I’m Back…So Sorry For The Loooooong Absence!

9 Apr
Yes I am still around…so sorry for the huge gap since my last post!

I hadn’t intended to vanish off the face of the Earth, but life happened. Job changes, a long-running illness and sadly the loss of a close family member in January kept me busy in ways I hadn’t anticipated. Grief is a strange and unwelcome presence, I’m discovering. It’s still early days so things still feel very bumpy but I’ve missed writing the blog and have only just responded to the many, many questions you’ve been asking so it’s definitely time to get back on it!

Yes that is my cocktail bar.  I rarely drink and I have a cocktail bar.  I just love playing hostess!

Still alive…and still kicking!

So in terms of health, my shunt is still behaving itself which is fantastic. The fact that in every other way my life has felt a bit all over the place but my shunt hasn’t really done anything other than keep me going is testament to what an amazing little piece of equipment it actually is. I came down with ‘flu (proper, knocks-you-sideways ‘flu) after forgetting to get my ‘flu vaccination last year. Rapped knuckles for that one…having ‘flu at any time is horrible but with hydrocephalus it is officially ten times worse (I can safely say that having had ‘flu both before and after hydrocephalus!). It ended up turning into a bad chest infection which ended up with x-rays at the hospital but now it’s gone and I’m feeling back to my ‘normal’ self. ‘Normal’ will always be written in inverted commas when applying the term to myself; I don’t think what I feel day to day with hydrocephalus is ‘normal’ in relation to the rest of the population but I’m used to it…so it is normal for me.
One of the very positive things that has happened is that I’ve started rehearsing with my band again.  I have sung in many bands over the years (being a singing teacher and all that) but my favourite band, the country and Americana-based one called Family Nash, split when we just became too busy with our schedules.

Terry Jo rehersal

Terry (guitarist) and Jo (or Banjo Jo as we call her!) at our first rehearsal for years.  We eat apples during our breaks.  We’re not very rock and roll.

 

 I was in and out of hospital an awful lot at the time so couldn’t really be relied upon too much when it came to gigging…which is a not very helpful when you’re the lead singer.  Anyway, Terry, Jo and I decided it had been long enough and gathered at mine the other week to see how many songs we could remember. Quite a lot of them as it turned out!  We chugged out some tunes by the Dixie Chicks, Dolly Parton etc. and had a good catch-up in the process. We aren’t planning to gig soon but just playing and singing the old tunes (and some new ones) is enough for us at the moment.  If I can work out a way to post up a video or tune on here, you can have a listen for yourself!
In terms of the work with the shunts…well that’s been keeping me busy too so I’ll cover everything regarding that in the next post!

Keep sending in your questions and I’ll keep doing my best to answer them.  I’m thinking of starting a forum on here (or elsewhere if it’s not possible to add one to this site) so you can all talk to each other as well as me.  What do you think?

Advertisements

7 Responses to “I’m Back…So Sorry For The Loooooong Absence!”

  1. Alex April 9, 2017 at 5:44 pm #

    Hi Jordan. Welcome back and thanks for the blog, I’ve found it really helpful… I have never posted to a blog before, but there’s a first time for everything. I’m a 51 year old man, diagnosed with iih four years ago. 8 operations on (1 x revision, 2 x icp monitors, 1 x infection, removal & replacement, repositioning of the distal end of the catheter last December and eventually, in Jan this year converted to a va shunt) had stabbing pain where my shunt is and tightness along track of catheter, but last week started with a ‘gurgling’ sound (never happened before), now dizzy and really intense pain in my head, feels like my skull is too small, not constantly, only when I bend or lie down. I was made to feel like a fool by a neuro intern when I believed I had an infection (I was proven right eventually), now have zero confidence. Not like me, but after four years, I don’t remember what ‘me’ is any more. Hate wasting people’s time, just unsure what to do. Any advice from anyone would be gratefully received.

    • jordantheheadcase April 9, 2017 at 10:04 pm #

      Hi Alex,

      Did you see my reply to your post about this? I’ll see if I can find it if not. Jordan x

      • Alex April 10, 2017 at 11:13 am #

        Hi Jordan. Can’t see your response, would you be kind enough to email me? Sorry to be high maintenance! Ta, Alex X

      • jordantheheadcase April 10, 2017 at 7:38 pm #

        Hi Alex,

        I had a look but I couldn’t find how to email you…no email was attached to your name. Here’s what I’d said before:

        ‘Hi Alex,
        Thanks for your post…sorry to hear you’re not feeling great. I think that somewhere along the line we all have our experiences of medical staff who may not be exactly as we’d hoped! But try to not let those episodes shake your confidence too much. Always remember; this is YOUR body and you have a right to ask questions if you feel something is up. It sounds to me as though your pressure is a bit too high as bending over and lying down can increase it further so if it’s generally too high to start with, those movements are probably only going to make things worse. Do you have access to your neurosurgeon? If you can email him/her and express your concerns at least your team will be aware of what’s going on for you. Staying quiet, I’ve found over the years, doesn’t usually help matters!
        Always bear in mind that you are also entitled to a second opinion. I changed my surgeon years ago after not feeling confident with my first two…best move I ever made. You don’t have to stick with team you have right now but I would suggest meeting with them and having a good chat (and hopefully a check-up). Tell them about the experience with the intern; it’s important that they know how this has affected you. Keeping open lines of communication between you and your surgeon is crucial for good treatment. They’re there to support you at the end of the day so should listen to your concerns. And if they absolutely don’t, go to your GP for a referral. Best of luck. Jordan’

      • Alex Warden April 10, 2017 at 9:18 pm #

        Hi Jordan

        Thank you for taking the time to respond, it is very kind of you and really appreciated. I am seeing my neurosurgeon tomorrow. Thanks again for the advice. Hope you are well, Alex

        >

      • jordantheheadcase April 10, 2017 at 10:12 pm #

        You’re welcome, Alex. Good luck for tomorrow! Keep me posted. Jordan

  2. Christine Adams April 9, 2017 at 7:22 pm #

    Good!  You write really well, I want to read it even though I don’t have hydrocephalus.  Just had a really nice day with Elaine and Kim and Elaine had a few tears when I gave her the vase, some photos and copies of the eulogy and prayer.  I also found a recipe in nan’s handwriting entitled Mary’s German Apple Cake so baked it and we had it with tea before they went home.  Speak tomorrow   xxxx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: