tired? You can have a nap mum you know (matter of factly)” or “You can just relax“…

I feel bad for my children. I’ll be honest and say, it wasn’t all that easy to read what my boys had written. If I had a lump before, then this broke the banks of my tears.

Unlike the previous posts, I had a face-to-face discussion with each of them separately to answer any questions but mostly to clarify anything for them. I started with Gabriel on a Saturday morning when we went for a walk, just the two of us.

I explained how I had developed the condition, how it makes me feel and what happens when I feel unwell. He is a sensitive child so I decided that, showing him photos of children with Hydrocephalus (who have not had treatment), would not be a good idea. So… I brought it down to his level and used the character, Megamind as an example. He smiled but immediately understood what I meant when I told him what happens to children with all that excess fluid pushing against the skull.

It was good for me to explain some things to him that didn’t make sense or were unclear because it gave me insight into what he actually knew and understood vs what he didn’t. Going forward, I have no doubt in my mind that he will always have my best interest at heart. His responses, showed me that he thinks about this more than I was aware of. My hope through all of it though, is that it doesn’t stress him out too much. I feel a bit guilty about this, especially since I realized that while I thought I was masking so well, that at least one person is fully aware of what’s happening at that time.

Later the same week, I had a chat with Jamie… 

As with Gabriel, I explained the things he too didn’t understand…where it all began, what meningitis is and the effects. He was too young to remember anything from diagnosis to the last 3 OPs, as previously mentioned.

When asked what he thought would be good support from him to me, he asked if he could provide support by helping out around the house and taking care of his siblings when I’m unwell? I said this was perfect and would certainly help. I further explained the importance of when I ask them to be quiet and when I need to concentrate, as these things affect me too at times especially when I feel unwell.

I explained why I’m always tired and need to rest. I told him about my sleeping episodes, my fears and asked him to be the backup when his Dad is not around. Check up on me when I’m not well, be alert and not take it for granted that “Oh, mum’s just sleeping“. I realize this might be asking a lot and placing a big responsibility on his shoulders. However, I’ve taken into account his personality and weighed up the odds of not telling at least one of my boys, about the possibility of going into a coma, in the absence of their Dad. He is very mature for his age and has proven to me, that I can depend on him when I need to. His brother on the other hand…lets just say, his sensitive soul guides me on this one.

Obviously my memory, or lack thereof, is a frustration not only for him but for me too though for completely different reasons. There is nothing I can do about this for him though…He’ll normally get frustrated with me and say things like, “I told you blah, blah, blah! Why can’t you remember“. Or “You’re always tired“.

In the end, he felt that he understood so much better and that so much made sense to him.

What have I gained from my children?

For starters, they cleared the misconception I have that no-one cares or understands. I’ve learned that breaking it down and explaining things in ways that they can understand or grasp is probably key. Also, we all react differently in any given situation…be it our personality, maturity level or how we relate to things, etc.

If I was worried before about who will take care of me one day when I can’t, then I can comfortably say now, I’m not all that worried anymore. It’s not about me placing responsibility wrongly on my kids but it’s my kids showing me in so many different and little ways, that they actually do care and given the right information (or instinctively), will act in my best interest. I’ve also learned that it’s OK to lean on them and not always feel like I need to be strong. They accept me in my weak moments and love me regardless…

This little exercise has definitely brought about a shift in our house for the better.
I am proud of my children and thankful for the lessons they teach me on a daily basis.
Just as any parent, I always want what’s best for my children. I will always feel the need to protect and shield them from any ill emotion or harm. This has been my biggest driver to date. However, the biggest lesson I’ve learned from my children is…I don’t always need to protect them, that they worry about me just as I do about them and more importantly that…IT’S OK TO NOT BE OK.

 

Thank you for taking the time to read.

Feel free to leave a comment, share this post and connect with me via any of the following:

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Hydrocephalus Interview: Gaining insight

For a long time, since diagnosis, I’ve known that my Hydro journey would be my own. It’s crazy but despite knowing this, I can’t help feeling a sense of abandonment by the people who say they love/care about me.

Is it wrong for me to feel as if this VERY BIG THING in my life should be just as BIG to those around me? Some time back I posted this, asking the question who will take of me when I can’t?.  Even though the answer to this appears to be a resounding “no one“, I can’t help but still be hopeful nonetheless (with the hope placed on my kids).

