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COVID-19

Timing Is Everything!

January 13, 2021

My little lockdown companion. She sleeps strangely and I love her.

It’s 1.00pm. It’s Saturday, 9th January 2021. I’m sat on the sofa with Hoshi the cat sprawled half on me and half on her heated throw as she’s still undecided as to which is preferable. I’m watching the news whilst typing this and I think I’ve done this every day for 10 months now. The news changes. Life in its daily form does not. How are you all doing? I hope everyone is as alright as can be and finding a way through all this. I thought I’d get in touch and say ‘hi’, now that I’m well on the road to recovery from my dose of Covid and feel a little more up to writing. My apologies to all of you who have got in touch with comments and questions in the past 10 months. I am working my way through all of them and you’ll see them appearing on here over the next few days if you’ve not yet had yours published. It’s always good to hear from you!
I ended up having ‘long Covid’ – and boy, was it long. Nine months of real unpleasantness. The cough still returns on some days as does the crackling in my right lung, where the blood clots are. But the crushing fatigue and bone pains have pretty much gone although I have to watch what I do. I just feel very lucky to have recovered, especially with the statistics spiralling upwards at the moment.  I’m very glad to know the vaccines are here and being administered (my Dad got his on Sunday and my Mum will get hers early next month). I won’t likely get mine until the Autumn so for now I’m being super-duper careful in my efforts to not get reinfected, which is a total possibility so far down the line after my initial infection.  Like so many other single people, I’m literally at home all the time on my own apart from going out for a run, which I’m trying to do every week now to slowly build my strength and stamina back up. I live alone by choice at the moment so I’m used to my own company, but I’m definitely missing my work colleagues and daily communications with other people. I must say, however – to all parents who are homeschooling their children throughout these lockdowns – I HOPE AFTER THIS ENDS YOU ARE ALL AWARDED MEDALS.
This to me feels like my first ‘proper’ lockdown. I was far too ill during the first one to participate in anything, do any Joe Wicks workouts, watch any Netflix, bake any banana bread or do any Zoom quizzes.

I made these when I was feeling better. Then I gave them all away because I live alone and I have no willpower and no good can come from having a plate of these in your house when you’re in lockdown.

The months passed by in a blur of intense coughing and fatigue, hospital and doctor visits, severe insomnia, countless courses of (useless) antibiotics and regular socially-distanced visits from my brother and his girlfriend who would sit in the front garden to give me some much-needed company and meds. This lockdown, I’m well enough to be bored which is actually a huge relief.  My workplace is closed for the foreseeable future so whilst furloughed, I’m trying like everyone else on Earth to find some routine and purpose for my days. My new activities include;

  • Yoga with Adriene
  • Baking banana bread (and cakes)
  • Regular Zoom sessions
  • Watching Netflix
  • Catching up with work for my charity

Basically, everything that everyone else was doing during the first lockdown. I am so unoriginal. Although I am also teaching myself Salsa on Youtube (minus a partner, the position for which I’m hoping will be filled by a tall, dark, handsome-ish type who makes me laugh so hard I want to wee and who will miraculously find his way to me in the middle of a global pandemic when half the world is in lockdown because in my head that’s completely possible).  I’m quite enjoying Yoga With Adriene; I can touch my toes and everything.

Yep, that’s EXACTLY how I look when I do this position! *
*I’m lying.

Adriene is brilliant and can bend into positions I thought were only possible for paperclips. Doing yoga with a cat in the house is literally impossible, as any fellow cat owner will tell you. For every Downward Dog I do, there will be an Upward Cat, licking my nose and purring.

  The only other eventful thing happening in my life is that my shunt, after nine years of impeccable behaviour, has decided to retire in the middle of a global pandemic when half the world is in lockdown and hospitals are overrun because OF COURSE IT WOULD.  The surgery to replace it was cancelled last Spring, the upcoming appointment to see if a pressure adjustment might see me through for a couple more months has just been cancelled and for now, it’s just a case of trying to manage the symptoms and get myself to a hospital if things reach emergency-levels.  The hospitals are just too busy to see me. I’m having regular telephone and email contact with my surgeon and his team and feel fully supported by them, as always. The only thing I feel bad about in this situation is the predicament of the NHS staff; every single one I’ve spoken to over the last few weeks and months has, without exception, sounded exhausted in a way I’ve never heard before.

These guys – both of whom have operated on me countless times, doing their time in the Covid ICU (on top of their neurosurgical work). Heroes.

I’ve come to know so many of them so well over the years that I also worry about the risks they are taking daily but so far, none of them have contracted it due to the good PPE they are lucky enough to have access to.
So, for now, it’s a strangely familiar but not-too-welcome routine of dealing with overdraining symptoms; drinking litres and litres of fluids – but rarely going to the loo which is really weird – caffeine as late as I can in the daytime to increase the pressure in my brain, lying flat if it gets really bad and waking in the night with headaches that painkillers just don’t seem to be able to stop. Then I’ll get a day where everything seems pretty okay and I’ll get all hopeful that maybe the shunt is actually working fine, only for the day after to be back to the aforementioned routine. That’s slow shunt failure for ya! From previous experience, my shunt rarely packs up suddenly (knocking on SO much wood, here) and simply gets more and more clunky until leaving it in is simply no longer an option. We try to act before this stage as I end up far more ill and having a far longer recovery as a result. But this time, I have a feeling we may end up on the unfavourable side of waiting and if that ends up being the case, it’ll all be fine. It’s life; sometimes it goes the way we want and sometimes the rug gets pulled from under your feet and you’ve just got to find your balance and wobble along for a bit. And the whole world has had to do that this past year. I wish you all well, pray you all get through this Covid-free and as a parting gift for this post, I refer you to the legendary Dolly for words to live by:

She rocks. If you disagree, don’t tell me. It won’t end well.

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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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