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
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.
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.
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.
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?
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, WorkingMumsandFish4jobshave 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 – 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. TheOU 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. Meetupis 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.Startupsalso 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. 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. 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 Plusto 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. 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.
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.
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’?!
Sorry for the delay folks! This video had to be taken down to edit something out for a couple of weeks so I couldn’t access it until it was finished. If you haven’t seen the film ‘The Big Sick’ I’d really recommend it; it was so much better than I’d anticipated and really addressed many issues which I think we all face from time-to-time in our hospital/illness experiences! Dr Khalid Ali is a lovely guy; such a pleasure to be able to do this with him. We had many people watching from all over the world as it was streamed live and it was a big surprise to meet one of my blog readers afterwards who’d come along specially…so lovely to touch base!
Anyway, hope you enjoy this…and no, I had not idea I move my hands and arms so much when I’m speaking!! Next time I shall be sitting on my hands….
After a few years of snatching spare bits of time to get what started as the ‘shunt donation project’ off the ground, I feel that it’s finally getting to where I wanted it to be.
The idea started back in 2011 when I was badly overdraining and waiting for a bed at the National Hospital; I felt so terrible that I was online searching for…what? Something. Some hint that I wasn’t the only one going through this, I suppose. I used to do that rather a lot when I felt physically awful and emotionally drained from feeling permanently ill and preparing to go through yet ANOTHER brain surgery. It never really helped; all I’d uncover were horror stories of brain-surgeries-gone-wrong. (If you find yourself in the same position at any time, may I suggest going to Shine if you’re in the UK or the Hydrocephalus Association if you’re outside of the UK?). Both offer excellent advice, reassurance and have community links where you can chat to other people in the same boat as you….AVOID THE HORROR STORIES AT ALL COSTS.
Anyway, (a quick recap for new readers), I stumbled across a film from Vietnam highlighting the plight of children and babies with untreated hydrocephalus and mentioning that shunts were sometimes donated from hospitals to help with the treatment. To cut a very long story short, I started to gather what information I could on the situation and started asking hospitals if they had any spare shunts. This took a good year as I wasn’t actually well enough to do much at all (I was having brain surgery on average once every 6 months at this time…this went on from 2000 to 2013). When I finally had some breathing space in 2014 I teamed up with a consultant neurosurgeon at the National Hospital in London (Lewis Thorne) and we co-founded Action For Hydrocephalus, which was finally registered as a charity at the end of 2016.
Goal achieved; one of the children after a successful shunt surgery using our donated items (Ethiopia, April 2017).
We are now three, as we were joined by another neurosurgeon from Great Ormond Street Children’s Hospital (Greg James). So far we have sent donated shunts and neurosurgical equipment to Uganda, Kenya, Vietnam and Ethiopia.
In 2016 we teamed up with Reach Another Foundation, who work in Ethiopia. We’d donated shunts to them before but Dick Koning (Founder) thought there were more possibilities by working together. We’ve met a few times and are now partners. Dick and his team regularly operate on babies and children with hydrocephalus and spina bifida as well as training neurosurgeons. We are in discussions with regard to a possible training exchange with the UK (so we’d fly surgeons out there to train Ethiopian students as well as having them over to the UK to observe shunt surgeries here). We also help equip their expeditions to Ethiopia as there are no neurosurgical instruments available out there; without equipment and shunts no surgeries are actually going to be possible.
Running a charity from your living room (the meetings are held in London but all the other work is done at my house) can be a messy business. More often than not my little home has shunt kits, boxes of neurosurgical items and a lot of paperwork lying around .
Shunt kits can be rather big. Cats can be rather nosy.
Keeping my inquisitive cat out of the boxes and packaging is one task. Not tripping over them is another.
One downside of my hydrocephalus is that I’m so pressure-sensitive I can’t fly on planes any more. So I can’t actually get over to Ethiopia myself (yes I know I could go overland but it would also render me bankrupt). So getting photos and feedback from the team who’ve received and used the donations is nothing short of wonderful; to see the children after their surgeries, knowing that a shunt is now safely inside each of their heads and that now the hideous feelings of high pressure will start to be reduced, literally lifts a weight off my shoulders. I know first-hand how high pressure in the brain feels. To have it without the knowledge that it will soon be treated is unthinkable to me. Being ill in hospital isn’t nice but it could be so much worse; I always count myself very lucky to have been born in the UK with access to hospitals, surgeons and healthcare – none of which I have to pay for directly. Very. Lucky. The most recent expedition to Ethiopia was just last month in April. Dick had emailed me a few weeks prior with a list of equipment which was urgently needed and asked if I could help. This is when holding down two jobs and trying to get charity work done becomes a little tight. Luckily this time, as before, I had two very understanding donors who acted immediately.
One donation, two donation, three donation, four!
The companies who donate the actual items we send out are absolutely crucial. Without them, the money would have to be raised to buy the equipment which would slow things down to the point of being dangerous for the children who need urgent surgeries and would also at times make some surgeries impossible if the money can’t be raised.
One of the tiny patients: April 2017 expedition
I have been very lucky with the donors I have worked with; all of them who have given their equipment in abundance and completely free of charge (including shipping; I always say I’ll pay for that and they never let me) do so with goodwill and a real desire to help. In the past we have had donations from:
This time around we were lucky enough to add a new and very generous donor to our growing list. We were already being helped on this occasion by Single Use Surgical (who had helped equip the trip made in 2016), but also had Surgical Holdings on board for this trip. Surgical Holdings are a family-run company located in Essex and quickly sent a whole load of equipment from our list.
Dr Esayas receiving some of the donations from Surgical Holdings & Single Use Surgical in Gondar (April 2017)
Approaching a new donor is always a little nerve-wracking for me. After all, I’m literally asking a company if I can have some of their products for free…I know it’s for a charity but I still get a little knot in my stomach when I ask. And I really shouldn’t because I have never received a negative or rude response. If the company are unable to help they’re always profusely apologetic and if they can help, they are so enthusiastic and supportive it makes me feel ashamed of being worried about it. Because generally, people do want to help, especially when they know more about what we’re doing.
This time I was in touch with Daniel Coole, Managing Director, who replied quickly to my email with ‘absolutely; if we have these items we’ll help. How many?’. It was as simple as that. What a kind man. Soon after, a large box arrived at my house with everything the team in Ethiopia needed. Unfortunately, actually getting the goods to Ethiopia can be a little tricky; we’re not dealing with Royal Mail and British customs here!
Inspecting the items with smiles.
Paperwork requirements keep changing, items get confiscated at customs for various reasons and never returned…it’s a bit of a gamble. And also sometimes takes a bit of to-ing and fro-ing with the donors to ensure we have the right paperwork etc (which keeps changing). It’s not the fault of the donors and can be a bit time-consuming for them which frustrates me no end; I want it to be as seamless as possible for them. However now Dick has established a new system with customs and Ethiopian Airlines so we’re hopeful that from now on the whole donation procedure will be nearly effortless for the donors.
So generally, I track down, beg for and receive the items at my home, take them personally to a volunteer flying out to join the Reach Another Team in Ethiopia and she carries them with her hand luggage. Given the vast amount I received this time around from two donors (Surgical Holdings as already mentioned and also Single Use Surgical who have donated before), I felt a bit guilty about handing them over to her; talk about heavy!!
Another of the babies ready for surgery.
I wouldn’t fancy lugging that load to Ethiopia on top of all my normal luggage. I do seem to spend rather a lot of time feeling a bit guilty doing this work; guilty for asking for free stuff, guilty for passing it on…I really must get over that! Ciara (the lovely volunteer) didn’t bat an eyelid. She was too busy being excited about the donations. And so she should have been…it was generosity on a huge scale.
Yesterday I received the first photos from the team in Ethiopia which I have shared with you here. They show one of the surgeons unpacking the items and also some of the little patients who they were used on. As we had so much equipment, the donations were sent to three different centres which was amazing; without them, these surgeries couldn’t have been performed and the babies couldn’t have been saved. So thank you Daniel Coole and everyone at Surgical Holdings, Single Use Surgical and all the other donors who have helped us in the past (and who can hopefully help us in the future). Because without you, there would be a whole lot more suffering going on.
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!
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 (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?
Where does the time go? Seriously, that is a genuine question. Anyone who has an answer, please let me know. I’ve had quite few emails from readers asking when my next post was going to be so I thought I’d better get to it. I apologise for the long absence (I think it’a been about a YEAR) and thank you all for your frequent comments and questions about the blog; I’m glad it is helping so many of you understand what it’s like to live with hydrocephalus and what to expect when facing surgeries/ICP monitoring and so on. I am absolutely going to try and write here more frequently now things have calmed down a little. Rather a lot has happened in the last few months, most of it good! At the moment I’m pretty under the weather with a horrible virus (not good) which seems to be lasting an eternity (not good) and I can’t remember the last time I felt this rough, which means my immune system must actually usually be quite effective at fending off such viruses (good).