Life really does suck sometimes. We go along everyday so absorbed in our own world and never once looking up to notice what’s going on around us. Much like what happens in today’s society where we are all looking down and focusing on the devices in our hands. We are UN-involved and uninterested majority of the time…I say this because, in all honesty, I too am guilty of this but I TRY HARD NOT TO BE.

I sent out a survey a few weeks back, to a few friends and family to find out just how much they actually know about my Hydrocephalus. Some sent back their responses which I greatly appreciated, simply because of the insight it gave me. Some said they would send it back and get around to doing it…but still haven’t.

One or two said they didn’t feel comfortable doing it because they didn’t feel as if they knew enough to answer the questions. This is fair enough and offers me some further insight. Others…well they simply didn’t respond, which is also OK especially since it was voluntary.

I emigrated from my home country just over 4 years ago and therefore don’t live close enough to my family for face-to-face contact. To give you some perspective, I e-mailed the survey to:

My brother to answer as well as share with my parents to fill in, my sisters (I have two), my brother and sisters-in-law, aunt, cousin, friends and colleagues (ex and current).  My two boys said, without hesitation, they’d answer my questions and eagerly done so last night.  In my opinion, they were too young to understand at the time what was happening but I am curious to read what they have to say. I even asked my husband whom I know hates paperwork and wasn’t in the least surprised at his reluctance to answer it. (He still hasn’t but I’m working on it 🙂)

Am I disappointed about some of the non-responses? To a degree…yes I am. What can I do about it?

Well, if nothing else, I see an opportunity to educate those closest to me. A way to open up and share my journey with them as I never have before.  The beauty about it is that they get to ask me a very important question AND I get the chance to answer it honestly.

I even completed the questionnaire from my own point of view to compare how close (or off the mark) our responses are.

This is why, over the next couple of posts, I will be going through the responses from those who took the time to answer my questionnaire. I’ll also include my responses to them where applicable.

My hope (as with all my posts), is that someone else will find value in it and gain some insight. Feel free to copy the questions and use them for your own understanding if you like. Or, use as a baseline to formulate your own.
These are the questions I asked:

  • What is your relationship with me?
  • Do you know what condition I have?
  • What is your understanding of this condition?
  • Do you know the signs and symptoms to be aware of when something is wrong?
  • On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive when I’m feeling ill?
  • What was your initial reaction when you found out I have this condition?
  • How did you feel when you heard I needed surgery?
  • Do you think I’ve changed since my diagnosis? If so, in what ways?
  • Have you noticed any significant changes in my performance?
  • What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any).
  • Do you feel that (at any time), you changed towards me?  If so, how and why?
  • What frustrates you most about me having this condition?
  • Do you have any questions for me?
  • If you could say one thing to me, what would it be?

Join me for my next post and let’s see if we can gain some insight together.

Thank you for taking the time to read.

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Hydrocephalus take a number

  
Earlier this week, my Hydro symptoms reared its ugly head. I woke up at 4:30am with a throbbing headache, mainly in my eyes…I was miserable and felt very lethargic.  

I made it through work that day and hoped it would ease up. Lasting all day with constant nausea and dizziness, I was only too happy to put my head on the pillow that night. By the time morning came, the pain had not subsided and was still wreaking havoc inside my head. I was worried…What was this and why was I feeling this way after such a long time? A question, I did not have a ready answer for. I knew my faith had been lost in the medical system and there was no way I was going to waste my time with another Emergency room visit. Somehow though, I had the nagging thought “What if this is my ETV?“…

There’ll always be that nagging thought…no matter how much I want to believe that I am OK (whatever that is).

I had a thought to get my eyes tested because I knew if my pressure was raised, they would pick it up. I remember reading in one of the Hydro groups that someone had their Hydrocephalus diagnosed after having one done. I figured this was the best option since I knew the visit to ED would be a fruitless exercise of death by morphine (with my spirit being killed slowly due to not being helped effectively). I slept with my pillow propped up that night in case it helped with the flow of CSF.

