I'm 53 years old and a month post surgery to replace an infected VP shunt and replace it with a new one on the other side of my head.
My hydrocephalus was diagnosed at six weeks and I have had four revisions of the original to date. Just four revisions and a fabulous life, full of adventure, wonderful people and experiences...I am very lucky and NEVER forget that.
Sitting here, still unable to get the post op sleep I desperately need, I could slip into self pity...but I don't. I was hospitalised along with many with far more devastating conditions and prognoses. I have the best partner anyone could wish for and I am hopeful that, given time, I'll be firing on all cylinders again soon.
I am so fortunate that the effects of my hydrocephalus have not prevented me from completing study to degree level, playing sport to a decent standard and working to pay the bills. Yes, I have played the 'make the most of life' card to do some thrill seeking and travelling to all corners of the world, but I am fortunate to have been able to do that, a fact, not an apology.
My view has always been that my condition is only a very small part of who I am and what I am about. At times like now, where it is pushed to the forefront of life, my determination is to see that as temporary. I may be frustrated by post op infection, fatigue and employer attitude, but, at the risk of repeating myself, I am lucky to have these as my primary concerns when so many suffer badly.
A positive outlook can only take you so far, of course, but within the confines of your own individual situation, I believe it can make a huge difference. I have never seen myself as a victim, that's not my way and that gives me the strength to stand up for myself, when I feel a little compassion, understanding or respect wouldn't go amiss, if I feel it is lacking.
Because when everything's working, my controlled condition is invisible, issues like general fatigue are hard for employers and sometimes even family and friends to grasp. I don't blame anyone for this, however, that would be pointless.
I do admit to feeling guilty about the effect my current situation has on those who show me nothing but love. Traipsing back and forth daily in the midst of, or at the end of an 11 hour working day. Dealing with my inability to sleep but contradictory fatigue. Yes, I feel guilty, but so lucky to have the support of someone, when I'm such a difficult person to live with...even when well.
Striving to remain positive helps to put setbacks into perspective. It doesn't stop them from being setbacks, especially those some may struggle to see as relevant, but sometimes you need harsh words from those who know you better then anyone to help you to stay out of the victim mentality I do not wish to hold.
I can only claim an expertise on me and how what is happening to me makes me feel. I would not presume to be able to do the same for anyone else. This said, I make no apologies for offering my slant on things, just as I wouldn't take offence at anyone thinking my view was ill- judged, selfish or delusional.
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Froggiefrog
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Yea maybe your brain damage isn't like mine...so glad your "positivity" has allowed you to continue to do things you enjoy. I have been positively positive in pushing myself for the last eight months and my brain is still burying me. I was told I have to stop bending up and down today!! ...!!
Yea...I'll keep striving to stay positive cause maybe I'll wake up tomorrow and my positivity will have fixed me. *Insert whatever emoji you think is relevant here*!
Of course, trying to be positive isn't easy and some things will happen regardless of how we approach them, that's fact. We are all individuals and face battles personal to ourselves alone too. I suppose, I'm talking about the things where how you approach them COULD make a difference, such as your mindset after a rude reminder of a condition rearing it's head and trying to see past how you feel and look at the goal of recovery. Both sides of head ache, my wounds are in poor condition, but I can concentrate for a few minutes longer than yesterday, retain the odd thing in my short term memory, as opposed to nothing and I strive harder to focus on the former, rather than the latter. I'll always be clumsy, forgetful and the rest, but that's me being me, together with the good bits and that is where I'm aiming to get back to.
hi Froggiefrog. Thanks so much for your post. I completely agree with all you say and have a very similar outlook myself. I'm 46 and also consider myself extremely lucky, having had 4 Shunt revisions in 31 years. I have other medical issues too, but fortunately neither they nor my Shunt give me much issue in my daily life. I thank my lucky stars every day because I know that others here are not so fortunate. Like you I am a great believer in the power of positive thinking and feel that being a naturally positive person has helped me both come to terms with all this and accept it as part of me. On initial diagnosis I did go through a 'why me?' phase, but that has long since gone. I try to take each day as it comes and be grateful for what I have. After all, you cannot go back to a time gone by even if you wish for it. The hardest bit for me is accepting my physical limitations and also attempting to educate others about the effects of BI.
Your reply is a reminder that the way I see things is not unique, although it would not be a problem to me if it was, as it is my way and I've done pretty well with it. Educating others is such a wide topic, but I know what you mean. On the one hand, I have the ' when well, it's only the fatigue and memory issues' message to try to press home, but also the message that when not well it's not just a case of a week in bed and you'll be right as rain to get the likes of employers to grasp.
There are times when I feel that trying to positive can work against you, in terms of people's perception of how you are feeling, but I believe that people's ignorance should not be a reason to change my mindset, or conform to a victim mentality of health conditions or recovery from major surgery.
Accepting your own limitations is something we all have to wrestle with in our own way. At the moment, I', just back from having my stitches out from my second op, but tomorrow, I may feel like walking a few minutes longer than today and if I do, I will.
Naturally, in environments like these, I have to be careful, as some see my striving to say positive as some kind of criticism of those who feel unable to do the same. I do hope people understand that I am only ever saying this attitude seems to work for me and I share it purely to touch those who feel a similar way, or to demonstrate that aside from what makes us similar, in terms of medicine, we are all individuals and whatever way you find to make a tough ride easier is right if it feels right to you.
It’s a shame we don’t have a pill called positivities, as I am sure everyone would be at the doctors begging for one. Your positive attitude is fantastic and I am sure will help many people who are suffering from brain injury to always remember that been positive is the first stage of the beginning of recovery. I say first as there are many stages of recovery, I believe it’s like climbing a ladder one step up, maybe two then down and then up and eventually after time we find the balance. Take care and keep positive Love Liz x🌹
OOOOzing positivity. Quick question, have you always been positive through your experiences, have you suffered depression also?
I have not suffered with depression in a clinical sense ever. I'm human, so I have had the 'why me?' moments and regret about lack of understanding in some quarters, but luckily I have overcome any frustration at my situation, not least because I know how lucky I have been, in comparison with others.
I have a poor memory, even more so at the moment, but I have lived with that for many years, so have developed coping strategies. ( Some more sophisticated than leaving a note in my shoes at night reminding me what I have to remember in the morning, but not all!)
I'm not big on fine motor skills, so handyman I am not, but I am co-ordinated enough to have played sport to a decent standard and at least I'll never be a danger to myself and others fixing fiddly electrics etc...so that's a bonus!
Hi, yep I need to come up with a good memory system. My interest in your post was purely positivity. Forgive me but it seemed to me 'surface positivity', how you affected others. I was wondering to what extent the 'positivity' has infused into your psyche. How it got into your 'psyche' or if your 'psyche' was where the positivity came from.
I know this may sound a bit weird, allow me a little leaway here. Did you, or do you experience 'the loss of the self' the 'I'll never be the same'. Many people on this portal describe this and seem to mourn the loss of the 'old self'. I have and still feel the separation of the 'time before' and the present representation of the self.
Another strange question, did you have a psychadelic component to your condition?
I think my outlook has always had 'bloody mindedness' at it's core. Certainly, I was brought up by my parents to see my hydrocephalus, VP shunt and necessary medical intervention etc as just a part of who I am, not to define me. I am forever thankful for that.
My view of my own identity has always been fluid. Whether that's because of, or despite everything, I've never been sure. Thrill seeker, adventurer, stubbornly determined, 'life's what you make it' attitude. They could either be the cause of my desire to remain positive, or the effects of it, I suppose. Because of the above, the issue of 'never being the same' is not a battle I have had to face, but it is one I appreciate any who do could find very difficult. I have never NOT had hydrocephalus or a shunt, but mentally, my attitude to life when I need surgery has always been to re-enforce my determination to make the most of it, physical limitations of being out of surgery aside.
I would like to say I wouldn't find any question 'weird', as I see that a judgemental. Your question about a psychedelic component clearly means enough to you to pose it after all. As a creative individual, my mind often prone to heading in unexpected tangents, although post op morphine was the contributing factor to the only experience I could say fits your psychedelic description. ( This is not a flippant response, just an honest one, by the way.)
I am fortunate, in terms of memory, that my current struggles with it are in the context of it being, at best, poor, on a day to day fit and well basis. The strategies I used to get me through my degree final exams in 1997, for example, would not be found in any book or championed by any expert, but they worked for me and are a source of sense of achievement that underpins what some may think an over-emphasis on trying to be positive.
Positivity isn't something I confuse with being foolhardy. I take risks sometimes, but they are considered risks, weighing up the benefits against the pitfalls. I don't always get it right, but then show me someone who does!
I hope my response comes over as honestly and respectfully as it is intended to do.
You come across very well. I have just written a post about visual weirdness. It's part of my journey. I did a degree years ago in biochemistry just because I wanted to know what life is. I worked as a molecular biologist and diagnostic chemist for a while. I realised that I only wanted the knowledge and not a career and quit, life is far more interesting than work. This brain injury has led me to other fields of thought, more to do with consciousness and what is reality. For instance I have learned that our whole self outside of pure consciousness is programmed by experience via our senses.
I am learning so much, I find having a brain injury fascinating.
Another question for you, how many senses do humans have?
I suppose the answer to your question depends if you're science or parascience influenced! ( 5? 6? 7?) I know what you mean about study. I did two years of a three year nursing qualification before I decided I wanted to do something else. My degree was in Communication Studies, a mix of linguistics, sociology, psychology and media. Don't regret doing it for a minute, but it wasn't really relevant to the work I have done since.
Work is a means to an end for me. something I unashamedly do not hide. I people do not get that this doesn't mean I can't be good at what I do, that's their failing not mine, although most get it and my honesty about what work means to me.
When it comes to what people believe, or believe in, my philosophy is clear. I am happy for people to believe in whatever they wish...up to, but not including the point where they try to suggest I should do as they do, or that they are more enlightened than me and that I am incapable of making my own mind up. Arrogance like that DOES make me angry, however 'worthy' someone feels they are.
Your ladder analogy is spot on here, currently! Anyone who knows me will tell you that I tell it how I see it.That is a part of my personality that extends far beyond a diagnosis, surgery or health too. Everyone's experience is unique to them, but if my resolve to strive for positivity benefits me, as I believe it does, then I am unapologetic about it. There are those who may find that their own situation makes thinking positively impossible, At no point would I dismiss this, as I am not privy to a stranger's situation, mental well being or whatever else they have to deal with. My point is and always will be that if you ARE lucky enough to be able to retain a positive mindset, it is a very valuable asset and a useful weapon against the setbacks of, in my case, post surgery issues and coping with them as a 53 year old, rather than someone younger. (I'm still 18 in my head, like most men, after all!)
I was out of it for a while and after nearly a year they decided to put a shunt in, I used to think I was in a cafe with my Daughter, and I'd say my treat pass my bag up. She would tell me "Mum you haven't got a bag here" I 'd tell her to stop mucking about she told me all this after having permanent shunt fitted, saw my dogs and hubby it was great to be back in world of the living ...I just remember cooking hubby a curry and I passed out. Life is good and we are survivors so I sing a lot of pub songs my Family taught me some rude some not . But remember life is good and the family are important to us at times like this. No stress is a good thing I was told ..So good Luck to you and good luck...My OT's didn't mention a shunt they said put her in a home as I'll never be the same..But I am back walking 600 yards until back aches ..but it is all plus things. Good luck x Keep going forward x Darn it I knew I shouldn't have called OT's witches lol
Thank you for your kind wishes. No stress definitely sounds like a plan, although the effect my post op issues are having on my partner and the associated guilt is my main gripe. I will deal with it!
I come on 2 sites this one and behind the grey and if I want to moan they let me let off steam ..so good luck ..Mind I still sometimes moan at family on down days lol
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Husband now needs shunt operation for hydrocephalus 
