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Living with hydrocephalus.

A medical condition where the brain is unable to drain the fluid it produces away naturally. The build-up of fluid inside the brain causes pressure and this leads to serious neurological complications and eventually death if left untreated. Treatment is usually managed by insertion of a shunt (a tube to drain the fluid implanted inside the brain)

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.

4 Comments

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.

 

14 Comments

Chronic Illness & Work; Employment, Benefits & Never Feeling Guilty.

August 24, 2018
Right, I’ll be honest right from the start.  I’ve put off writing this post, even though work and benefits are topics which so many readers ask me about.  The reason I’ve put it off is because my some of my own experiences needing financial support over the years have been pretty negative. That’s not the sort of thing you want to share with people who are often already struggling.  However, my own journey to forge a work path for myself has (although challenging at times) been  a largely positive experience. So that I do want to share.  I’m now on day 3 of trying to write this post, haha! My struggle between wanting to be blatantly honest and wanting to sugar-coat things a little bit to sound more positive is very, very real.  It’s all about balance, folks!

I have included links in red to as many resources as I can.  For readers who are not in the UK, do search out similar resources in your local area.

When you have a chronic illness, you can feel a bit crap (or a lot crap, depending on what you have) for much of the time. Working, whilst providing routine, interpersonal relationships, goals, achievements and most importantly Christmas parties, subsidised canteens and the odd office romance, can be a bit of a challenge on top of dealing with a medical condition. Oh and I nearly forgot. It provides us with money – you know, that thing we generally need to feed ourselves and put a roof over our heads. So yep, it’s kind of important.

Returning to work after an illness or returning with a brand new, shiny chronic condition can be a little daunting but it can also be exciting; it’s a sign of recovery and progression on a journey which may well have been frustrating at worst and downright distressing at best. So embrace this new phase, take a deep breath and see what you want to do and what you can do – you may be about to embark on a new and unexpected road in your life.

So, you’ve got hydrocephalus.  The starting point is; can you work?

And the only way to get the answer to this is to try.  Whatever stage you’re at (just been shunted/living with it a few years/newly diagnosed and no treatment plan yet) will determine your likelihood to be able to work.  Everybody will be different with regard to symptoms.  You HAVE to go at your own speed here. That’s an order.  Jordi has spoken. doasyou'retold

If you had a job before your diagnosis, try going back a couple of days a week when you feel ready/have the go-ahead from your surgeon and see how it goes.  If you haven’t been able to work for a while but you’d like to try, maybe try doing some voluntary work  (charity shops and hospitals are good starting points) for a while before you dip your toes back into the employment waters to get used to having a work routine (even if it’s only a day a week) and to start thinking about what you might find suitable.  After a while you’ll have a good idea of what you’re capable of now and you’ll be able to think about which of the following options may be good for you:

Option 1: Yes I Can Work
Your employer and HR department will be able to assist you back into your job and work with you to accommodate any new requirements you may have (these could be along the lines of needing more frequent breaks, working less hours, having less computer-based work to do, fitting an anti-glare screen to ease headaches if you do need to use computers, etc.).  If you can communicate to your boss what you feel will help you ease back into your role they should be able to provide you with what you need (they have a duty under the Equality Act to make reasonable adjustments to help you stay in your job). Don’t do too much too soon.  Literally go back a day a week and build slowly up from there.  If it’s too much at any point, make sure you speak up.  Communication is key!  It’s easy to feel you’re not doing enough if you were able to work more prior to your diagnosis but this is a very different situation and you are going to need to adapt accordingly.  It can be a nerve-wracking time but just getting back into your work environment can also be massively reassuring and encouraging.  And everyone will be so pleased to see you back!

Option 2: I Can Work But Struggle With My Original Job
This happened to me.  I went back to my job of 5 years thinking I’d just ease back into it. Nope.  That wasn’t going to happen.  After a few months of trying (and feeling very ill throughout) I realised I simply couldn’t do this job any more.  It was a very difficult time; I left with no job to go to and no idea of what I could do now (I was very symptomatic with visual distortions, hearing distortion and terrible headaches.  Literally doing anything other than flopping periodically on sofas was too much).  My desire to work was very strong however so I knew I had to find something else.  Time to think outside the box.  My job had been a high-pressure, long hours work environment (which I actually loved) and involved a ton of computer-based work.  None of that was going to work for me now.  If this sounds familiar to you, here are some ideas of what to consider:

  • Could you work from home? 
    hoshionlaptop2

    Working from home = having your own ‘assistant’.

    Do you have a quiet space you could get some work done for a few hours each day?  If so (and you have a laptop or computer and a phone), it is quite possible to consider home working.  I started looking on websites and in papers  but this is going back 18 years!  Now employment sites such as Indeed, WorkingMums and Fish4jobs have whole sections dedicated to work-from-home positions; in fact if you just Google ‘work from home jobs’ you’ll find plenty of resources!  They may not be the most inspiring or career-building options but they can provide a good starting point for you, give you something productive to do and a positive focus if you’re worried about your work future.  It may not be perfect but it can be a great stepping stone.

  • Think about the skills you have.  What are your passions?  What have you always fancied doing?  Is it possible to turn into a reality? You may think it’s too big a leap to take but trust me, it’s one worth taking if you are harbouring a career dream you haven’t yet fulfilled.  Of course being your own boss means you can accommodate dealing with any symptoms you may be having much more easily day-to-day!  It’s amazing what you can turn into income if you put your mind to it.
    Regency Delights

    Regency Delights – our re-enactment crew in Brighton Pavilon.

    As well as singing tuition, I started up a company with 3 friends as we liked the idea of doing Regency re-enactments in Brighton (being a Regency city).  So we did it.  Idea-turned-income.  Singing comes naturally to me; acting does not.  I still get so nervous before any event that we do but pushing myself out of my comfort zone is never a bad thing.  I always have so much fun in the end.  And I get paid for having that fun; win, win.

  • Look at training options. If you feel like branching out on your own, have a look at local courses which might help you.  Your local library can be a good starting point.  Check out adult education courses in your area.  The OU is of course always a good option if you’d like to consider a degree.  Join a local group focusing on your area of interest and talk to members there for ideas; often talking your ideas out is the first step to your new career. Meetup is a fab idea..you can use it on a computer or your phone; basically loads of groups meeting in your local area, covering everything from fitness to socialising to business-startup discussions.  And if you can’t find what you’re looking for, you can start your own Meetup.
  • Check the details. If you have a good idea of what you’d like to do, also check out what you legally need to do to get things up and running.  The government website has a good introductory section.  Startups also has lots of helpful information.
  • How I changed my career by feeling the pee-your-pants-fear-and-doing-it-anyway: I remember feeling a very strange sense of elation when I’d got over the shock of losing my job.  I felt now I could do anything I wanted to do.  Which was a bit daft because there was nothing actually stopping me doing whatever I wanted to do before, only I was on a path which had felt a bit conveyor-belt-like. I felt unable to get off it.  Looking back, I know I wasn’t truly happy.  Only nothing was THAT bad so I felt it was wrong to want to speak out and totally change direction. whichwaytogo Being diagnosed with a life-changing condition seemed to give me the courage to do it.  I loved singing and had been trained all my life so I joined a band as soon as I was able.  I didn’t plan to make a living as a band singer but it we were doing paid gigs so it was a little income.  I decided to better my skills by learning guitar whilst I was still recovering from my surgery.  I went to a little music studio called Nick’s in Brighton to look for a guitar to buy.  The owner got chatting to me (he was teaching the bass guitarist in my band at the time) and offered me a job as a singing teacher at the end of our conversation.  I thought he was nuts.  He was serious.  He gave me as many intensive training sessions in teaching as I could manage (I was upfront about my health situation from the get-go), booked me in with my first student a month later (who booked again for the next week and brought her friend who also booked a lesson with me) – and hey presto!  New career.  True, I was so completely terrified before my first lesson that Mum had to take me for a coffee and then frog-march me to the studio to make sure I didn’t do a runner, but I remember the immense excitement that I also felt.  It was scary as hell.  But just closing my eyes and stepping off the ledge made me realise that I wasn’t necessarily going to fall. Instead, it was up all the way after that.  It wasn’t an instant arrival; I had a lot of training to do along the way in terms of teaching skills.  I had to absolutely cement my understanding of the voice, how it worked and how to communicate that easily to people with all manner of different vocal styles and abilities.  It took a year or so for me to really become confident as a teacher; the fact all my students were booking repeat lessons with me for months on end was also a good indicator!  I spent over 15 years working as a (successful) singing teacher and even though I’m now employed (as opposed to self-employed), singing tuition will always be something I can fall back on with confidence should I want or need to.

Option 3: I Can’t Work – Now What?
This may be true for a period of time, or it may be permanent.  Whatever the time scale, the most important thing is to not despair. The overwhelming message I get from people who are unable to work due to their hydro is that they feel guilty for ‘doing nothing’.  Losing the ability to work following an illness can be devastating but it’s crucial to remember that this is NOT YOUR FAULT.  You know this.  However.  Since 2012 the government has been drip-feeding through the following narrative, lauding people who work as being those who ‘do the right thing’.  Not that you probably need examples, but here are a few: ‘for too long, we’ve had a system where people who did the right thing – who get up in the morning and work hard – felt penalised for it’ (George Osborne, 2013), ‘you are rewarded for working hard and doing the right thing’ (David Cameron 2012), ‘they uphold their end of the deal – they do the right thing, they work hard, they pay their taxes’ (Theresa May, 2016)….and so on. carljungquote I know I don’t have to point out the problem with this to you.  If you are not able to work it is perfectly understandable, having faced years of the above being broadcast over and over in much of our mainstream media, to be questioning whether you are now theoretically doing the wrong thing by not working.  Of course you’re not doing anything wrong.  But when I receive frustrated and fearful emails from those of you unable to work and navigating the benefits system designed to help you – and getting refused, having assessments rejected and having to wait weeks for payments – it makes me so mad because this can feel like a punishment for not being able to work.  And on top of the ‘do the right thing’ rhetoric it can be very damaging.  So.  I say to you to the following if you find yourself in this situation:

  • Don’t feel guilty.  Being ill is not your fault (no matter what anyone says)
  • Make sure you have support (friends, family, GP; anyone you feel has your back)
  • Get armed with all the information you need (see below)

This is really important: USE THE CAB (Citizen’s Advice Bureau).  I cannot stress enough how good they are.  They will tell you what benefits you can and cannot claim, will help you fill in the forms, give you legal advice and all manner of things besides.  Check out the main website for your local branch and book an appointment (you can get advice on everything from housing to health as well).

What Help Can I Get?

This will vary from person to person.  It will depend on whether you’re single or not, have children or not, have savings or not – it’s impossible to give a generic answer!  Your local Citizen’s Advice will be able to give you the right pointers but you can also use these Benefits Calculators to get a rough idea for yourself.   Here’s a quick run-down of what you may qualify for though:

  • PIP (Personal Independence Payment – taking over from Disability Living Allowance or ‘DLA’).  Valid for those aged 16-64.  Assessments take into consideration mobility and ‘daily living difficulties’ – including preparing and eating your own meals or washing and bathing. DLA is still available for children under the age of 16.
  • Attendance Allowance – a tax-free benefit for people aged 65 or over who have a disability and need someone to help look after them.
  • ESA (Employment & Support Allowance) – for those unable to work due to an illness or disability (replaces Incapacity Benefit).  This is the benefit for which you are likely to have to attend a Work Capability Assessment.
  • Disability Element for Working Tax Credit. This is available for those who are able to work 16 hours a week or more and who either claim a disability-related benefit or have been unable to work due to illness or disability for a period of time before starting back to work.
  • Housing Benefit.  Definitely apply for this if you’re going to struggle with your rent. You should also get a reduction in Council Tax if you’re single or earning below a certain threshold.

All these benefits are designed to help you whilst you cannot work and support you back into work if you need that help.  The application process can be laborious, I’m not going to lie…once again, your friends at CAB can help you with application forms and making sure you give the correct information.  I also found staff at my local JobCentre Plus to be very helpful with this sort of thing too so it may be worth also popping in to see them.

So What If I’m Not Ill Enough To Claim PIP/ESA But Not Well Enough To Work Full-Time?

Ta-daaaaaaaa! Welcome to my world, friends.  I’ve fallen between these two stools for years.  I tried working full-time again (hahahahahahaaaaaaa!!).  I applied for DLA (refused).  CAB told me to apply again as I should get it (refused).  I ended up applying 4 further times (refused, refused, refused, refused). I still had to pay rent, council tax and bills.  I had to feed myself.  Not easy when you can’t work full-time and working part-time isn’t enough to live on but you also don’t qualify for ‘disability’ benefits because according to the government, having repeated brain surgeries and a lifelong chronic condition which has constant symptoms doesn’t make you ‘disabled’ enough. screams internally I remember at an assessment being asked to walk around a table twice.  Whilst I did it, I asked the assessor how my being able to walk twice around a table (no problem) had any bearing on the effects of intracranial pressure-swings (at the time a major problem).  He didn’t reply.  He also had never heard of hydrocephalus; I had to explain what it was and spell it for him.  At the time I was having bad visual distortion in my left eye due to an angiogram mishap and kept crashing into things when it hit due to temporary blindness.  No prob for the workplace apparently though!  This was when I was really unwell and shouldn’t have been working; of course they found me ‘fit to work’.  Luckily back then a GP had some sway in such decisions; mine was furious and sent a strongly-worded letter outlining the complex issues I was having and to my (huge) relief, I was pardoned and allowed to lie on the sofa until my head pressures had calmed down and the damaged nerves in my eye had healed. This didn’t cheer me up at all; I wanted to work; I was simply unable to at that time.

I know that now things are much more difficult for applicants who have chronic illness; it simply isn’t recognised by the government as being satisfactory for disability-related support in many cases and this is a huge bloody problem.  Chronic illness means you have good days when you could do some work and bad days when you can’t.  But the current system requires you to be pretty severely disabled on most days in order to qualify for help. So if you’re able to work a few days a week only, that’s it.  The fact you can’t change that situation and are stuck with it for life is disregarded. Unfortunately this is not an issue I can wholly address (or give suggestions to fix) here.  Unless Esther McVey is reading this.  In which case; stop believing this system works and sort it.

So how do you manage if this is your situation?   The best thing to do if you want to work but can’t work full-time is:

  • Find a job you can do comfortably and enjoy (part-time)
  • Get housing benefit to help with the rent (it won’t apply if you have a mortgage)
  • See if you can work 16 hours to qualify for the Disabled Element for Working Tax Credit (I was on this for a long time before I became too ‘well’ and it was a really huge help) and maybe some ESA if you can only work a few hours.
  • Finally, spend time doing things which make you happy, with people who make you happy and take each day as it comes.
  • NEVER FEEL GUILTY. Celebrate what you are able to do. Embrace each personal achievement, no matter how small.
  • And remember…..

tenor

2 Comments

I’ll Get Back To You All Very Soon…

May 29, 2018

Hi Everyone,
Sorry for the long absence.  I’ve got strings of messages from you all to get through and I promise I’ll try and answer them all.  I’ve got a weeks holiday coming up and I’m putting aside a couple of days to do that so if you’re wondering if I’m ever going to reply to you, the answer is yes!  Just been a very busy period of work and life adjustment…which I’ll fill you in about soon too.

Jordan x

4 Comments

‘We Need A Cure!’ – Why I Don’t Ever Say That On Here (And Also Why I Understand Why Others Do).

October 11, 2017

I love September as in my mind it’s the start of Autumn (my favourite season).  I run to my own timetable and declare the 1st of September to be the first day of Autumn (even though it isn’t) because I love it so much and I don’t really care that I am factually incorrect.  I get all happy and excited and start taking waaaaay too many photos of red and brown leaves, conkers on the ground and squirrels running around with horse chestnuts in their mouths.  I’m probably quite irritating with it.
What I didn’t realise this year is that September had been selected as ‘Hydrocephalus Awareness Month’ in America by the Hydrocephalus Association (HA), a worthy organisation which focuses on finding a cure for hydrocephalus as well as providing information and community resources for those affected by the condition in the States.  Whilst I am all for raising awareness for medical conditions (writing this blog does that a little I suppose), I do sometimes struggle with the many ‘we need a cure now!’ messages regarding hydrocephalus that find their way onto my social media pages (I get tagged a lot!).  I never post them.  The first thing I do is untag myself so they don’t show up on my account.   The reason for this is because whilst I do think that yes, a cure for hydrocephalus would be a wonderful thing which would alleviate a lot of suffering for people all over the world,  I have personally found that doing what I can to improve my life right now, with hydrocephalus, makes me feel far more hopeful than holding out for someone else to come up with an outright cure and solve all my health problems for me.  A total cure may well not happen in my lifetime; after all, hydrocephalus has been affecting people on planet Earth since human brains developed.  Hydrocephalus symptoms were regularly described by Hippocrates (born 460 BC; that dude is old) – and so far a cure has still not been found, despite the awesomely jaw-dropping developments in medicine which have kept us all alive thus far.
The actual causes of hydrocephalus can be in themselves a bit mystifying.  I suddenly got it out of the blue when I was 26 after a gym session…well, maybe I didn’t actually develop it right that second but that’s the very moment the headache which I still have now made itself known.  The docs never discovered a concrete reason for it.  And I have a very complex case which has proved notoriously difficult to effectively treat over the years as even the teeniest adjustment in pressure causes my brain to throw a complete, over-the-top, diva-esque hissy fit of a tantrum.  My neurosurgeon, who is the top in his field, told me he’s not even sure which category I should fall under!  So for a total cure to be found which will suit everyone…well good luck to those who are trying.  And I honestly mean that ever so sincerely.
Shunts, to me, are downright amazing.  Yes, they fail.  Yes, they get infected.  Yes, we have to undergo a brain surgery to put them in, take them out and fix them.  But if it weren’t for that unassuming device in my brain right now, I’d be dead.  Simple as that.  And I’m really glad I’m not dead because then I’d be missing out on Autumn.
To me, the most positive thing I can do whilst living with a condition which hurts every day and for which there is no cure is to live my life in the best way possible; to try and socialise, to try and work, to try and do all the little, strange things which make me happy and to deal with the bad days (usually by keeping myself to myself and just getting through them knowing that they, too, will pass).  The reason I’m writing about all this today is that some of the messages I’ve seen on social media highlighting the ‘need for a cure’ and the call for ‘no more brain surgeries’ (which has been highlighted by ‘#nomorebs’ on social media) have worried me a bit.  Whilst I understand the sentiment – and frustrations! –  behind these messages, I also feel they are not all that helpful to people like myself, who have and will face more brain surgeries in order to survive.   No alternatives to brain surgery in terms of treatment are offered in these social media posts demanding an end to brain surgery…what are the choices for us if not that?  There are actually ways of treating hydrocephalus symptoms without a shunt in some cases…medication to reduce the amount of CSF production if the individual’s brain is able to drain a small amount on its own…but in cases like mine, where I’m 100% shunt-dependant, there is no alternative.  So to present brain surgery as nothing but negative to me is not that helpful.  Those of us who’ve been through brain surgery or surgeries know…it’s not good.  It sucks.  We’d all love to never have another one, ever.  But if you’re reading this and you’ve had a brain surgery, you’ve survived it, got through it and are well enough to be sat here reading.  So hey, we’re alive from that brain surgery!  We rock!  Virtual high-fives all round!
I would say that although I get the hope behind the particular campaign I’ve mentioned, although I understand the desperation felt by families of children and individuals facing their umpteenth surgery, for me focusing on the here-and-now is the best way to cope.  One hour at a time, if you like. Maybe one day there will be a cure.  Maybe one day there will be ‘no more brain surgery!’.  But right now, even though all those healthcare professionals and researchers are working as I type to achieve just that, we don’t have a cure and we will have to face more brain surgery (most likely).  So I say focus on the positives.  Don’t dwell on what you’ve missed out on due to being ill.  Think about what you can enjoy, NOW, since you recovered from that surgery.  Don’t regret the negative impact that surgery and illness may have had on your education and career.  Think about firstly what a freaking achievement you’ve made getting through what most people would never want to face.  Think about what you CAN do in terms of work and study…and adapt accordingly.  You may have to do things a little differently to the way you’d imagined but I’ll bet there is a whole load you can do with time and consideration.  If you’re struggling with your symptoms, talk, talk, talk to your surgeon and team about options.  If you’re hitting brick walls with that, go to your GP for a referral.  If you gather the support of friends and family and keep focused on what YOU can do, even though I know it’s hard when you’re feeling generally crap, you can make changes for your own life, no matter how small and that can feel so empowering.  And then you can leave the hunt for a cure and no more brain surgery to the pros whilst you marvel at the positive changes you’ve made, for you, right now.
I do hope we will one day have a cure.  And I totally get and respect all those who are crying out for one.  But I also say it’s okay to look at your situation and think ‘okay, this isn’t how I planned things and it feels really bad right now.  What can I do?’.  And if the #nomorebs social media hashtag comes true, great…just don’t forget to thank #brainsurgery for all it’s done for you so far because without it you most likely wouldn’t be revelling in the beautiful colours of Autumn and the cutesy little squirrels and the smells of bonfire smoke and…what do you mean, ‘that’s just you’?!

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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?

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You Asked; I Answered – Shunts, Lifestyle & Strange Feelings.

June 2, 2015

**03 September update: I’ve been asked a couple of times recently about shunt malfunction symptoms so I’ve just posted the answer I gave to a recent letter below as the first question/answer under ‘shunt worries’ (with a few more bits of info!).**

*February Update* I have received a lot of emails overnight regarding this post (all good!)…it seems many of you are finding it useful.  I’ve also had some more questions so I shall keep this post up and update it as more relevant questions come in.  Also, many of you are sharing amazing things in the comments section of each post, so if you want to make contact with others in the same situation as you, have a read through then and maybe reach out if you feel so inclined!  This is a place for sharing and hopefully for putting people in touch too!

So in February I asked if anyone had any questions they wanted answering….and the answer was ‘yes’!

question markYou sent in a whole bunch of questions; some about lifestyle, some about surgeries, lots about strange feelings and ‘is this normal?’ concerns.  I’m so sorry it’s taken till the beginning of June to answer them all.  Things have been very busy on the Shunt Donation Project-front (which actually has developed into so much more than just shunt donation) and I shall update this in a separate post next week. As I got so many questions, many were repeated so I have divided the questions and answers into categories so you can hopefully find the answers you need quickly rather than scrolling through a sea of mixed-up topics.  I have not published any names (confidentiality is key!) and I have answered them honestly (if I don’t know the answer, I won’t try and answer it…although in a couple of cases I have sought expert outside advice – in the form of neurosurgeons!).  I hope you find them all to be helpful!

Shunt Worries

‘What are the symptoms when a shunt fails? Will I have enough time to react and go to the hospital to get treated?’
Shunt failure is the big, dark, spectre which seems to hover over all us shuntees at one point or another! It’s normal to worry about it but I’d guard against becoming obsessive about it as that can be very hard on you…I had my period of that about four years into having a shunt and I had to work hard to stop going into complete panic at the slightest hint of raised pressure. To be honest, in my experience when something has been wrong with my shunt..whether it’s overdraining, blocked or infected..I’ve known straight away. You just feel ‘wrong’. You will probably feel pressure in your head of some sort (this can indicate either low or high pressure as they can often feel very similar), your headaches may well worsen and you may get dizzy. But this can also mean you’re just on the wrong pressure and may need a shunt setting adjustment, not that anything is wrong with the shunt. Of course, you can feel headachey and dizzy if you get a heavy cold or virus too but with a proper shunt malfunction, the symptoms can come on pretty quickly. Uncontrollable vomiting is another common symptom with a blocked shunt and your vision may also be affected; my last malfunction made the vision in one of my eyes go very blurry. These symptoms are usually associated with shunt blockages or overdraining.  With an infection, believe me you’ll know about it! I used to ask my surgeon ‘so does it feel like ‘flu?’, before I had my first and he said it does but it’s more a ‘head flu’ and far more severe…he also said I would just know. And I did. When I got my first infection, I knew right away that I didn’t have ‘flu!  I had never felt so ill.  I had a temperature, my head was raging and my shunt tract was red along my neck; I literally couldn’t move and if felt like the whole of the problem was inside my head – which it kind of was as the CSF was infected!  I think you are right to be concerned about how much time you have to get assessed as waiting times in A&E are notoriously long. But they do tend to move a lot faster when you tell them you’ve got a shunt. If you are really suspecting a shunt malfunction, tell the doctor/ambulance staff that. Be direct and they will no doubt get you into the scanner quickly. If in doubt, go and see your doctor or call the secretary of your neurosurgeon and ask to have a quick chat with him/her. They usually never mind! It’s fine to be wrong and have your mind put at rest.  But as I said, don’t panic yourself into a state over it. You may well have no problems at all. Bear in mind that people tend to post about issues they’re concerned about on here as they are looking for advice or just to sound off but there are a great many people with shunts who just trundle along quite happily! Hopefully you’ll be one of those!

‘Have you ever noticed a throbbing pain on the side of your head that your shunts on near your temple/near your ear? I’ve had them a few times and was wondering if it was normal lol’.
Yes it’s normal…and usually caused by scar tissue.  Scar tissue forms naturally after our body’s tissue is damaged.  The external scars we see, but the internal scars we don’t.  Bruising and scarring goes on under the skin as well as above!  It is fibrous tissue made of collagen which is produced to replace the injured skin.  The downside is that being fibrous, it isn’t flexible and can feel not only tight, stretched and uncomfortable but can also cause a considerable amount of pain if a nerve gets squeezed or pinched by it during it’s formation.  I’ve had scar tissue pain around my shunt valve, especially on my last shunt which was operated on over 15 times before it was replaced.  The skin around the valve became so thin it eventually broke down altogether and you could see the shunt valve itself through a little hole in the skin!  (NOT normal though so don’t worry about that!).  I couldn’t touch the area.  It was a sharp, stabbing pain which would come and go (the cold especially brought it on) and I couldn’t lie on it.  I went to my neurosurgeon, Mr Watkins, and he put me on some medication ….I can’t actually remember what it was now but it helped considerably with the pain.  It’s a complicated problem because operating to remove the scar tissue will only produce scar tissue!  If you have sharp, stabbing or throbbing pain anywhere surrounding your shunt, go and see your surgeon.

‘Hey! Have you ever have a cyst like “thing” going on right by the abdominal scar of a vp shunt?’
I haven’t personally had this but I know a few who have. A couple of them needed to have antibiotics, one had to have it drained and removed and another one just kept an eye on it and no action was needed.  Internal cysts can sometimes be caused by fluid build-up of CSF in the abdomen although this is pretty rare (known a pseudocyst).  They can form after multiple revisions or infections and can get pretty large, causing stomach distention and pain.  These are rare, however, and more commonly happen in younger patients.  Usually cysts on top of the skin contain fluid or semi-solid material and can result from infection.  Skin which has been operated on can become lumpy and bumpy; I have a couple of very ‘textured’ scars on my stomach!  But if you have a cyst, it’s best to get it checked out.  If you feel generally unwell  in addition, it could be a developing infection.  Keep an eye on it and if it’s bothering you, go to the doctor.

‘So this noise I’m hearing behind my ear where my shunt is…IS it my shunt?  Does it mean something’s wrong? It’s starting to worry me!’.
Don’t worry.  It’s very, very, very likely to be your shunt valve working!  When the shunt opens to drain fluid, it can cause a sound very alike to buzzing; it just means that the mechanisms are shifting to allow fluid to drain.  My shunt buzzes a heck of a lot but as Mr Watkins once said to me; ‘it should be a reassuring sound, because it shows that everything is working’.  Well, yes it’s reassuring but depending on how close the valve is to your actual ear, it can also become as annoying as hell!  By the way, if your shunt doesn’t make any noise, please don’t worry.  Some don’t.  My first shunt gurgled sometime but no buzzing happened…which is why when my new shunt was put in, I freaked out a little.  If you feel physically unwell when the buzzing is going on, you may need to check everything is working okay.  But if you feel fine and it’s just the noise that’s bothering you….well unfortunately there’s nothing you can do because even if you put your fingers in your ears, you’ll still hear it!

‘It’s been a couple of months since my shunt surgery (I had a programmable put in) and I still feel awful.  I can’t get comfortable and I was hoping I’d feel better than this.  Does it mean the shunt isn’t working?  What should I do?’.
I got a lot of questions along these lines. And I feel your pain.  Make no mistake, if somebody cuts open your head, drills through your skull, burrows a tube into your brain, all the way under your skin, down your body, into your abdomen and starts syphoning brain fluid out of it and then staples you up, you’re going to feel pretty crap.  For quite a long time.  Even if you previously had high pressure, it doesn’t necessarily mean you’re going to feel miraculously better once that high pressure starts to be relieved. Your brain may struggle to adjust to lower pressure.  You can get vertigo, tinnitus, nausea and horrible head pressure feelings and this can go on for a few months.  The key is to a) have patience and b) don’t be afraid to go to your surgeon if you really cannot cope with it.  It could be that you need your shunt adjusted again.  There is a window immediately after your surgery where you just have to rest, recover and take all the painkillers they give you…and even then it’s not pleasant.  But after about six to eight weeks, if you’re still feeling really bad, it’s probably time to see your surgeon to discuss what happens next.  It took me a year to recover from my second shunt infection which resulted in a full shunt revision and new pressure settings.  My body just couldn’t settle.  But I got there.  And so will you (and very likely in far less time than a whole year!).  Keep communicating with your surgeon and persevere.

‘What do you do when you feel bad all the time…it seems to be one thing after the other with me and I don’t like bothering my surgeon!  Should I only contact them when it’s really, really bad?!’
I got a few similar questions to this!  I really feel for you all because for ten years I was that patient too…I had one thing after another going wrong with me and I literally spent most of my thirties being ill, having surgery or recovering from it.  To give you a better idea, in 2008 the only month that I wasn’t in hospital was September.  For over ten years I had brain surgery on average once every seven months, which when you factor in the recover time, is a long time spent feeling bad!  Neurosurgeons are there to help you.  That’s why (and I know I bang on about this) finding one you can communicate with, who listens to you and who takes you seriously is CRUCIAL.  Mr Watkins is not my first surgeon; he’s my third.  I count my blessings I found him but it took four years of gruelling treatment and uncertainty before I decided enough was enough and that I really needed a different surgeon.  You will get to know your head very, very well if you have hydro!  Listen to it.  And take heed of those ‘gut feelings’ because believe me, they’re often spot-on!  You can feel pretty grotty with shunts without there being anything seriously wrong; it could be the weather, the fact you’re dehydrated or you may need a simple pressure adjustment.  But if you are feeling rough and it’s not getting better, call your surgeon’s secretary.  Make that appointment.  If it’s nothing, your mind will be put at rest but at least your surgeon is also learning triggers which are not good for you; it will help them build up a better profile of your individual situation and of what works for you.  You don’t need to go running to A&E with every little twinge, but if you’re really not feeling good, ACT.  The sooner you’re investigated, the sooner you can get the right treatment and your mind can be put at rest.  As Mr W said to me when I first met him and apologised for turning up in the hospital AGAIN, ‘I’d rather you were here so we can get to the bottom of this than at home steadily getting worse and me not knowing about it’.  True words, spoken by the sort of surgeon you should have or be seeking to have!

‘Does the weather really affect heads?  Because I seem to feel worse every time it rains!  I don’t think my surgeon would buy that though!’
YEEESSSSSSSSS weather affects us! And don’t let the doctors tell you otherwise.  Think about it.  How many non-shunted people have you heard complaining of headaches when it gets stormy?  Quite a few, I would imagine.  If you throw a shunt into the mix, it’s a little more complex.  I used to suffer a lot with weather changes but when I got my Miethke shunt, it kind of put a stop to it all.  Sometimes if it’s extremely wet and windy, I can feel it.  And I generally don’t like seasonal changes (Summer to Autumn or Winter to Spring).  But I know a lot of shunted folk who really do suffer.  It can be a good idea to keep a diary of when you feel really bad and make a note of what the weather is doing that day; you may start to see a pattern.  If you can, make a note of the weather forecasts and try to plan ahead a bit, so if we’re entering a spell of really bad weather (or whatever type of weather which is your trigger) maybe reduce your plans for those days.  Take it easy a bit, have the painkillers on hand and see how you go.  On the plus side, if you do discover a pattern related to the weather, it can be a relief in itself to know it’s not the shunt playing up!

Lifestyle

‘Any words of precaution or advice re long distance flying – problems encountered at security gates etc?’.
Generally people with shunts can fly.  I know many who do.  I choose not to, primarily because I have become so pressure-sensitive over the last fifteen years that even driving up into the local hills can affect my head badly if the weather is wet.  I encounter pressure issues just standing upright at the moment, so I don’t think that flying thousands of feet into the air would be the best idea for me. I also don’t relish the thought that if I do get ill on the flight to wherever it is I’m going, I’ve then also got to get home!  I think you have to be the judge of whether you fly or not…and I would always run it by your surgeon, especially if you planning on a long-haul flight.  Some people are absolutely fine with it but some are not. A friend of mine had to fly to South Africa and after a bad initial flight (she became quite unwell on the plane and wasn’t good for some days afterwards), her surgeon gave her medication to take before, during and after the flights.  And even though she didn’t feel great, she got through the consecutive flights a whole lot better, so medication may be a possibility if you’re worried. You can always start off with a short hour-long flight first to see how you go before going for a long-haul. Regarding the metal detectors, I would say carry a shunt card (you can get them if you’re in the UK from Shine Charity).  That way you can avoid going through and they ‘wand’ you instead (but you have to instruct them not to wand over your shunt valve!).  Some shunt models these days no longer use magnets – mine doesn’t – but to be on the safe side, I’d walk around the detectors instead of through them!

‘Have you experienced any issues with trying to get a job since you’ve had hydrocephalus?’
Yes I have.  I have worked from home for most of my shunted life, after initially trying to return to my old, full-time, office job and lasting only three months!  Again, it depends on the individual; I know so many people with shunts who have such a complex array of fluctuating symptoms that they don’t work at all and some (but to be honest only a small handful) who work full-time.  It irks me no end with the recent skewed rhetoric of people on benefits being ‘scroungers’ or ‘fraudsters’ which seems to have seeped into the mindset of many in the last couple of years (thanks in part to both the government and the tabloid media).  Because let’s face it, it’s hard enough living day-to-day with a condition like this…being told you can’t do your job any more can absolutely floor you.  We need a purpose to get up every day to feel complete and having no job or opportunity to work can be extremely difficult.  However, there are certainly things you can do to improve your chances of work.  Firstly, think about what you’re good at.  It doesn’t have to be office work.  You might be creative and make amazing collages or artworks, you might be great on the piano or you may love writing.  Could you make any of these work for you from a freelance perspective?  Could you teach piano?  Could you proofread documents for people?  Could you set up a website selling your creative goods?  It may seem farfetched to you at first but anything is possible…even when you’re not well a lot of the time…if you put your mind to it.  Some charities and organisations can give you some great advice and help and despite my frustration at some of the statements issued by the government recently, there are some good resources on the government website; try Scope, Shaw Trust,and help page at gov.com.  By the way, most of the help resources refer to ‘disability’; that seems to be the blanket term for people who are physically disadvantaged either by chronic illness or disability so don’t rule them out if you think the term doesn’t sum your particular situation up very well!

I  set up a business teaching singing from home for many years.  When I was well enough, I worked at stage schools and music studios.  When hospital stays hit, I went back to teaching from home when I recovered.  After a particularly nasty shunt infection in my abdomen which resulted in long-term pain, singing wasn’t as easy so I put the word out there and found some work-from-home opportunities via friends.  It’s amazing what will come your way if you put the intent, thoughts and word out there.  Try working part-time in a shop or office and if it proves to be too hard, don’t despair…sometimes we just need to think outside the box a little.  If you cannot work at all, maybe try volunteering one day a week to get you out of the house and feeling productive.  Maybe do an online course or take up a hobby which truly inspires you.  The most important thing when it comes to working or trying to work with a chronic illness is NEVER FEEL GUILTY.  You have enough on your plate without a guilt trip getting in on the act.  Ignore the ‘get people back to work!’ cries from the DWP; if you really can’t do it, you can’t do it and that is never your fault.  I have received a lot of emails recently from people worried sick about DWP work assessments coming up but I’ll cover that in another post another time (soon, I promise).  Take your time, think about what you’d like to do and see if you can make it happen.

‘I read your post about hangovers not sure if I should actually drink at all and my surgeon never mentions it.  Advice?’
That was the last hangover I’ve had! It truly put me off for life!  My advice is to be sensible; if you have a drink and find that it gives you a headache, limit yourself to that one or don’t drink. If it’s okay, probably you have no need to worry as long as you don’t go binge drinking or do anything silly.  I get a headache from one drink so I don’t often drink at all these days. I had a glass of champagne on Saturday at a friends 40th but I made sure I drank PLENTY of water before and afterwards so it wasn’t too bad.  I just prefer these days to not indulge.  At all!  Bear in mind the dehydration side of things…if you have a shunt you need to drink more (water!) than most anyway on a day-to-day basis, so having dehydration after drinking isn’t a good idea.  Just up your levels of water if you are drinking, watch the amount and be sensible.  And you’ll probably have no problems.  Or hangovers!

‘I’m 17 and love gigs but I can’t stand loud noise since my shunt was revised last year.  I either don’t go, or go and suffer.  The cinema is just as bad.  Is there anything I can do?’
Yep..for the gigs, take earplugs.  I’m serious.  I love my live music too and I can go quite happily if I take my earplugs (foam ones).  Yes it’ll muffle things and the music won’t sound as good but it’s better than missing out altogether.  Regarding the cinema, that’s a little harder as the noise levels go up and down.  Once I went and took cotton wool as well as foam earplugs and the cotton wool was much better!  It protected my ears enough but enabled me to still hear the dialogue.  I have tinnitus in my left ear from my first shunt surgery and ever since then haven’t been able to stand loud noises (thunder, balloons popping, cars backfiring, fireworks – I hate ’em all!!).  So cotton wool and earplugs are my new social friends.

I hope these questions and answers help some of you….don’t forget, you can always ask more! I’m going to address this blog more frequently now the last few months of hectic-ness are over so I’ll get back to you more quickly this time. Have a good rest of the month, y’all!

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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.

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What’s it really like to have ICP monitoring? (And…AND!! There’s a video!!)

May 30, 2014
ICP probes and all that jazz

ICP monitoring is a term you may have heard of if you have hydrocephalus.  You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like.  I am a firm believer in the ‘knowledge is power’ school of thought.  I have had about ten or eleven episodes of ICP monitoring so am pretty old-hat at them by now but even so, my latest experience involved some new experiences so I thought it wouldn’t hurt to write a ‘what you can expect’ guide for first-timers.  Doctors and surgeons do have a tendency to be a little blase about such procedures.  They’ll tell you about what they’ll physically do and it all sounds very straight-forward.  But of course they’ve never actually had a bolt screwed into their skulls with a probe sticking into their brains before so in terms of what it actually feels like (which is the bit we patients are concerned with), the experts are the patients, not the healthcare professionals. Looking back, I wish I’d had more first-hand information from a patient who had had it before, especially the removal part as this is done with you wide awake.  I have a lot of patients-to-be on this blog asking me if I’ve had it and what it feels like which is why I decided to make a little video and actually film my bolt being removed – the link is further down.  ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.

Me 'n' My Bolt

Me ‘n’ My Bolt

When this pressure is within normal limits, you generally feel fine.  If it’s too high or too low, you generally feel pretty crap.  The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15.  Of course this will depend on the individual; I cannot handle pressures over +10 and below -12.  If I had a pressure reading of +15, I’d probably have double vision yet I’ve been on the ward many times with fellow ‘bolted’ patients opposite me recording pressures of +25 and not really batting an eyelid!  Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage.  ICP monitoring is a really good diagnostic tool; it reads the pressure every minute of every day and records what’s happening when you’re awake, asleep, eating, standing, sneezing or just reading a book.  At my hospital, the National in Queen Square, they hook you up to a laptop as well which draws out an impressive little graph which shows any spikes or dips in pressure at a glance.  You may have ICP monitoring if you’re feeling generally off and adjustments to your shunt settings haven’t helped, or if your surgeons are suspecting a shunt malfunction of some sort.  I was going to include some photos of the bolt and probe itself but having looked at the pictures I think I’ll leave it as they don’t look like the friendliest of items, to be honest!!  Basically the unit consists of a long-ish probe and a bolt which is screwed into the skull; the probe slides through this bolt and is screwed into place with the nut.  Literally a nut and bolt in your head.  The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic.  It takes only a few minutes apparently.  I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference.  I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all.  I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah.  The hospital you’re at will probably offer you the choice so it’s up to you!

So, my friend the ICP bolt.  Once it’s in, you’re quite literally plugged into the monitor itself, which looks like this:

An ICP monitor....during one of the rare times my pressures were reading as normal.

An ICP monitor….during one of the rare times my pressures were reading as normal.

they usually set the monitor at your bedside and once you’re hooked up, they can read the pressures all day and all night as well when you’re asleep.  You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it.  Once the bolt is in, it does hurt a bit; it’s quite sting-y where it’s been screwed into place and if you raise your eyebrows up it stings even more.  The solution is to not raise your eyebrows up or frown.  Basically, get botox.  You can’t feel the probe inside your head but you will feel it move if you forget you’re plugged in and get up to go for a walk without unplugging yourself first.  Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
It takes a day or so to get used to having wire hanging out of your head.  At nighttime in particular, it’s best to clip the wire out of the way onto your pillow, otherwise as you toss and turn during sleep, you may find yourself inadvertently tugging on it and will get woken up repeatedly with a sore head.  I find it best to use those tiny little hair clips

Clipped and ready for snoozeville!

Clipped and ready for snoozeville!

(get them from Claire’s Accessories or similar) and clip the wire to the top of my pillow, making sure I’ve left enough room for me to roll in the opposite direction without pulling.  Once that’s done, you can get a good nights sleep in.  Just don’t forget to unclip yourself in the morning!
Depending on how long your surgeon is planning to leave the bolt in will probably depend on whether you attempt to wash your hair or not; if it’s only a few days, you can easily leave it.  But for ‘monitor marathons’ like the four weeks I had it in for, you’ll probably want to at least try to wash your hair at some point!  This is possible but you just have to be very, very careful; getting the bolt wet is not an option.  It takes a bit of practice, but it’s do-able;  I have found over the years that the easiest method is to gather the wire in your mouth to keep it well out of the way, make sure you can see yourself in a bathroom mirror (so you can see as well as feel where you’re directing the shower spray) and if you can’t see your reflection, get a friend/family member/nurse to carefully place some towelling around (not on!) the bolt to keep it dry.  Then, when you wash your hair, you simply wash up to the towel.  As long as you keep the bolt and surrounding area dry, it’s okay.

Keep the wire out of the way and avoid the bolt...then just wash 'n' go!

Keep the wire out of the way and avoid the bolt…then just wash ‘n’ go!

  Some hospitals are stricter than others about this but to be honest I’ve never known any hospital keep ICP bolts in heads for as long as they do at the National, so the staff there are pretty understanding about it! Besides, I think it actually helps to keep the surrounding hair clean and not let it get very dirty over weeks, to help reduce infection.  I have no idea if that’s actually true but it makes sense to me!

Adieu, Lil’ Bolt, Adieu

Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will be awake for.  It only takes about five minutes to do so you can understand why they don’t bother going through the whole ceremony of an anaesthetic and besides, apart from the stitching-up bit, (which does hurt), it’s really not too much of a bother.  I won’t lie; it feels weird.  After spending all your time when it was in trying not to knock it or bang it or get the wire caught, it does feel very wrong to have someone suddenly grappling and tugging at it.  I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – but in case you don’t want to watch it, I’ll describe what happens as best I can.  First they get you to lie flat.  This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat.  A nurse or medic will start off by unwinding the plaster or dressing which surrounds the bolt itself, usually soaked in iodine to keep everything clean.  Then they’ll unscrew the nut on the bolt to loosen the probe itself.  This can feel a bit strange, but noting too odd yet.  When they actually pull the probe out, sometimes they’ll ask you to breathe out sharply after three, and remove it on ‘three’…this time they didn’t ask me to do that and all I felt was a slight sting and a strange but very fleeting feeling in my head…then it was out, in a second.  After that (and you’ll see this in the video) it can feel like it’s all over – I keep asking ‘is that it?’, rather hopefully!  But no, they then have to get the screw out of your skull.  This is the bit that does feel odd; the screw is obviously screwed in tightly on insertion so it can be a bit of a job for them to undo it.  My advice is just breathe slowly!  When they take it out it stings again but nothing terrible.  After that they’ll clean the area with iodine; it’ll feel sore but it’s quite a relief to know it’s all out and done with!  The final thing for them to do is stitch you up; you may not actually need this but I lost some CSF when they took the bolt out so I needed quite a deep and tight stitch.  Now, the truth is this bit does hurt.  A lot, if I’m completely honest.  I’ve not met anyone who’s had this bit done and who hasn’t thought it to be pretty darn painful.  You can actually get a local anaesthetic put in first before they stitch you up if you want, but having had that once, I’d say it’s not really worth it because it takes about three injections to properly numb the area and that really stings in itself!  Best to just grit your teeth, get something to grab hold of and get on with it!  In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit!  It really, really hurt because they had to pull it so tight to stop the CSF leak…it definitely hurt more than any other one I’ve ever had if that’s any consolation!  I think it’s because it had been in so long; the longer it’s in, the sorer it gets.  But after I’d had a good slug of Oramorph, it died down after about an hour.  And that’s it!

Yay! It's gone!

Yay! It’s gone!

  Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore!  Freedom!  You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home.  Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards.  Mine did this this time around but it’s never done it before and I know from the experiences of others that it is very rare.  I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards.  But all that happened was that I was kept in, monitored closely (a CT scan was done but came up fine), given as many painkillers and anti-sickness as I needed and was only allowed home when I felt well again.  It was a real surprise that this happened because I did feel very awful indeed, but it was a first.  It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive.  But I have always said I’ll be truthful in this blog so I wasn’t going to lie about what happened this time around.  Generally though, ICP monitoring is a little tedious (being tethered to machines is unusual) but is really, really helpful to your surgeon to determine exactly what your head and your shunt are doing so it really is worth having it done if it’s needed.  The discomfort passes and you will hopefully feel loads better afterwards.  Plus it makes for some very interesting photos to send to your friends/family/boss to impress them!

At the end of the day, although it’s not something I’d opt for voluntarily (given a choice between a days shopping and ICP monitoring, I know what I’d plump for), ICP monitors can really help get to the bottom of not-too-obvious shunt issues and this helps you get better more quickly.  And best of all, they’re pretty darn safe.  And when it comes to our brains and our health, that’s what we want!

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There’s No Place Like Home; Dorothy Was Right About That.

October 22, 2013
Hospital Then Home Sweet Home….

Yay!  I’m home! Three-and-a-half weeks in hospital, one ICP bolt, six pressure changes and one nasty post-operative episode later, I am home.  I love my home so much that it’s very hard to leave it, but even better to return to.

My little house...soooo pleased to be back!

My little house…soooo pleased to be back!

As you will know if you read this blog, I’ve been struggling with bad symptoms for a few months now and the recent stay in the National Hospital was to determine just what was going on (if anything) with my shunt.  I’ll keep it short due to having been in there for weeks; we’ll be here till Christmas if I tell you everything in detail.  I had an ICP monitor placed in my brain on my second day there and that stayed in for three weeks.  An ICP monitor is a probe which sits in the brain and which, when hooked up to a monitor, reads the intracranial pressures every second.  It charts them out as a graph as well so that neurosurgeons can look for any abnormal patterns or pressures.  There is more on ICP monitoring  in a post I’ve nearly finished, with a video of mine being removed for anyone who is facing their first and might be a bit worried about what it all entails. I’ll link to it here once it’s finished in the next couple of days.  Once the bolt is in your head, it looks pretty odd but it’s okay.  Here’s a picture of me totally rockin’ the look.

It's a winning look, let's face it.

It’s a winning look, let’s face it.

This time around the pressures were very low to begin with, so Mr Watkins tried increasing the setting on my shunt in stages initially to try and get the pressures to read a bit more ‘normal’.  However..nothing happened.  I was on setting six to begin with and by the time we’d reached setting thirteen, still nothing was happening with the figures on the monitor screen.  The only thing happening was my brain going into a tailspin of pressure every time the shunt was adjusted.  We discovered that increasing the pressure in twos or threes wasn’t doing me any good; my brain clearly doesn’t like being tampered with on any level so we resorted to increasing the pressure just one at a time and giving me a couple of days to recover afterwards before we moved it again, hence the long hospital stay!  When we reached setting fourteen, everything suddenly started to shift and within hours I had high pressure symptoms, which was odd to say the least.  Mr Watkins thought that maybe my brain didn’t need the shunt now as much as I had done before, but that didn’t explain why nothing happened on settings six to thirteen; if my brain was draining partially on its own now, that would surely have been reflected on all the shunt settings, not just number fourteen.  I am now on setting twelve and that is where I have been for two weeks.  The team agreed that I needed to go home and rest my brain, especially after the ICP probe was removed; my head didn’t like that one little bit and I became very ill (which is very rare as I’ve had about eight or nine bolts removed with no problem whatsoever).  Setting twelve is now proving to be too high so tomorrow I am going back to the National to see Simon and have the pressure reduced to setting eleven, to see if that starts to help.  I really want to get back to normal so I’m praying that it does.  So for the last week I have been resting and chilling out in my lovely little home, pleased to arrive back just as the turn of the season is about to commence.

Yes. Sheep and the Tardis in the field next to my home. I don't get it, either.

Yes. Sheep and the Tardis in the field next to my home. I don’t get it either.

  Autumn is one of my favourite seasons, along with Spring.  The trees are just starting to turn from green to golden browns, reds and oranges and the air is full of the scent of Autumnal bonfires.  The squirrels are back, sourcing their Winter food supplies for their kitchen cupboards and the whole countryside is full of earthy, woody, rainy, smokey scents.  Blissful!

Lovely Autumn evening light

Lovely Autumn evening light

I adore the Winter months; don’t get me wrong, warm sunshine on your skin can feel great but I’m always relieved to leave Summer behind as I can’t tolerate heat too well; my loves are the rainy, foggy, crisp, cold, snowy Winters and the Autumns which proceed it.  Of course, living in the countryside helps fuel my passions!  I get all the glorious scenery and wildlife here too.  My cat, Hoshi, is pleased to have me home and that’s a slight understatement.  I had an excellent cat-sitter staying here for two weeks and the remainder of the time my Mum and a friend stepped in.  A plus point of living in such a gorgeous property in the countryside with a hot tub in the garden is that people are more than happy to come and stay in it whilst feeding the cat.

Hoshi. She likes to warm her bum on my laptop for some reason.

Hoshi. She likes to warm her bum on my laptop for some reason.

I haven’t been able to get Hoshi off me, to the point where I look as though I have grown a furry appendage as she’s constantly lying across my shoulders as I go about my business, looking like some strange furry fashion accessory.  Which purrs.
Two good things happened during my hospital stay which were totally unrelated with my head.  Firstly, Lewis Thorne (the neurosurgeon who is assisting me with my shunt donation project) came to see me on the ward (‘social visit!’ as he put it) and after general how-are-you-and-what’s-happening chat, he told me that he’d sourced some expired shunts in the National that he was putting aside for us to send out.  Hurrah!  From what he said it sounded like there were quite a few of them.  He’s on leave for a bit till early November so once he’s back I can hopefully go and have a look at them and get them out to countries in need.  Hurrah for him.  I also had an email from a donor I’m not allowed to mention because they would rather be kept secret, but it’s from a lovely hospital who also emailed me to say that they have a lot of surgical equipment for use in neurosurgery to give me.  Some UK guidelines have recently been amended so they cannot be used here anymore but they are certain they would be absolutely fine to use in areas lacking in equipment.  I am meeting with the donor tomorrow morning to have a look and pick them all up, then when Lewis is back I’m going to ask him for a little lesson in ‘identifying totally alien neurosurgical utensils’, as I didn’t recognise anything that was mentioned and don’t have a clue what it all does! So…shunts AND surgical equipment!  T’was like Christmas.
The other good thing that happened involved another neurosurgeon.  George Samandouras also works at the National and (I am certain) oversaw a fairly major surgery of mine in 2011 when Mr Watkins was out of the country.  He writes a blog about his work which I stumbled across at the beginning of this year and it was through reading his blog that I became inspired to start this one, to log my shunt donation project and to keep myself motivated.  Mr Samandouras includes amazingly inspiring quotes (his own!) in his blog and I was so impressed by some of them that I wrote a few of them out on Post-It notes and stuck them on my fridge.  One is ‘it’s fascinating how human beings allow our performance to be affected by what other people might think of us! I find this extraordinary’ (this one helped when I worried about being laughed at by senior neurosurgeons who might think I was crazy in trying to stop the disposal of perfectly-useable shunts). The other one (which I still have up) is; ‘you know how they say “good things happen to those who wait”? Rubbish!  Nothing happens to those who wait! Good things happen only to those who take action.’ Brilliant.  Every time I felt myself slacking on my project, I’d read his words and get back to it.  Anyway, having read his blog avidly all year (re-reading it often too), he walked onto my ward the first week I was there.  He was treating a lady opposite me and he came to talk to her.  He was there some time and I went to the bathroom and was thinking about everything I’d gained from reading that blog of his, how he had literally inspired me into action and as a result (hopefully) my dreams of getting unused shunts over to children in need might be realised.  As I came out of the bathroom he was leaving the ward, walking towards me.  I wanted to thank him for writing it, for inspiring me so much…but I became completely and utterly tongue-tied!  Some people get star-struck meeting Madonna or other such celebrities; I become star-struck at the prospect of meeting Mr Samandouras!  I quickly told myself to stop being such a loon and stopped him, introduced myself and thanked him for his blog and his inspiration.

I stand outside the hospital some evenings when it's calm and quiet; it feels very safe to be here.

I stand outside the hospital some evenings when it’s calm and quiet; it feels very safe to be here.

He was, as I predicted, totally charming and engaging and seemed genuinely interested in my situation; not that neurosurgeons are not genuine, only I didn’t feel he was just being polite.  I want to link his blog to this one if he would allow it so I’m going to ask his permission first. But in case he’d rather not, I urge you strongly to look him up on Google and read the blog word-for-word.  It doesn’t matter if you’re not interested in brains!  He talks about all manner of things which inspire him, from music to travel to writing with a fountain pen.  I promise you it’ll be time well spent.  The man doesn’t have twenty thousand followers for nothing!  (Update as of 24th October; Mr Samandouras emailed me this morning to say he’d be happy to link his blog to mine and also congratulated me on my ‘very well-written blog’.  I went as red as my hair so it’s a good thing nobody could see it.  Here is a link to his blog: please read and enjoy).
So tomorrow it’s back to the National…today I am feeling pretty rough so I am hoping that the adjustment will take me in the right direction.  There may be no place like home but there is also no place like the National for when you’re feeling brain-weary.

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