The Wednesday morning early, I went to my appointment and even though by this time, the headache had eased up to a bearable degree, I figured it was still worth the visit. My pressure was high but not high enough for the optometrist to warrant further investigation. However, this was a sure indication to me that 2 days ago, when my headache started, my pressure very well could have been high enough to be a cause for concern. The thing however, was that we were booked to fly out to Brisbane the Friday morning early (Christmas morning). I got a prescription from my GP for some Codeine (a backup in case of a Hydro headache) and I told my Hydro to take a number.  

My family and I had been planning this holiday for a while and there was no way in hell I was letting my Hydro put a damper on the festivities. I learnt my lesson well the last time we were here and started drinking plenty of ice cold water. At the first sign of a headache, I popped some painkillers and even found going for a swim, to be not only relaxing and refreshing but good for my headache too.  I just don’t give it enough time to breed and grow into something I despise. I sleep when I feel tired and (touch wood) my hydro hasn’t been a problem for me…yet.

This time of the year and especially where we are now, is all about quality time with our family. (My brother and sister-in-law and their kids). My soul longed for this time for so long and there’s no way I’m going to give Hydrocephalus the upper hand. I know I can’t control it with a magic switch but I can make sure I do everything from my side to ensure I have a good break. When the new year comes, and we’re back in NZ, I will face whatever I need to. I plan on getting myself checked out and making sure my ETV is still allowing a good enough flow. I hate the uncertainty, I hate not knowing and I hate being a slave to my Hydro.  

This is the reason why…you can take a number Hydro and get in line. I’m with my family now and ain’t nobody got time for your shenanigans!
Thank you for taking the time to read.

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Hydrocephalus: For all those who will be spending Christmas in hospital…my heart goes out to you.

Sun will shine

As Christmas is on the horizon, I think of all the parents and children who are going through a challenging time with their Hydrocephalus. For all those who will be spending Christmas in hospital…my heart goes out to you. However, I pray that the time together will be the silver lining for you. I pray also, that you recover and heal fully and can soon put this time behind you.

It’s never easy when the person you love has to endure pain or suffering. It’s not easy watching a child you love more than life itself, and have so much hopes and dreams of a bright future for…seem as if they are facing the end. Remaining positive is just about the hardest thing you ever have to do and seeing the light at the end of the tunnel is not easy…I know. For sanity’s sake…you need to push through and expect the best, no matter what. If you feel that this is unfair, if you are angry, then allow yourself to feel that way. Let the emotion play itself out and let it subside – you are allowed.

At times like these, I realize just how lucky I am to have my family around me…I am thankful that I get to spend another Christmas with them.

We come into this world with nothing and we will leave this world with nothing. However, the people around us, the one’s who touch our lives deeply…will always remain imprinted on our hearts. If you or a loved one, is currently facing the unknown of yet another brain surgery, take heed in the fact that the sun will shine again for you. Seasons change literally from one day to the next. You might be feeling like it’s all gloomy at the moment but the sun WILL shine again for you. This will be a time when you can sit and look back on…and be thankful that you made it through.

The world carries on outside regardless of time standing still for you within those hospital walls. This seems to be a cruel reality. But, the next Christmas will be yours…a time when you will be thankful for all that you have and this time, right now, will become a distant memory. The gloom of this moment, will be overpowered by the joy of the days to come.

Do not become disheartened. Do not give up. Do not let this one moment in life, determine the rest of what’s left.

Hydrocephalus is a condition, which we have no control over. I think it’s safe to assume that everyone touched by this condition pretty much hates it’s guts. Take a stand against it. Show it you will not give in, will not succumb and will not go down without putting up the fight of your life. Take what it throws at you, keep your head up high and walk away, knowing that you gave it your all.

I pray that this festive season, you find the things that matter most to you. And, know that somewhere in the world, someone is thinking about you and cares about what you are going through…right now…because I do.

 

Thank you for taking the time to read.

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Make time for yourself, your life and your loved ones

Time

A few months ago, I read a post (Productivity Tip #2 – Schedule your time (and stick to it)), by my fellow blogger friend, Terence Brown of Help Grow Change

After reading, I set a challenge before myself and decided I would give it a go…In doing so, I found time I never knew I had!

I have always been one to do things for everyone else with never enough time or energy left for myself. I think there is a reason why today’s title is in the order that it’s set out. All 3 these things are important. How many times have you heard the saying, “You can’t do anything for anyone else if you don’t take care of yourself first“?

