Being strong and independent can be your own worst enemy

Being strong and independent can be your own worst enemy

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.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

No Comments

  • minionmayhem514

    November 21, 2015 at 1:00 am Reply

    We don’t have these hydro issues with my daughter yet because she’s so young, but we do get comments about her prematurity that are similar in origin. “She’ll be fine.” “She’s so small.” “Why don’t you take her out?”

    If people aren’t living it, they don’t understand it.

    Dumb question. Can you feel your hydrocephalus? I wonder what my daughter experiences with it and you are the only person I “know” who has it.

    • skyewaters

      November 21, 2015 at 2:57 am Reply

      I’m struggling a bit with my response to your comment but more your question. (Not dumb) It’s a tough one for me to answer, so I’ll try.
      What I do feel are the symptoms of the condition. The *headaches*, nausea and/or vomiting and irritability/moodiness that hits me – I suppose this is when my pressure builds up. Not knowing how bad it’s going to be or if something is wrong is just as bad. Like waiting for a tsunami to hit, it might/it might not…but you know if it does, it won’t be pretty. Noise irritates me, I need a dark room and am truly grateful when I can just fall asleep, which doesn’t come all that easy when you feel like this.
      The *headache* is the worst for me because it literally feels as if my brain is being squeezed out of my head. I can’t sit, stand or lie down because it gets that bad…I don’t know what to do with myself.
      I don’t want anyone around me and yet I do because I silently pray that they can make it better or more importantly stop me feeling this bad. My husband would be ideal in this scenario because just having him hold me, would help because I crave TLC. However for him, I know it’s not easy because he doesn’t know what to do for me and quite possibly feels helpless at this point.

      Thanks for your comment and good luck with your daughter. Feel free to ask as your questions enter your mind. I don’t promise to have the answers but I do promise to be honest with you.

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