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life

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.

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

April 9, 2017
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?

Ask-Me-Anything February!

January 28, 2015
Er…how can it ALREADY be February?!

It’s really quite scary.  I am still clawing on to Christmas.  I know, I know…when it comes to Christmas, I am officially sad.  I still have chocolate tree decorations saved and a couple of Christmas crackers and my 3D animated Christmas screensaver on my laptop and you know what?  I DON’T CARE!!  All my friends and family know how border-line obsessive I get over the festive period (in an understated way though; I don’t have flashing neon reindeer on my roof or anything like that) and by now accept that it’s just me.  DEAL WITH IT.  And no, I’m not sat here typing this whilst wearing my magic transform-every-fairy-light-into-an-image-of-a-reindeer glasses (she lied).

They are, however, REALLY, REALLY MAGIC.

They are, however, REALLY, REALLY MAGIC.

Over Christmas and New Year I received lots of emails from readers of this blog asking all sorts of questions.  I have tried to answer as many as possible but I know I’m behind so I thought that for February I’d put a shout-out to readers old, new and curious to ask me anything you like and I’ll answer all and sundry at the end of this month. question mark You can ask whatever you blooming well like, shunt-related or not.  I have a few as yet unanswered emails which I’m thinking of including in this end-of-the-month post as they’re rather interesting (fear not, your anonymity will be one hundred percent guaranteed; I’d never publish your names on one of my posts without your prior permission).  So if you’ve been reading this blog and wondered ‘does she ever actually go out?’, ‘does she ever just want to rip her shunt into bits, the way I do sometimes’, or whatever else springs to mind, feel free to now go ahead and ask.  And I’ll (hopefully) answer ’em all.  If any questions overlap, I may need to pick one from that topic and answer that, but all topics will be addressed.  So you lot get thinking and I’ll get back to….trying to get over Christmas.

I told you I wasn't wearing them.

I told you I wasn’t wearing them.

I’m Forty Next Month. I Have A Par-day To Plan. Help.

September 1, 2013

Er, excuse me, where did the year just go??  I am forty next month and I have not completed my F-List.  This is not on.  To make things worse, my shunt has decided to malfunction.  Great timing, as always, Shunt!  I had planned to go to Paris in September (it’s on my F-List) but now I can’t leave the house, let alone leave the country. 

This is where I wanted to be on my fortieth.  I love it here.

This is where I wanted to be on my fortieth. I love it here.

Maybe I’ll just have to be creative regarding that one. I have decided to start organising my fortieth birthday plans now.  Because October is galloping up behind me at alarming speed and my gut is telling me that I am almost certainly heading for head surgery of some sort.  So best to crack on with it now rather than wait and find myself in hospital, rather poorly and with no energy to organise a wash, let alone a party.  I am now trying to decide what to do to celebrate what has turned out (rather surprisingly) to be an important birthday to me.  Here’s why it’s important:

  • I’m grateful to be able to celebrate a fortieth birthday.  Not that every time my shunt fails I think I’m going to die – I don’t.  But in the last thirteen years I’ve had nineteen troublesome brain and stomach surgeries, two shunt infections, a blockage, collapsed ventricles in the brain, my brain fluid leaking down my neck (it really shouldn’t be on one’s neck) and a couple of genuine moments where I did, momentarily, find myself thinking; ‘hmm, this feels dangerous.  I wonder where this is going to end up?’.  Having genuine uncertainty, even if it’s fleeting, as to whether you’re still going to be alive in a couple of days is rather odd.  Also, probably more obviously, the work I’ve done on my shunt donation project has taught me that I am actually very, very, very lucky indeed.  Life should be celebrated.
  •  I want to throw a nice party to thank my family and friends for helping over the years.  I know what they’d say to that; ‘that’s what we’re here for!’.  Well, yes it kind of is.  But that doesn’t mean I take it for granted.  The only way I can stay positive when I’m very ill is because of them.
  • Last year’s birthday was a washout.  I was so ill, I couldn’t even stay to my own party.  I ended up in bed by 8.30pm.
  • Although people may not see it this way, I’ve had a cracking first 39 years.  I had a wonderful childhood, a pretty normal teenage existence (stroppy, spotty, thought I knew everything but still secretly loved hanging out with my family even though it was criminal to admit that), some very blessed years in my twenties working at Nick’s Music Studios which was the best job I ever could have asked for, and even though the years since then have been challenging, I’ve learnt a lot.  I wouldn’t change a thing so far.  Even the hydrocephalus bit.  I have often said that if I were given the choice of going back to my life at 26, when I was diagnosed, and having the option of either NOT having hydrocephalus but staying in my life as it was at that time, with that boyfriend (we were about to sign a mortgage and probably would have got married), that job (before I worked at Nick’s Studios) and that perfectly-fine-but-unremarkable existence OR having hydrocephalus and ending up where I am now (single, only able to work part-time, feeling physically rubbish much of the time), I would without hesitation choose the latter.  I prefer who I am now.  I’m genuinely happy.  Hydrocephalus and all.

So I feel I have lovely things to celebrate and lovely people to celebrate them with.  But what to do?  It’s hard to plan a big party when you’re feeling so ill you can’t function after 2pm and your memory is like a colander.  I have no idea of what is going to happen be done regarding my head; I know they want to do ICP monitoring but what comes after that is anyone’s guess.  I have pushed my party back to 10th November at the moment..I am hoping that if I do have to have a sizeable surgery, this will allow me to recover enough to attend my party!  Here are the options I am considering:

  • Hiring a boat on the River Thames and having a floating party, with live music from my friends-in-various-bands.  It would be a four-hour cruise past all the major sights and back again.  It would also be pretty expensive.  But fun.
  • Hiring a venue down here (by ‘here’ I mean Brighton as that’s the nearest large city to me and has the most options) with – again – live music and good food.  It’s cheaper and it’s easier to accomplish if by any chance I am ill on the day.  I could still go for a few hours whereas getting to London from here and then partying and then getting back when your head pressure is off is not really that enjoyable.
  • A cocktail party at mine; it’s big enough and I have a 1950s cocktail bar that I bought on Ebay when I moved out here.  The downside of this is that I cannot leave if I feel unwell and it’s a lot of organisation/preparation/clearing up, which isn’t easy when you’re ill.

I had wanted to spend my fortieth in Paris but that is now impossible.  I wondered about having a Paris-themed party instead, with French food, French music and French decor.  I need some suggestions if anyone has any.  Please feel free to list them below!  My aching head would be grateful for them.  xx