Well, before I took on the challenge, I was of the strong opinion that “I don’t have time to do anything else“. So I made a few changes…

  • I changed my attitude towards not having any time to saying I have time.
  • My mindset changed and so did the amount of hours I had spare. I realized quickly that I was actually wasting time, unintentionally of course. I changed it as soon as I had the revelation.
  • Every spare moment I had, I did something to fill the gap. For example, I would put a load of laundry into the washing machine and tumble dryer and then go do something else. (I no longer wasted time ironing clothes, even though I love doing this while watching a movie). I didn’t need to babysit the machines and they would happily do what they were designed to do.
  • I also, cleaned the house during the week. Vacuuming after or before supper time, making sure not to miss out on the required daily tasks, which took precedence.
  • Things like bathing my daughter, homework, cleaning the kitchen and making the family’s lunch for the next day. I found that things like this is where my time wasting went. So I took a stand against my family and as my son puts it, went on a (permanent) strike.  This has proven to be the biggest sanity saver by far.

My day started filling up very quickly and I’m happy to say that I now have at least a few hours to a day spare at the end of the week. I get to choose if this day will be filled with lazing around, watching a movie or just browsing around the mall. It really doesn’t matter what I do on this day because it’s not predefined.

The beauty of the time I now have spare is, I get to choose who to devote that time to for that moment. Either way, someone (be it myself, my family or my friends) benefits.

I gave this challenge a few months before I decided to write about it. I wanted to test a few things…

  1. Would this be a momentary thing like a diet that starts out with every good intention and falls face first, failing miserably? or
  2. Would life get in the way? or
  3. Would I just revert back to my old ways therefore blowing said theory out the water? or
  4. Along the way, I questioned whether or not I would burn myself out and decide that it just wasn’t worth the effort? I suppose this is a big possibility because I was literally using up all my “free” time in a day.

I soon realized that I needed to have a cutoff time for when I would stop working or doing anything. I needed to still feel human at the end of the day. So, I decided that by 7:30…8pm for the latest, I would literally down tools. I normally end up going to bed between 9 and 10 at night. (If it were up to me, I would be in bed by 8).  I guess I can’t have it all.

The way I see it, before, I didn’t really have enough time to devote to my family. In fact, in time, I loathed the fact that I had to do “stuff” for them. This is not the way I “think” it should be when doing anything for someone you profess to love. However, I also believe that it most definitely works both ways. If my family professes to love me, then surely my happiness should matter just as much to them.

I can now finally think about doing things I love to do…I just need to figure out exactly what that is. Honestly though, making the move towards this feels very foreign to me, hence I haven’t successfully transitioned to that stage yet. But, I most definitely will…

I can see the benefits of the changes I’ve made, especially for my family. I feel better…I don’t have as many emotional outbursts, I don’t fight with the kids about trivial things in the morning. In fact, if I feel like I’m going to, I take a walk downstairs to my room and just take a few minutes to myself. I leave the time management in the morning up to my children. It’s a skill right?

The time I’ve “gained” is well spent doing what I love by either blogging or at the moment it’s devoted to starting a new book project.

In the process, I am finding time to get to know myself a little better. I’m loving the changes and wouldn’t give it up for anyone in the world.
If you are having trouble finding time you “think” you don’t have, why not give this a try?

You have nothing to lose and only time to gain…

Thank you for taking the time to read.

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When mum goes on “Strike”

Mum

This week, I decided I’d had enough. My family life has become draining. So draining in fact, that I no longer found joy in any part of it…my kids, husband, marriage or me. I started feeling very resentful a very long time ago and truth be told, I was just about ready to call it all quits. It’s easy to say you are going to walk out on your family when you feel this way. It was easy enough for me to even envision what my life would be like without them and, even though I anticipated a bit of a struggle or pain associated with such a decision, I could actually see a “better life” for myself.

Needless to say, it’s not so easy to actually follow through. It was great visualizing the lifestyle I so desperately want for myself. A life where I had time to take care of myself whether it be pampering myself or just plain doing nothing, because I can. A life where I don’t have so much responsibility or feel like I’m drowning under the chores that go with taking care of a family of 5.

My days have always felt hectic with no time to spare. It was seriously getting to the point where I felt like I wanted to run away from everyone, including myself.

I’d wake up in the morning, make lunch for everyone after making coffee/tea and at times porridge for the kids. My daughter gave me the biggest uphill battle because depending on the mood she woke up in, it would either be smooth sailing or a “morningmare” (nightmare in the morning).   It was no fun way to start my day, on any given day…and it just felt unfair

At night, when I came home from work, if my husband hadn’t started supper for whatever reason, I would kick into chef mode and without sitting down once, start cooking. Cleaning the kitchen afterward and giving my daughter a bath…by then it would be nearly 9pm. Putting her to bed is not a pleasant experience either because it normally ends in a fight. I would have to lay down next to her as she doesn’t understand “Why does dad get to sleep next to you and I don’t?“. (Oh joy!). She’d wake up during the night, most nights, and either sleep in our bed or I’d have to get into bed with her. Struggling to fall asleep again, I normally end up feeling like a zombie at work the next day.

At the end of it all, I am the one who feels like I’ve been running a marathon for the last 16+ years. And honestly, that would be great if I had the body to show for it, but I sure don’t.

Anyway, this week after losing it with all of them, I had to make a decision on how I was going to handle the situation going forward. It was only after visiting a friend of mine for coffee on Sunday, that she shared a little helpful info with me. She has a system to get her daughter sorted in the morning. 5 pictures sit on the fridge of her little girl doing “chores“.

Brushing teeth, making her bed, packing her lunch, dressing herself and bathing herself. After doing these for the day, she gets a tick on the board in the kitchen. Once she reaches 10 ticks, she gets a treat. For any bad behavior, she loses a tick. I pondered on this for a while and decided, I had nothing to lose and would give it a go.  I have to admit, I couldn’t imagine my daughter doing all of those things by herself…

The system was implemented and all it took was me saying that her little friend does xxx all on her own. She fell for it and soon took over giving herself ticks and looking forward to her treat.

Then it was time to deal with the rest of my household. After eating one night, I thanked my little girl for the good job she had been doing this far on the new system. I thought it best to start with the youngest person on a positive note, to help soften the blow to come.

Next, I turned to my boys (14 and 12), and said “You boys are old enough to sort yourselves out in the morning. Starting tomorrow, everyone makes their own drinks, breakfast and lunch“. My eldest was the first (and only one) to question my decision and protest. (This was to be expected, so I took it with a pinch of salt). He felt I was being unfair and didn’t have enough time to do what he needed to in the morning. I refused to budge or give in, I needed this and my body needed it. The following evening, he said that my “strike” (so funny) was making him do more and he doesn’t “have enough time in the morning” (this from the child who sleeps till 7:30/7:45…yeah right!).

It’s been a few days now since the new rules were put in place and I have to admit, it’s working out well for me. I feel more relaxed and aside from the sleeping routine with my daughter, everyone is pulling their weight in the morning. I have no idea why I didn’t do this sooner…no, actually I do.

I sat and thought about it for a while when I was visiting my friend. My grandmother raised me and I remember her always being in the kitchen. In the morning, she would be up early making porridge, coffee/tea and lunch for everyone. That sounds all too familiar… When we came home from school, we would have a cup of tea and sandwich waiting for us. So after this memory, I was convinced I was heading down the same track and purely repeating what I had seen as a child.

How easy it is for us to repeat the “mistakes“, no matter how good our intentions, of our role-models. Are we really teaching our children the valuable lessons they need to be self sufficient one day? I’ll be the first to admit that there are some simple things I’ve been taking away from my kids by all that I do for them. It’s not tough love, it’s grooming them for their independence and saving my sanity in the process. Besides, at the start of my post, I said:

I no longer found joy in any part of it…my kids, husband, marriage or me. I started feeling very resentful a very long time ago and truth be told, I was just about ready to call it all quits“.

I have no one else to blame for the state of things…yes, they all contributed negatively at some point as well but, there is no excuse for feeling this way. I reckon the visit to my friend was a blessing. I thank God that I can now return to feeling good about my family and my life. There is value in making these kind of changes…I’m sure one day my kids will thank me (even my eldest son who doesn’t understand the wholesome reason behind my “strike”).  If only he understood, strikes have an end…this, is only the beginning of a new way of life for all of us…there is no end.  He’ll realize this soon enough…Lol!

