Hydrocephalus: Gaining Insight from Colleagues


Work…the place we spend majority of our precious time.  Colleagues…the people we spend more time with than our own family.  Just how important do you regard them to be?

In my opinion, we need at least someone who knows that we have this condition at work.  A person/s who has your back in case of an emergency.  Someone who is concerned enough to say “How are you doing?” And, actually wants to know because they care.  Luckily for me, I have a few people who know that I have this condition at work, management included.  I feel blessed to say, I have their support and empathy, which is more than I expected but grateful for nonetheless.

I know what a tricky subject it is to let your employer know that you have Hydrocephalus.  I also know that there are many of us who would rather suffer through a day than let anyone at work know that we are feeling unwell.  (Slowly raising my hand…guilty as charged).

However, I also realized soon enough that having people at work who I can trust with this information could just be what stands between me and an emergency situation some day.  If anything were to happen to me, I want to be able to feel comfortable knowing that someone will react from a Hydro point of view.

The following colleagues, past and present, have generously supplied me with some responses to the questionnaire I sent.  I accept it with an open mind and am grateful for their input.

To put it into perspective for you, my dear reader, my current colleague was not part of my Hydro journey from the start and is therefore limited in his responses from that point of view.  His responses almost fills in the gap for the last 4+ years since leaving my home country.

My past colleague with whom I was very close both at work and outside of work, has been there from the start (since diagnosis) and, can therefore give a better account but has not been a part of my journey for the last 4+ years.  Therefore the two respondents almost meet in the middle without realizing it…tag team if you like.

(I’ve decided not to correct the spelling of the word Hydrocephalus for the purpose of the post).

Current colleague and fellow blogger – Terence Brown

  1. What is your relationship with me?​
    • Colleague, and I’d like to say friend.​
  2. Do you know what condition I have?
    • Hydracephalus
  3. What is your understanding of this condition?
    • Fluid on the brain causes pressure, which is seen as debilitating headaches and possible memory loss? ​
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Not exactly. But I would look for feeling faint, loss of hand eye coordination, and massive migraine​ 
  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?
    • 2
  6. What was your initial reaction when you found out I have this condition?
    • I was intrigued and wanted to find out more.​ 
  7. How did you feel when you heard I needed surgery?
    • Concerned
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • N/A
  9. Have you noticed any significant changes in my performance?
    • N/A​ 
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not too sure​ 
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • N/A​ 
  12. What frustrates you most about me having this condition?
    • Not fully understanding as I don’t know what it feels like.​ 
  13. Do you have any questions for me?
    • Not at this time, but don’t worry, I’m not afraid to ask. :)​ 
  14. If you could say one thing to me, what would it be?
    • You display massive strength and enthusiasm even though you are faced with this everyday.​

What have I gained from this feedback?

Well, for starters, it was good to hear that Terence was “intrigued“.  This makes me think that maybe there are people out there who want to know more about Hydrocephalus, people who have never heard of this condition.  That maybe talking about my condition is probably not such a bad thing after all.  It doesn’t matter that his intrigue is possibly borne out of curiosity…What matters is that the condition is given the spotlight it deserves because this condition is not something to be ashamed of.  It’s not self-inflicted and is not caused through anyone’s actions.

Many people I’ve been in contact with, have displayed an interest in or commented on not “knowing what it feels like“.  I’ll have to think about the best way to describe this and that in itself might just be a future blog post.

The last statement made, “You display massive strength and enthusiasm even though you are faced with this everyday.​“.  All I have to say to this is:

Do I really have a choice?  I accepted the condition a long time ago as it defines who I am now.  I don’t know how to face situations without being strong (that in itself is another story for another day)…mind over matter most days.  My grandfather always used to say this and I finally get it.  In all honesty though, I do forget about the Hydro on the days when I feel good.  However, the days when I don’t, well that’s another story.

Ex-colleague and very good friend – Laureen Grimett

  1. What is your relationship with me?
    • Friend
  2. Do you know what condition I have?
    • YES
  3. What is your understanding of this condition?
    • Water on the brain…causing migraines, mood swings, short temperedness, irritability and tiredness.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Short tempered, easily agitated and distracted.
  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?
    • Seven to 8
  6. What was your initial reaction when you found out I have this condition?
    • Concerned but knew you would be fine with the right treatment.
  7. How did you feel when you heard I needed surgery?
    • Scared
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • No and yes. No you have remained the honest person you are. Yes you’ve become anxious & earnest
  9. Have you noticed any significant changes in my performance?
    • No, or maybe…..you’ve always been driven/determined and always have set out to achieve your goals.
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Death or brain damage
  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?
    • That you may become too intense and focus too much on the condition to the point that it takes over the norm.
  13. Do you have any questions for me?
    • No
  14. If you could say one thing to me, what would it be?
    • Relax, everything’s going to be fine no matter what. Don’t obsess. People are survivors. Have faith, God is good and last but not least…… Focus on your family XXX XXX Miss you…too much.