So…update on the charity side of things! Well I’m still waiting to get my charity registration number – this process seems to take quite a long time but I believe I’m nearly there. The website is pretty much finished and ready to go; I may put a link to it at the end of this post if I’m feeling brave enough. Please bear in mind when you have a look at it that it was designed by ME. I am not, by any stretch of the imagination, a web designer. So yes, it’s basic but I hope it gets the message across about what we do. By the way, I need a good logo – I’m not even going to START trying to design that – so if anyone has had experience of getting logos designed rather cheaply (I’m paying for it so there’s a budget!) please send any suggestions this way and they’ll be very welcome!
In March this year, Reach Another Foundation flew over to the UK so we could all meet up again. Reach Another Foundation are a charity Lewis and I donated some shunts to a couple of years ago, headed by Marinus Koning; I wrote about this in an earlier blog post. Just to confuse you, although Marinus is his name, everyone who knows him well calls him ‘Dick’ and he said I could call him this. So when I talk about Dick I actually mean Marinus. Same dude. Reach Another Foundation work in Ethiopia and have done amazing work out there. I mean, seriously impressive. They work to improve access to medical treatment for hydrocephalus and spina bifida and have also opened Ethiopia’s first school dedicated to the education of autistic children. As if this wasn’t enough, they are also training neurosurgeons out there; in 2009 there was only one neurosurgeon to treat Ethiopia’s population of over eighty million. Thanks to Dick, his team and the programs they have set in place, they are on target to have twenty-five neurosurgeons by 2020.
So where do we fit in? Well, the first fantastic news is that Lewis and I have been joined by a third trustee; Greg James, consultant paediatric neurosurgeon at Great Ormond Street Children’s Hospital.
Greg James; consultant neurosurgeon and our newest trustee
This has been a great development for us because not only is Greg an amazing surgeon and a very nice guy to boot, but he and Lewis are going to fly out to Ethiopia with Reach Another Foundation to (fingers crossed) start up a training exchange. The plan (still being discussed) is to fly the trainee neurosurgeons over here to observe Lewis and Greg in theatre and learn as much about our techniques as possible (they are not permitted to actually carry out surgery here due to frankly ridiculous amounts of rules and red tape – nice one, UK). Then Lewis and Greg will fly out to Ethiopia with them later and oversee them performing (or assisting with) said techniques on the patients over there. And of course whilst they are there they will be doing a whole myriad of other things; Greg is taking over hygiene protocols recently set up in Great Ormond Street (which amazingly reduced the infection rate by a THIRD) to set up in Ethiopia – just imagine the impact it’s going to have in a place where infection is rife. And me, what do I get to do whilst the boys are out in the field, working hard? Alas, I cannot go with them as I can’t fly (head pressure issues) so I’ll have to stay at home like a good little 1950s housewife and keep things in order! I know my place. Just kidding. I have a lot to be getting on with; we have now established the shunt donation scheme and put it to the test in April with the mother of all deadlines. Whilst Reach Another Foundation were here in February (I got to meet the whole team – around ten in all which was lovely) they told us about their next trip out in May when they would need all manner of surgical equipment as they were going out to perform some overdue operations on children with spina bifida and hydrocephalus. In Ethiopia as you can imagine, they have literally nothing. I asked them to send me the list of equipment once it was finalised and I would see what I could do about getting as many items as I could for them. Well, cue three months of frantic running about. First I asked hospitals, clinics and neurosurgical centres; none of them could help (although they very much wanted to). And we can literally thank our current government for that. The cuts they have been making to the NHS means that hospitals are clinging on tooth and nail to every last bit of equipment; any items not used have to be sent straight back to the manufacturer and cannot be donated. What a change to a few years ago when I first applied for shunts. I got a ‘yes’ from the first hospital I asked. Whilst this is all very understandable from the hospitals’ perspective, for me it was a logistical headache. Just where could I get these items from? The list was long, the items were multiple and expensive and, not being a surgeon, I didn’t know what any of them were. Oh, the irony; I’ve come into direct contact with these very instruments time and time and time again, but because I’ve been flat out asleep, I’ve never seen one of them (thank God from the look of some of them to be honest). In the end, in April and just as I was about to give up (I HATE giving up), I had an appointment with Simon, my hydrocephalus advisor at Queen Square, who I’ve spent so much time with over the years that he feels like a friend and not a healthcare professional. He knows about my project and always takes a very keen interest in it. I told him of the struggle I was having (I had obviously already asked him if Queen Square could spare anything) and he suggested going straight to the manufacturers. This may seem a blatantly obvious course of action to many of you reading and I had considered this way back at the beginning, but dismissed it because to my way of thinking they would be making a direct loss by donating items that they could otherwise sell at full cost. However, Simon said (a great game) to bear in mind that even though these are businesses making products to make profit at the end of the day, they are doing so within a sector where an awful lot of goodwill exists. I had seen this first-hand with the companies who have donated shunts to us before but this list was so extensive (and expensive) that I hadn’t held out much hope from going down that path again. But Simon urged me to try. The dude is right about pretty much everything most of the time so who was I to argue? So I sent out a fleet of what can only be described as begging letters to all the manufacturers of the products I was after. And back came yes after yes after yes! In the end I had over half the list of items; some of them were simply not in stock (but are on their way to me now for Reach Another Foundation to take with them on their next trip out) and a couple of the items I found out later cost £20,000 a piece! Oops! There I was asking if they could spare eight, or ideally sixteen! I forget sometimes how much of a learning curve this all still is. Note to self: next time find out how much the items are BEFORE you start asking.
However, we had a good result and especially from Sophysa (who have donated shunts to us before and happily handed over ten full kits, instruction manuals and shunt passers) and Single Use Surgical, who donated pretty much everything else.
Just look at all those lovely donations – thousands of pounds-worth! L-R, Ciara Baxter (volunteer for Reach Another), Lewis et moi.
So in May I went to London to meet Ciara, a volunteer for Reach Another Foundation who I had met a couple of years earlier when we sent the first donated batch of shunts out to Ethiopia with her. I met her in London, took all the equipment up with me and we met with Lewis in his office to do the official hand-over and to take some photos as well, to thank the companies who had donated. Greg unfortunately couldn’t make it (trying to get all of our schedules to coincide is usually impossible) but we got some good photos done. I felt a bit bad that we’d had to leave Greg off the photo and Lewis suggested Photoshopping him in. No doubt as a joke but I immediately saw a fun challenge there (I have no idea how to use Photoshop) and tried to stick him into our photo.
As if by magic, Greg appeared.
Which kind of worked, only I’m slightly turned away from him and he’s off to the side a bit so it looks like the three of us are trying to edge him out of the group! So that photo will not be sent to anyone because edge him out we will never do. And so off to Ethiopia the donated items went! Dick contacted me to say that the donations (needless to say) had been a hit and the surgeon receiving them had been moved to tears. Incidentally, the surgeon is Dr Yordanos who is Ethiopia’s first and only female neurosurgeon. They are starting up a hydrocephalus program over there so Dick is going to let me know about it as soon as we can Skype and hopefully we’ll be able to help with that in some way. The donation programme is ongoing and is not limited to shunts only; all neurosurgical equipment and also general surgical items are being received. I’ve just had notification of a lot of surgical masks which I’m following up and we now have some Penfield dissectors (neurosurgical stuff) on their way. Currently I am getting a database of participating hospitals/clinics and manufacturers together to make all this run a bit more smoothly. And looking into storage space too!!
The other thing I’ve been working on regarding the charity is our shunt symptoms/diagnosis tools to send out to new parents and parents-to-be in more rural areas. I have now legally acquired design rights so I can safely reveal it; we have opted to use line drawings rather than photos shown but this gives an idea of how the design works. The symptoms show ‘good’ symptoms on one side and ‘bad’ hydrocephalus symptoms on the other. We have not used words as literacy levels in developing areas vary greatly so thought it best to use visuals only; then we can send it out to any area and be sure that the recipients will be able to use it properly. On the reverse-side of the card will be photos showing parents how to use the attached, specially-modified tape measure (which Lewis and Greg are in charge of) and then images showing to seek help if the tape measure reveals a too-large head circumference. We may need to include a chart on the reverse-side of the card too but will finalise this later. The tape measures will be attached to each card in a way which means removal is near impossible, so they cannot get lost. The symptoms card itself can also be blown up to poster-size so it can also be displayed in waiting rooms in hospitals and health clinics. I am hoping to get the tape measure design finished by the end of the year and then after we’ve tested it extensively at Great Ormond Street, we’ll be ready to go into production. We have a charity in Vietnam (Helping Orphans Worldwide) who have said they’ll happily do the first distribution for us and who also have offered to help with the printing and production side of things. Just how we’re going to get these out to the rural areas (where late presentation is one of the main causes of terminal hydrocephalus) I haven’t worked out yet but we’ll cross that bridge when we come to it. Fundraising galore I think is going to be the answer! Hydrocephalus is going to happen but if we can educate parents in what to look for, to assess their own child and act quickly if their child is displaying worrying symptoms, this could really help to get children treated rather than it being too late and leading to a terminal diagnosis.
So that’s what we’ve been up to recently. I have to shoo off for now but will update with more hydrocephalus-related info soon. I’ve received ever such a lot of emails from you all with more questions about all manner of things so I think I’ll compile those into a new Q & A post. Which I promise to do SOON. Not in a year.
**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’!
You 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!
‘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!
‘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!