Living with hydrocephalus: Hydrocephalus + Job = Difficult

April 9, 2013

It’s a Bad Head Day.  Most people have Bad Hair Days.  Well, I have those too…notably for about six months following a surgery when the surgical team have shaved off half my hair.  But Bad Head Days are more frequent.  Today’s has been caused by the weather.  My head does not like changes from high barometric pressure to low barometric pressure.  Not only do I feel pretty rough, but I had my boss call me up this morning (I work from home – the only way I’ve been able to hold down a job for any length of time) to let me know that last night, during my work shift, I made four errors.  This is odd for me.  I’m usually uber-careful and double-check everything before I send it off as I am fully aware that a shunted brain doesn’t always produce perfect work.  I double-checked my stuff last night too but seems that it didn’t make an awful lot of difference.

My Sofa: My Friend (on days like these).  Hoshi the cat (curled up on the right) is also My Friend.

My Sofa: My Friend (on days like these). Hoshi the cat (curled up on the right) is also My Friend.

Today I am mainly on the sofa with a throbbing head and feeling glad that I don’t have to go anywhere/talk to anyone (apart from the cat) today.  Well, until I start work tonight.  Holding down a job with this condition is damn hard.  We look fine, we seem fine – and out of nowhere, we can go a bit strange, with no warning.  Working for myself and from home has been a Godsend for me.  It’s literally the only way I’ve managed to always work, throughout the whole thirteen years since my diagnosis, during the periods when I’m not very ill or having surgeries.  I was employed in the years leading up to being diagnosed and for four months afterwards in a high-pressured, high-energy job which I loved.  I loved the buzz, the stress and pressure even and the salary!  It only took three weeks after being back in the office after an absence of seven months (the amount of time it took me to deteriorate, be admitted to hospital, be kept in, have the barrage of tests that ensued, have the major surgery and recover sufficiently) to realise that keeping that job was no longer an option.  I was brokenhearted.  My company were too and very generous and supportive but it was a no-brainer (pun very much intended).
I will post about how I made the transition from Sales Administrator to Vocal Coach another time – it’s a story of determination, thinking outside-the-box, perseverance – nah, not really.  It’s a story of complete panic and desperation.  But the former sounds better.  Right, my brain is positively staging a sit-in protest now (or rather, a sit-on protest; it’s refusing to allow me to move from the sofa) so I’ll post when I’m feeling better.  Which will be tomorrow.  That’s an order, brain.

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  • Reply Tracy July 16, 2013 at 9:20 pm

    Thank you, thank you for this blog, your courage and sense of humor!
    I am a part time caregiver for a person with hydrocephalus, who just got out of surgery for blocked shunt. It is an education, a glimpse into a whole new world of which I am a part of now. Take care, those cupcakes look delectable!

    • Reply jordantheheadcase July 21, 2013 at 6:55 pm

      Thanks for your kind words and for reading Tracy! To say dealing with/living with hydrocephalus is an education is an understatement! Every chronic condition must be hard but I find that the danger, the limited time to get help before things get life-threatening and the symptoms varying hour to hour make hydrocephalus particularly challenging. But hey, challenges are here to make us stronger! That’s what I tell myself and then I allow myself a ‘reward’ for being stronger by eating cupcakes. Ha! 🙂 xx

  • Reply Kevin April 29, 2016 at 4:10 am

    I know this thread is a bit old. But, I just wanted to put this out there. I’ve had my VP shunt for a little over 2 years. I have my good days and bad days. My good days are great. My semi bad days are like…… You ever go to a concert and one of the instrument’s timing is off by half a beat? To me, it’s like that in my head. I’m off. I don’t catch things as quickly. I have to concentrate for some of the simpliest tasks. I get tired easier, probably due to the over concentration. I have a difficult time remembering small things. I can’t stay on the simplest schedule.
    On my bad day, tack on confusion, mild nausea, disorientation. I can also be overly emotional (brain gets stuck on depressing or angering issues). Empathy can go on overdrive. Headaches, but not really headaches, like someone is pushing out on my skull. That’s probably pressure.
    On really bad days, I’m useless. I can barely get out of bed. I can remember what I’ve done from one minute to the next. I’m confused about the simplest things. My energy feels completely drained even after resting. My balance is off, almost like being drunk. I have panic attacks, especialy when around a lot of people or noise.
    But, since getting the shunt, the really bad days are few and far between.

  • Reply Jonny May 16, 2019 at 7:33 pm

    I am a person living with Hydrocephalus. My partner keeps telling me that I need to find a job. In the last 2 months, I’ve had 2 surgeries. It’s been 2 weeks since my last operation and she feels annoyed because I haven’t been applying. My mother suggested disability. I just wanna be able to provide for my partner. I feel completely useless. Can someone help? Can I get any type of job?

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