 

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Hydrocephalus: Being strong and independent can be your own worst enemy. No one will give half as much as you do and why should they? #SoWhyShouldYou?

IMG_1112

I’ve been guilty of being too strong and independent for my own good. Because of this, the people (closest to me) in my life don’t give me a chance to ever be weak or needy. Truth be told, I don’t like depending on others for anything. I hate it with a passion, especially if I have to ask them more than once to do something for me. If I do ask, it’s because I truly cannot do it myself and really wouldn’t have if I could otherwise. This is what they don’t get.

I live with Hydrocephalus, diagnosed at the age of 29…I am now 38. I believe that the people who have been in my life prior to my diagnosis, don’t understand when I am not well or need extra support. Sure, I don’t expect them to because I think even if I had to have had this all my life and they knew of its existence, they still wouldn’t fully understand. It’s a case of, if it doesn’t directly affect you, you’ll have a hard time fully understanding. I accept that…to a point.

This is a very unpredictable condition.  Something, which has a mind of its own. There’s no telling when you’ll next feel sick or for how long you will go feeling as good as your body will allow you. I’d love to be able to zap someone, who doesn’t have Hydrocephalus, with just a day of feeling like I do when I have one of my worst episodes…purely to get my point across.

In fact, I find it quite disturbing when my loved ones make fun of the fact that I forget things.  Or, when they say things like “you’re always tired” and see it more of an inconvenience for them. To maintain my own sanity and the little shred of dignity I have left, I fake my feelings and pretend not to be too bothered by it. If I had to be honest though, it’s hurtful. I didn’t ask for this but life dealt me this hand and I’ve had to do the best I can to get through.
The problem I have is that I am quite vocal about my condition and symptoms…so they’ve heard my complaints, they know of my challenges.

As an example of the type of thing I’m talking about in today’s post:

One morning, I stormed out of the house in a fuming rage. I lost it beyond what I have ever done. (Picture a pressure cooker…then you’ll know).

My 5-year old daughter is a real life challenge to me in so many ways so this particular morning was no different to any other. She can be the sweetest little person at times and I love her dearly. However, she is also very headstrong and stubborn (some of which she got from me).
I was trying to get her ready for school so I could drop her off but she wasn’t in a very complying mood. In fact, she gave me uphill from the time I woke her up, which I endured right up to my breaking point. I have made arrangements at work to start later so I could sort her out first in the morning. All the time during her rebellious performance, I was watching the clock and anxiously calculating how much time I had left to get to the train station in time.

Since she wasn’t co-operating, I simply lost it – yelling and screaming and (thankfully), my husband came home (after leaving at the start of said pressure build up) from work saying he’s taking a day’s leave (not sure why).
I stormed out of the house so quickly and felt horrible after calming myself down…bursting into tears. I promptly stopped myself from spilling any more tears because I knew the tell tale signs would be there…(roll on keeping up appearances that all is well with my world).

However, it made me realize that this is utter crap.

Why is life so unfair? 

Is it not enough that I have to live with the effects of this condition and all its daily challenges? 

 Why do I need to lose it for the people around me, my husband and kids especially, to say they’ll help make my load lighter. And, not just as a once off or when their mood strikes. I don’t deserve this…that much I know.

I don’t get enough time to think about or much less feel sick (thankfully I’ve been fine for a while now), I’m too busy taking care of everyone else’s needs. I guess this is the reason why, when I do get sick, I am literally rugby tackled to the ground…and out for a few days.
I’d like to believe I am a good person and yes, I have my faults but when it comes to others, I would like nothing better than to help where I can. I almost feel like the biggest fool for being too good to others. Besides, I now fully believe that being strong and independent has been my own worst enemy.

There’s a saying that goes “Treat others as you wish to be treated“. I don’t believe in this saying and simply because it has never worked for me. People (some) still take advantage of my good nature and abuse my generosity. I just can’t do it anymore…

No one will give half as much as I do and why should they?

So…it leaves me with only one question. Why should I?  With that said though, it doesn’t mean that I’ll start treating others, as I DEFINITELY don’t want to be treated.  That’s me staying true to myself, which is more important to me.


Thank you for taking the time to read

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