Hydrocephalus : How does a mother “take it easy”?

Hydrocephalus : How does a mother “take it easy”?

I’m a mother of 3, living with Hydrocephalus for the last 12 years, since diagnosis. For the most part, I’ve had a “good run” with the effects of the condition (well, as good as it gets, I suppose). Funny thing is, life didn’t exactly give way when it decided to thrust an incurable condition my way (No real surprises there…). But, I’m not complaining or “crying woe is me” for having it either, I accept it.

Last week, I woke up with a headache, which lasted 2 days. This is nothing in comparison to most with this condition but, a change for me nonetheless (having only had the odd headache here and there over the last while, alleviated by pain meds). Nothing I tried helped, it simply wouldn’t go away. The rhythmic beating and pulsating pain, at the top of my head, ran down my old shunt track. It almost felt phantom-like, as I pictured this old path closed for business, just over 9 years ago when said shunt, was removed. Weird…

It was just a reminder that no matter how strong I think I am, I’m at the mercy of whatever pulls the strings inside my head (literally).  

While chatting to my cousin via WhatsApp, I told him I had a headache and wasn’t feeling all that well.  (One of the only people I can be 100% vulnerable with in my life, without fear).  He told me to “take it easy” and immediately followed it up with the question at the top of today’s post.  Rhetorical no doubt…

It made me smile…

I am so many things to so many people and, in the chaos of it all, there’s me. A vision I sometimes don’t recognise, staring back at me in the mirror. A body, which aches during the night or wakes up with no energy to face the day that lay ahead. A body, which rejoices when I finally lay it down after a very long day. A body, which I’ve pushed to get through work, family, bills, being a wife, being a mother, responsibilities…life and ailments. Fling on top of all that, the day-to-day stresses all these things render individually. Something, which just about every other person faces in their life – I’m no different, nor unique, in this regard.

I just desperately wish I could take a break from it all.

I think the sloganI’ll sleep when I’m deadwould fit in nicely above my head. Funny thing about my brain…It…NEVER…Shuts…Up!!!

When I got the results of my Cervical spine MRI, I asked the GP physician what I could do to “fix” the problem I have with my C5/C6 degeneration.  He said: “Nothing…it’s part of ageing”.  I struggle with this, especially since I don’t regard myself to be That old.  (This being said, Hydrocephalus is predominantly a condition you are either diagnosed with at birth or, as a senior adult. A misconception since anyone can be diagnosed at any age). I cannot accept that this constant feeling of pain in my spine and tingling/numbness down my right side is “normal”.  What does it mean?  Being true to myself, I’ve analysed and over analysed the crap out of it!  Oh the possibilities…

But, I digress.  

A mother doesn’t rest. And, a mother who constantly has some or other medical condition, aside from an incurable one like Hydrocephalus, most certainly doesn’t. In fact, Hydrocephalus isn’t the only contender for front stage right now, talk of Thyroid Cancer and surgery, has thankfully been ruled out – leaving a question mark hanging above my head. What else is new…

Hah! Take a number Hydro!

More so, a mother still needs to stay as sane as possible when doctors struggle to determine the causes of her symptoms, there’s just too many to deal with and she gets it, she gets that she’s medically complicated.

When the suggestion to use Anti-depressants rears it’s ugly head again by a well-meaning specialist to treat something else, it evokes a reaction, which scares the crap out of her (because these pills make her depressed and severely suicidal). Making her feel like “surely there must be “something” wrong with me…I must be losing my shit!”. The irony here, it doesn’t matter if this medication will help or ease her pain. It’s the thought of what the effects thereof, could do to her family. Can anyone really blame her for feeling like death would somehow be kinder than this life she’s living? (Please note: That’s said not in a depressive kind of way but more a defeated kind of way – Like IDGAF anymore kinda way…I think you get the picture).

Some peoples’ marriages have crumbled and fallen prey to defeat at the hands of this evil villain, through no real fault of their own – a fight they may have been doomed to fail anyway.  Succumbing to a pressure, literally different to the one in their head but, forceful enough to cause damage. When complaining about how “sick” you’re feeling, how tired you are, made to feel bad because you’re so unsociable, accused of faking it or seeking medical help (more often than not), sparks unpleasant comments, criticism or arguments from, and with, those closest to you – it deflates you. I myself have been on the frontline of this a few times but, somehow, I survive with the cracked walls around me.

The irony of this little f’d up nugget of “joy” is, you seek help because you want to get better, you rest because you want to be able to give your all, you ride a wave of feeling deathly ill in hope of rising above it all – just so your family can benefit.  And, sometimes you do so at your own peril. 

A brain injury isn’t a part-time ailment as fellow blogger Michelle Munt, wrote in this post.

This condition, the surgeries we endure because of it, puts us all in the same position. Michelle references the spoon theory, by Christine Miserandino, and how we need to use our spoons sparingly. I certainly find myself doing that most of the time, unbeknownst to those around me.

I got through day 3 after my headache episode, without any sign of pain, just a tired body recovering as best it can. I was thankful for the fact that I could lay my body down at night, despite what the middle of the night or morning brings. Any rest, in-between pain, a bonus and one I accepted with gratitude.

So, I guess as much as I could answer the question by saying, a mother never rests, I’d have to say: I’ve learnt how to use my full 24-piece cutlery set. Even though I make a special attempt to keep these as far away as possible, it best to just step aside once the knives and forks start flying, compliments of the foul mood that takes a hold of me.  A side effect of the condition, when the “Kraken” is unleashed – I kid you not!

But…and this is a Big sized BUT…

For me personally, my pain or any discomfort, takes a backseat when my family need me for anything, or the house needs cleaning, or I have a deadline to deliver at work. If I feel unwell and Hydro kicks my butt for a few days, I take the abuse and get back up…battered and bruised. I struggle sometimes to remember that this condition doesn’t come with an instruction manual. It doesn’t ask permission to throw a tantrum and it sure as hell isn’t a part-time gig…it’s a life-long commitment. That is, a commitment it made to me the day it chose to make itself known to me and the rest of the world. I didn’t have a choice in whether or not I would let it stay or find a quick fix to sleep it off or chuck some drugs at it. No baby…this one’s in it for the long haul.

Nothing says, “Till death do us part”, like an incurable condition! 

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!

8 Comments

  • David

    May 13, 2019 at 2:34 am Reply

    As far as the Hydrocephalus, I don’t have it but my 29 year old son does along with Severe Chiari malformation, and Spina bifida. He has 2 VP shunts and has had several revisions over the years, He also has a Titanium plate in the back of his skull due to the Chiari malformation, he has had several decompressions surgeries and a spinal detethering. He has headaches when the barometric pressure changes.

    • Skyewaters

      May 13, 2019 at 2:41 am Reply

      I’m sorry to hear that, I can’t imagine that it’s easy for him.
      Sadly, many people seem to be affected by the change in barometric pressure. I will keep him in my prayers 🙏🏼💙

  • David

    May 13, 2019 at 2:20 am Reply

    Might I give a little advice about your primary care physicians answer to your question about your C5 C6 spine problem, I would suggest you look foe a more compassionate PCP. I was injured in a vehicle Accident and blew out the disc between C4 and between C5 and C6 I suffered greatly with Pain from my left hip down to my heel, and down my neck to my right wrist for many years even while taking Oxycodone and Methadone for the pain, with the same advise you got. It got unbearable and I went searching and found a great Pain management Dr and after some shots he recommended I might be a good candidate for a High Frequency Nuero-stimulator implant. I agreed to the procedure and had the implant implanted almost 2 years ago and all the pain that was caused by my spine problems is gone I am now off all the pain meds. Please at least research this and don’t listen to PCP’s who tell you there’s nothing that can be done.

    • Skyewaters

      May 13, 2019 at 2:38 am Reply

      Thank you David.
      I will look into it and see how I go.
      Thanks for your comment, it’s good to hear something positive 💙

  • Christine Cormack

    May 11, 2019 at 10:25 am Reply

    Thinking of you and all other hydro warriors. One of the (many) problems with hydro is that it’s not a VISIBLE disability. Makes it that much harder for people to understand. If we all had only one leg, people might be more accepting….who knows? I’m sure you’re doing a wonderful job of mothering, housekeeping, being a wife and lover, and working too! We can only do what we can, within the constraints of hydro. More power to us all! Christine

    • Skyewaters

      May 11, 2019 at 12:13 pm Reply

      It certainly would make life a bit easier if it were visible.
      Thank you for your kind words Christine. 💙

  • Don Clough

    May 11, 2019 at 10:11 am Reply

    I can relate to this so well. I’m Hydro warrior, husband, and partial caregiver to my wife, who has Cerebral Palsy. After my Hydro reasserted itself 6 years ago, it caused a big change in the operation of our marriage, because, before that,I could do almost everything asked of me in my 3 roles of husband, caregiver and housekeeper. We do have help, but I don’t think I’m understood at times. I feel like I’m just supposed to ignore how I feel, and push through by people who have physical ( ’cause hydro is that too!) issues of their own. Sometimes, I feel like ‘throwing in the towel ‘, but if I do that, Hydro wins that battle.I’m not ready to let that happen yet.

    • Skyewaters

      May 11, 2019 at 12:11 pm Reply

      Exactly Don! I hear you loud and clear…
      Thanks for your comment 💙

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