I am not a patient patient.

January 21, 2014

At last!  At long flipping last!  I actually feel a little better in the head department.  When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries.  It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive.  Even if you have to force yourself to.  Anyway, yesterday I managed to go for a run…the first run in six months.  Oh, how I’ve missed it.  It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape.  It’s not attractive.  But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster.  My surgeons know I run daily most of the time and have never told me to stop.  So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position.  I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on.  Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate.  So I told Saint Simon, who ordered me to come up the next day and he changed it for me.  And now my bed is only on one brick and I can stand up a lot more easily.  I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it.  But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick.  I’ve even taken on an extra work shift.  Get me.
And now it’s shunt project time!  Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted.  Usually the children born with these sorts of complications are left with no treatment at all.  Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover.  Poor thing; she’s missed the children she usually sees over there so much but her health comes first.  Health always comes first!  Given the change of circumstances Kim has asked if I can deal with the government in Vietnam.  Me.  Little old me.  Oh, God.  I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense.  But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing!  Of course she’ll help me and will be there for support.  And obviously I have Lewis on board now too so I’m not doing this alone.  But it still scares the crap out of me.  I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years).  Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least.  But then I knew my present recovery was going to be slow and drawn-out – and I was right.  But I’m getting there and things are slowly improving.  Pigeon steps forwards.  But steps forwards nonetheless.  I think we can apply that to foreign health ministries, right?

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  • Reply Sooseek August 14, 2014 at 9:47 am

    You are a constant source of comfort to me as you are the only person who seems to struggle with almost constant pain associated with hydrocephalus. One year after surgery I am still disabled by this condition and don’t know where to turn so unfortunately I can offer you no comfort yet but I wanted you to know that your blog has helped me to see I’m not the only one.

    • Reply jordantheheadcase September 16, 2014 at 7:07 pm

      Hi there,
      Ah thanks for the nice words….but I’m sorry you’re having a hard time with it. Sounds to me like joining a good support group would be a good first step to improving things…even if we feel physically crap, it’s so good to know others out there are in the same boat so we’re not alone. Of course, in an ideal world nobody else would have horrible symptoms, but feeling you can’t talk to anyone about how you feel is not a good way to go on….so I think finding lots of people who feel the same way you do but who might have tips and suggestions and – well, just support – might help. I’ve joined a few over the years and they’ve been great. Have a look online (Facebook has some good ones) and see if it helps you feel a little better. It can take a few years (unfortunately) to get back to ‘normal’ following a surgery or similar. I’m still not quite right following my surgery last October, when I got very ill following an ICP bolt removal….so almost a year and still trying to get back on track! Hang in there and talk to your surgeon if you feel really bad…you may need another course of action or a pressure tweak! Good luck. Jordan x

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