Have You Tried Switching 2020 Off And Back On Again?

March 21, 2020
No, I did not stockpile. That is honestly all I have.

No, I did not stockpile. That is honestly all I have.

Yo. Long time no write.  I hope you’re all as well as can be and holding up okay under what has been the most surreal start to a year.  Brendan, Ciara, Dennis, The One-We-Unofficially-Named-Emily and Jorge have all gatecrashed our UK weather party and frankly overstayed their welcome. It’s a bit strange to have a weekend without a named storm, to be honest. We’ve waved goodbye to the EU (no I’ll never be okay with that and I still can’t believe it) and now Coronavirus is weaving its way through the world, triggering mind-boggling behaviour with people buying so much loo roll that you really have to wonder what the heck people are eating if they feel that 36 toilet rolls should be sufficient for a few weeks potential quarantine.  All this and it’s not even the end of March yet.

Talk about timing…

Clearly my shunt has been feeling in need of the limelight too, so has decided, after nine years of near-perfect behaviour, to retire. At the best of times, this would be a drag. Expected eventually, yes, but still a bit of a drag. But to have it coincide with the single biggest health threat to the entire planet in decades is, to put it mildly, slightly inconvenient timing.  Our beloved NHS has been struggling with bed and staff shortages from ten years of austerity cuts and now it has the seismic task of accommodating potentially thousands more seriously ill people.  I am certainly not alone in my situation; I have joined the thousands-and-thousands-long queue of those whose operations have been cancelled and who are simply going to have to manage difficult symptoms as best they can until – well, who knows until when?  However, my concerns now lie with the whole world staying the heck away from this virus. My close friend has been officially diagnosed and falls into the ‘high-risk’ category, having recently had a liver transplant. So what does he do?  Skips off to Switzerland for a skiing holiday, falls over, breaks a rib and then contracts Coronavirus along with seven others out of his party of ten. Yeah…probably didn’t want to do that, bruh.

 

He called me last night after days of texting (he couldn’t speak for days) and it looks as though he’ll pull through without having to go into hospital. I cannot tell you how relieved I was to hear his voice. He said it was ‘really something you don’t want to go and get’. This from a man who was ill enough to warrant and go through a liver transplant.  Noted.

So we high-risk or no, bro?

 So – fellow shuntees and hydrocephalus people – you’ve probably also been wondering if being shuntees and hydrocephalus people places you at a higher risk of serious illness if you contract Coronavirus. And like me, you’ve probably been Googling for answers and coming up with – nothing, really. Underlying conditions are more risky.  We have an underlying condition.  But it’s not specifically listed. Therefore is it risky? And round and round we go.

To get some clarification, I contacted three members of the neurosurgery department at the National Hospital in London (one of them my own neurosurgeon). They all got back to me within three hours of each other. Honestly, you wait nine years before having to consult your neurosurgeons with problems again and then three call you up at once.

Here is what they all said.  Of course, none of this is definite.  It’s just likely, based on their wealth of experience and what they know of the virus so far – straight from the horse’s neurosurgeon’s mouth:

  • The shunt itself is highly unlikely to be affected by the virus.  
  • There is nothing about having a shunt which is likely to make a person more likely to catch the virus or be seriously ill if they did. Any serious complication would be likely to come from other underlying health issues, such as diabetes, heart disease or a lung condition which increases the possibility of pneumonia developing.
  • Getting coronavirus is likely to make hydrocephalus symptoms worse (headache, tiredness) but those symptoms are unlikely to be dangerous. It still seems to be pneumonia causing lung complications which lead to serious cases.

Do read this article from the Hydrocephalus Association too: COVID-19 Information. It’s a good and reliable summary of information and advice.

Personally, I’m playing this situation on how I usually respond to getting a heavy cold or ‘flu;  I’ve ended up in hospital twice from heavy colds gunking up the CSF and causing the shunt valve to pack up. Plus my head pressures get SO bad when I’m ill that I can imagine it’ll be the same if I get this virus. So I’m staying the heck away from people and in doing so, hopefully the heck away from a much-needed hospital bed. I recommend that if any of you are concerned, you contact your neurosurgeon. They are super-busy right now but they’ll get back to you. Mine reassured me with ‘we’re still here, Jordan. We can’t help you as soon as we’d like if you’re not a serious case but we will as soon as we can and we will if your condition becomes serious’. You can’t ask for more than that. This is why I love the team I have so much.

Ah, floor…how I’ve missed you.

So for the next 6 months or so, I’ll be lying flat a lot (seems I’m overdraining). At work, my colleagues were getting used to walking in on me a couple of times a day, lying flat on the floor like a sardine, doing emails.

I’ll be down here if you need me.

Lying flat literally fills my head back up and then I’m okay for another couple of hours. It’s been nine years since I last had to do all this so although I’m a little out of practice, it’s all coming screaming back to me!  Caffeine also really helps low-pressure symptoms so after the same nine years of not touching the stuff, I’m now having to drink about five cups of caffeinated coffee a day. To say I’m having the shakes a bit as my body gets used to it would be an understatement. Sorry, bod. You’re just going to have to keep up as best you can.

 

I know these are worrying times. Everyone has their own story. Every person has their own concerns about their loved ones, their job, their own health. We just have to muddle through this and look out for each other along the way. Today my brother, his girlfriend and I started a home shopping/delivery service for the elderly and vulnerable in our local area. I’m dropping the leaflets and taking the orders, my bro and Maxine are doing the shopping, I’m dropping it off to the villagers.  All done with gloves, antibac gel, lots of distance and (where possible) washing of bought items before we deliver them. That may seem a little excessive but we’re not taking any chances.  The couple we delivered to today had been panicking about what to do so check in (if you’re able to) with your neighbours. Alleviating worry can be so easy to do and mean so much.

Stay in touch, y’all.  I have everything crossed that you and your loved ones will all be okay.  And if it all gets a bit much, have a lie on your carpet, switch on yer Skype and let’s have a floor party.

 

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2 Comments

  • Reply Kat March 27, 2020 at 7:54 am

    Thank you, Jordan, for all your kind words, funny stories and informative life tips.
    “ I’ll be down here if you need me”, has also worked very well for me. Nice to hear that I’m not crazy when I tell my family that this IS what my body needs .
    Stay safe and healthy,
    Cheers, Kat.

    • Reply admin March 28, 2020 at 9:59 am

      Hi Kat! Thanks for your kind words; I hope you’re staying safe and well during these strange times. Yes, I’m sure that some of the remedies for our symptoms can seem very strange to others! As long as they work for us though, that’s the key thing. Stay well! Jordan x

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