What have I gained from this feedback?

The thoughts and fears Laureen had, are precisely the same as I had at the time.  There’s always a nagging feeling, despite having faith and trusting that the outcome will be OK, that death might be waiting on the other side.  The feeling of anxiety and fear takes over before any operation I’ve had to the point where my brain is numbed and my body chooses not to react or feel.  It is, obviously, a very unnerving time and one which I for one, cannot say is a pleasant experience.  As for brain damage, that will always be a concern for me too.  A very big one in fact.  I am an independent person and have always relied on myself for everything.  Knowing that this condition or any further brain surgeries could leave me at the point where I am a “burden” to my family or anyone else for that matter…let’s just say, it’s not very well digested by me.

I often wonder if having Hydrocephalus has consumed me.  I’ll be the first to admit it and say YES it has.  It’s not intentional nor will I make excuses for it being the case.  No-one can prepare you for living with a condition such as this.  I know that there are many chronic conditions that people live with on a daily basis, and even though I empathize with them, I can only react to the one I’m living with the way that I do.  I am focused on it on a daily basis and I am obsessed with it…How can I not be?  The reason for this is simple, I am afraid – There I said it.  I am afraid of “what might happen” see When death comes in the morning…  Having Hydrocephalus transcends my faith, it’s above me and brings out the weakness within me.  I am weak in the face of that which I don’t know and yet, it’s the place where I feel strongest.  (If that makes sense to you).

In closing, having a colleague who can empathize and show compassion is sometimes just what I need.  Like Terence who gave me strict instructions to get some rest this weekend after my last post Hydrocephalus : When I just feel like giving up…This is not an easy road to travel, yet having people at key points in your life, makes the journey that much more bearable.  It feels good to know I have colleagues and friends who care…

Check out my next blog in the Hydrocephalus Interview segment.

Thank you for taking the time to read.

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Hydrocephalus: “Are people with Hydrocephalus unsociable”

  
A search term used by someone who stumbled across my blog…

It got me thinking and wondering why someone would type that particular string of words into a Google search.  

A few weeks ago, I had a discussion with a colleague who, after hearing about my book, Hydrocephalus: Floating Faithfully, wanted to meet up with me for a coffee. “Maybe you can help me understand my Dad! He has Hydrocephalus too” was her response. I smiled to myself and agreed to meet with her.

I told her how one of the first signs aside from an escalating headache, was my foul mood. The words I used was “I become a total bitch and then regret it afterward…but I can’t help it. I don’t want to be around people and noise irritates the crap out of me among other things“. She smiled and said “Are you sure it’s just not early signs of menopause?” I had to smile at this.

First of all, I don’t think I’m old enough to be going through that just yet. (Though I’m also not entirely going to disregard the possibility).

Secondly, those words made me feel like I was trying to explain a Hydro headache to someone “who also suffers from really bad headaches” but does not actually have Hydrocephalus. Our “headachesARE different to people who do not have this condition.

She told me how her Dad gets into a foul mood and is just plain miserable at times. All I said was, “it’s a fine line and could quite possibly just be his personality“.

This is what got me thinking more after reading the search string.

Would it be fair to say we are unsociable when we are actually not? When you have a common cold, nose clogged up, head and body aching, feeling drowsy and just bleh! No one expects you to be “sociable” under these circumstances. But, that’s because they can “see” you are unwell.

We’ve all felt this way…so I’m sure you understand what I’m getting at.

I looked at myself over the past couple of days with Christmas and New year. I don’t think I was unsociable but I’m going to assume I probably appeared to be, to those around me. I wasn’t drinking along with everyone else and therefore disadvantaged at that level of joviality. I decided, on my own, to give up alcohol completely because the hangover the next day is just not worth it. It’s a trigger for my Hydro headache and HAD to go.

I sat in the company of those around me, and at times found myself rather retreating to the bedroom to lie down or watch a bit of TV. This was simply because I just wasn’t feeling the spirit of it all. I also nearly slept into the new year but decided to get up and join everyone else as they wished each other at the strike of midnight. I realised a long time ago that I needed my sleep like my body needs to breathe. Lack of sleep is a trigger to my headaches as well so, I make sure I get the required amount of rest.  However, being in the moment with everyone else, was something I definitely don’t regret.  Alcohol does something to your personality, your way of thinking and just plain level of enjoyment. 

Explaining all of this to the people around us is sometimes one of the harder things we need to do…and, even harder is their understanding and acceptance of how it all affects us. I wish I could give each person I come across just a few hours or a day to walk in my shoes when the Hydro clock strikes and my number is up. Then I realise, it’s not about them understanding, accepting or even caring enough to make me feel better about the whole situation. It’s about me doing what is best for myself at any given time because I’m the one who has to live with this condition and am therefore the guardian of my own body. Even if it means I end up “appearing” to be unsociable.

If I had to admit to it, then yes, I have become less sociable. However, I can still share a good joke, I can still laugh and I do find enjoyment in different things in life now. I had my time to drink and be stupidly drunk…I enjoyed it at the time. Then, there came a time and I made a decision too important to mess up. Why do we need to drink to be happy or enjoy ourselves? Why do we need to party till the early hours of the morning? Why can’t the people around us, not just accept the life we’ve HAD to accept and be happy with the time we do spend with them? And, why is it so easy for others to label us “unsociable” when all we’re doing is everything we need to, to feel good for another day?  Especially, since those days are sometimes few and far between.

If I had to answer the person who typed that search string, I would say: 

People with Hydrocephalus are not unsociable, they’re simply surviving life as best they can and, that should be enough.


Thank you for taking the time to read.


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Hydrocephalus: Let’s make a difference to the Hydro world…it might not be a cure but it’s a way to help make a change, at least for the more vulnerable and voiceless

Pier

With all my blog posts on Hydrocephalus, I’ve been contacted by a few people who either have the condition themselves or someone they love has it, more specifically…babies/children.

This got me thinking…We all seem to ask the same questions and go through the same emotions, even though our bodies handle the condition differently at times.  Offers of prayer, support, reassurance and advice on what to do are never far behind when someone posts in a Facebook group.

Until recently, I’ve had a few parents reach out to me asking the same questions and then some.  Unfortunately, I’m an adult diagnosed at age 29 so can’t really give much input to someone who has a baby/child diagnosed with this condition.  However, I am a mother of 3 children and can relate from that point of view.  When I put myself in that parents’ shoes, there are a few things which come to mind.  It’s about Compassion and Empathy and, because of this reason, I decided that I am going to reach out to the groups on Facebook and ask for input into an eBook.

I have not worked out exactly how I am going to do this but I figured, if I could write Hydrocephalus: Floating Faithfully, then surely I can do this too.  Regardless of the fact that I work full-time, have a busy life with home and family and have a few bad days typical of a Hydrocephalus Hangover

This is what I posted today (for anyone who follows this blog but is not a friend of mine on Facebook):

“Hi everyone. I’ve had an idea, which I would like to put together, for all Mum’s and Dad’s of babies/children with Hydrocephalus.

We all know that at diagnosis, it can be a very daunting time and there are so many questions, which come to mind. My aim is to put together (depending on the number of responses I receive) a blog post/eBook of advice from those who have gone through this. A source of knowledge based on personal experiences. What I need from you, since I’m an adult diagnosed at 29 and can’t really answer from this perspective:

  • Any advice you can give to a new parent of either a full term or preemie, newborn (so this will be broken into 2 categories) upon diagnosis.
  • What other (if any) medical conditions was your baby diagnosed with at time of birth and how did you cope with this?
  • What surgical options your child had (at what age) and what worked best for them? When they had their first op, age now and how many they’ve had since also what was the healing process like?
  • Any concerns or strategies you implemented in terms of care from family/friends and how they helped you. This could even include when/if your child started daycare/school and how you prepared others, if necessary.
  • How were teachers prepared and informed of your child’s condition? Did you get support and was your child limited in anyway in terms of physical activity.
  • What challenges have you experienced and how did you manage them?
  • Milestones you looked forward to and how their development has been affected.
  • What telltale signs to look out for and suggestions of what to do?
  • What strategies for communication you put into place with your little one so they could let you know when they weren’t feeling well.
    And, when did you start doing this.
  • Coping mechanisms you found useful. Support groups you joined, etc.
  • What “normal” emotions can be expected on this journey?
  • Any advice, comfort or reassurance you can offer would be great as well.

I’m thinking up to an age where you felt comfortable that your child could effectively communicate when their Hydro needed attention.

This will be a free resource to be shared between everyone and all newcomers to the Hydro family.

What do you think?

If you would like to contribute your knowledge and experiences, please use the guidelines above (feel free to suggest anything helpful I might have missed) and e-mail it through to me on skyewater33@gmail.com

If you are a parent who has just been told your child has Hydrocephalus, and there’s something else you would like to include, let me know too.

Lastly, please re-post, share in other groups you belong to or copy and e-mail to anyone who could contribute.

Thank you for your input…and hopefully making a difference in a little one’s life.”

If you feel in anyway that you can contribute or would like to help, please follow the instructions above and let’s do this!

The success or failure of it all depends on the input I get from others…I cannot do it on my own.  I have challenges with my Hydrocephalus as well, especially My cognitive whirlpool but I am going to give it my best shot.

Let’s make a difference to the Hydro world…it might not be a cure but it’s a way to help make a change, at least for the more vulnerable and voiceless.

I’m super excited to get started!!!  Aren’t you?

 

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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