Borderline Personality Disorder
---It's not me, it's my illness--- In my earlier days on review writing sites I wrote a review about depression. In my earlier days I thought that my primary problem was depression. Countless trips to the doctors and mental health professionals over the years...complaining of being depressed and not really knowing what the problem ... or cause was...having no idea WHY I was feeling how I felt - it was a scary and confusing place to be. But while I was often depressed, my moods have always been all over the place - somewhat like a teenager who never grew up.
I'm not retracting my depression review - it's one of my best pieces. And it's not inaccurate as such - I am affected by depression, just in a different way. But in reality, depression wasn't THE problem, nor was the alcohol abuse or self-harm - they were symptoms of my illness - Borderline Personality Disorder, or BPD.
This is possibly going to be the hardest review (and of epic proportions of course) that I'll ever write, but also the easiest since it's all about me - my favourite and least favourite subject. In writing this I hope that it will help people understand a bit more what it feels like to be me - and if it helps just one person who is struggling, and perhaps offer some hope, then it will be worth it. Besides, writing about it helps me too...
This review is focused on my personal experiences of BPD. I'm not fishing for sympathy (although if you want to give me sympathy, that's fine!), I'm just telling it how it is - as I always do.
I have spent YEARS hiding behind a mask. It wasn't a conscious decision to wear it - self-preservation I guess. And my marriage with my ex was a mask - it was like a sticky plaster...it kept the worst of it in, but when it (the marriage) ended, it was ripped off, and it all came out, and the BPD was brought to a head.
Now the mask is off. And while it's liberating - without the mask I CAN see more clearly. At the same time it's ABSOLUTELY terrifying - without the mask I'm completely naked, and have no protection from the elements. Sometimes I try to put the mask back on...DESPERATELY. Sometimes I manage to. But it's increasingly difficult...and facing BPD head-on will probably be the scariest and hardest thing that I will ever do - but the most rewarding too. And although at times it does feel like there's no light at the end of the tunnel - that doesn't mean that there isn't a light there.
Sometimes you have to go backwards to go forwards - or down to go up.
In a recent counselling session I suggested that my life felt like a frustrating game of Monopoly - going round and round in circles. But my counsellor suggested that it was more like a game of Snakes and Ladders. And I like that metaphor. And the psychotherapist (who I'm on an 18 month waiting list to see) will LOVE that metaphor when I serve it up to her on my metaphorical plate.
---What is BPD?---
Some people don't like the term BPD. I do tend to prefer the term Emotionally Unstable Personality Disorder which seems to have become more popular and my actual diagnosis is "Emotionally Unstable Personality Disorder - Borderline Type", given to me by my nice ex-psychiatrist who also told me I was glamorous and narcissistic, before abandoning me (I couldn't resist mentioning that - seriously though, he was very good, and refreshingly receptive, and we had a good old chat about Freud). But it's easier to call it BPD. It's called 'Borderline' as it was originally seen as being on the borderline between neurosis and psychosis, and it seems to occur as a result of a combination of environmental and biological factors. The facts can be found by Googling it - I will just touch on the main ones.
---Me and BPD---
Recently I've taken to telling people that I have a personality disorder just to see what their reaction is, half expecting them to run in fear and lock their bunnies away safely so that I don't boil them (such is one of many unhelpful stereotypes of personality disorders, deriving from the character played by Glen Close in "Fatal Attraction"), and perhaps on some levels wanting to elicit a shock reaction and leave them thinking "Yes, Mary really is completely mad".
However, overwhelmingly the layperson's response (that I have encountered) is the same - "Don't we all?!" Perhaps they are right on some levels, after all we all have a personality and we all have disordered aspects of our personalities, or behaviours that we struggle with. However, that takes away from the fact that (in my opinion) personality disorders ARE real and those affected suffer very real emotional distress and face problems as a direct result of their illness. It is suggested that about 10% of the population have a personality disorder, and 2% of the population with BPD. 75% of those diagnosed with BPD are women.
--Personality Disorders, and BPD Diagnostic Criteria---
There are different types of personality disorder, essentially in three clusters (although many people will have more than one personality disorder):
Cluster A: Suspicious - paranoid personality disorder, schizoid personality disorder, schizotypal personality disorder
Cluster B: Emotional and impulsive - anti-social personality disorder, borderline personality disorder, histrionic personality disorder, narcissistic personality disorder
Cluster C: Anxious - avoidant personality disorder, dependent personality disorder, obsessive compulsive personality disorder
I'm not an authority on personality disorders (although intend to be one day - in fact I will soon be being trained by the NHS to deliver training about personality disorders), and can only really talk about BPD - from my personal experience.
I've taken this from - http://en.wikipedia.org/wiki/Borderline_personality_disorder - criteria do vary a bit (and depending on whether you go with BPD or Emotionally Unstable Personality Disorder), but the general gist is the same.
"A pervasive pattern of instability of interpersonal relationships, self-image and affects, as well as marked impulsivity, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-injuring behavior covered in Criterion 5
- Yes - I am terrified of being abandoned...especially by my substitute mother - I repeatedly need her to reassure me that she isn't going to abandon me. My abandonment issues run deep (some of this is an understandable result of my life experiences, but some of it is completely irrational)...and issues of attachment and abandonment could be a whole review in itself.
2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
- Yes - I tend to either love people or I hate them (technical term is 'splitting' - or both. Probably most evident with the relationship I have with myself. I suppose I might be slightly unusual in BPD terms. The people who I love the most, I won't NORMALLY let them know that I hate them...as I KNOW they'd abandon me if I did. However I do frequently accuse them of hating me - mainly because I need the reassurance that they don't. I know that hate is such a strong word, and for the most part should be avoided - but the hate I feel, feels very real to me.
3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
- Yes - I have no idea who I am really (mind you, I know that many people feel the same!) But really it's the instability - sometimes I love myself, other times I detest myself. There is not much in-between - what I'd like more than anything is to 'like' myself.
4. Impulsivity in at least two areas that are potentially self-damaging (e.g., promiscuous sex, eating disorders, binge eating, substance abuse, reckless driving). Note: Do not include suicidal or self-injuring behaviour covered in Criterion 5
- Yes - alcohol abuse, very disordered eating patterns at times (bulimic tendencies), ...reckless driving is kind of impossible for me due to my driving phobia...however I did threaten to drive one of my driving examiners into a tree...and now I look back on my past with the insight I have now, I can see that my issues with driving are as a result of the BPD - quite frankly I am a liability.
5. Recurrent suicidal behaviour, gestures, threats or self-injuring behaviour such as cutting, interfering with the healing of scars (excoriation) or picking at oneself.
- Yes yes yes - self-harm, suicide threats, overdoses... incidentally BPD is the only mental disorder with self-harming behaviour as one of the core diagnostic criteria- traditionally seems that many have been inappropriately diagnosed with BPD based solely upon self-harm - obviously this is unhelpful
6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).
- At the end of the day, it's the mood swings which have always been my biggest issue. I can be suicidal one minute and happy as Larry the next. It's very upsetting though...although I know all of this on a rational level, in the moments I am feeling suicidal, I am completely convinced that that is that - that I will NEVER be happy EVER again. In the moment it feels all too real. And when I'm feeling happy I feel like nothing will ever ruin my good mood. But it does, and it can change from good to bad so quickly.
7. Chronic feelings of emptiness
8. Inappropriate anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
- I don't think that this one REALLY applies to me, although I do tend to fly off the handle, throw temper tantrums (which I actually didn't really do as a child). But I am certainly not a violent person (aside from to myself). So I suppose it partly applies, partly doesn't.
9. Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms
- Yes, as I will touch on in a bit. "
So I've satisfied myself and the mental health professionals that I do have BPD. Now what?
It hit me last week that I was sure that when I was first diagnosed (June 2010) that I didn't meet nearly as many of the criteria as I do today. That perhaps I am trying to make myself fit into the diagnosis. But really, it's possibly more due to self-awareness and understanding. Although self-awareness is a good thing, with self-awareness comes fear. And I have to say that it is infuriating that I know all of the theory, I KNOW what my unhelpful behaviours are - but I have no idea how to stop them, and I can't 'cure' myself. I'm aware that I think very much in Black and White terms...and while on a rational level I KNOW that there are grey areas...but the way I FEEL, I can't see them.
BPD has many different combinations, so everyone's experiences of the illness will be very different. And although I have a fair few friends with the diagnosis, and we do share a lot of similar thoughts and similar experiences, we are all different.
---A negative term/a misdiagnosis?--
Although I'm resigned to the fact that I'll never be allowed to join the police force or army, and could probably never serve on a jury (much as I would LOVE to)...on the whole I'm 'happy' with my diagnosis. To ME it makes SENSE.
Some feel that it should be reframed as a complex Post-Traumatic Stress Disorder (PTSD), and while this might be appropriate for some, for me I don't think that it is. I have not experienced a childhood trauma or abuse - don't get me wrong, there ARE major issues from my childhood which I'm just coming to understand now, but this isn't the place to share them, and I don't think it would be fair to do so. However, I think that's what I will need to do the work on in therapy).
I truly believe that things are changing. Understanding of mental health problems in general is improving, and the treatment of those who have BPD and/or self-harm is improving (of course this is a gradual change, and I'm aware that many people do sadly still have negative experiences with healthcare professionals). My basis for this belief is my own, and the experiences of people who I have spoken to who self-harm and have the diagnosis of BPD.
---Looking at BPD in a positive way---
Personally I choose to look as my diagnosis as a positive thing rather than something to be ashamed or scared of - by establishing what the problem is, I can work on sorting it out (and quite frankly for me, there IS a problem. In some ways it feels quite validating. I understand that the label 'personality disorder' does carry with it negative connotations, and the idea of someone's personality being fundamentally flawed.
However, I found the following (taken from "The Borderline Personality Disorder Survival Guide", by Alexander Chapman and Kim Gratz) quotation useful when trying to make sense of things myself;
"So, having BPD does not mean that you have a flawed personality, or that you will always struggle with the problems you are having right now. It simply means that you have a pattern of thinking, feeling, and behaving that may be hindering your ability to have a high quality of life, keep your relationships going strong, or reach your goals." (p.14)
---Treatment for BPD---
It sounds a bit dramatic to say that getting the diagnosis has changed my life, after all I had suspected it for years. However, in some ways it has. The NICE Clinical Guidelines for BPD promote talking therapies over medications, however there is a need for further research.
I have founded it helpful taking Lamotrigine as a mood stabiliser (having researched every drug under the sun, this is the one I chose - the only side effect is a potentially life threatening skin rash - which I didn't get) in addition to the Mirtazapine I was already taking for the associated depression. And, while it's not a cure it has helped.
The diagnosis has meant that I now have more support from the NHS, having a CPN who is amazing, and being on the waiting list for psychotherapy. I don't see BPD as being "untreatable" I see the diagnosis as being an avenue into receiving the appropriate treatment (and talking therapies do have the best outcomes for BPD). It could of course just be that I've been exceptionally lucky with my experiences, if having BPD can be considered in any way lucky.
A friend of mine says that she tries to separate the behaviour from the person, and makes allowances for my often negative behaviours, based on my illness. This is helpful to an extent in that I don't end up hating myself even more (and self-hatred is a feature of BPD), and it is helping me to become more self-aware and gradually hopefully will learn to change. In some ways I'm acting more like a child at times now than I did as a child. However, I do recognise that I am an adult and in an adult-world - and that is scary. Illness or no illness I AM responsible for my behaviour (positive or negative) even if I don't feel in control of my behaviour at times. It's a learning curve really for me, and for those who care about me, without whose support I almost certainly wouldn't still be here (I think it's important to consider also the impact that BPD can have on family and friends).
Another friend suggested I get a T-shirt printed which says "It's not me, it's my illness" and I did, however it's more a joke than anything (and me mocking myself really). I don't want my illness to take over my life, and it's not something that I intend to have forever. One day I want a T-shirt which says "It IS me, I don't have an illness anymore."
It's essentially stress which exacerbates my 'illness' - in fact I have come to the realisation that I simply cannot cope with stress. When faced with stress I tend to become a bit detached from reality. At the time I feel completely rational - but when I can look back, I realise that at these times it really WASN'T me, it WAS my illness. I can see though why it happens - it's a defence mechanism...and the 'autopilot' mode (which I spent a great deal of last year in) is essential as it protects me from experiencing such raw emotions which I simply cannot deal with. Obviously though, in time, and with treatment I will have to, in a controlled manner.
I've recently started a new job, and it is essentially my dream job - sharing my personal experiences in a professional capacity (about self-harm mainly, but will probably increasingly be touching on the BPD)! It is what I was destined to do (and in that sense BPD and self-harm were the best things that ever happened to me). Although it's my dream job, it does raise some issues, and my relationships with my colleagues is about as complicated as it can get. And we have had a few 'incidents' (as I like to call them).
I have been reading "Borderline Personality Disorder for Dummies", and it advises against informing colleagues about a BPD diagnosis. Obviously in the nature of my current work that wouldn't be possible anyway, but really, I have no idea how someone could keep it a secret. In my previous jobs I've been upfront and honest about my mental health problems (of course I didn't have the BPD diagnosis at the time). I've never used it as an excuse though. And if my behaviour is ever inappropriate (and it often is) I will always apologise sincerely. I am very much of the opinion that either people accept me, or they don't, and there's no way that I would be able to hide it anyway.
---Writing about BPD---
Not an excuse, but an explanation - this is what I wrote last week following the week 7 'incident'...very much off the cuff, without thinking about what I was writing:
BPD is standing a metre away from me - watching me. Hearing me speak, feeling the words coming out of my mouth, but being powerless to stop them.
BPD is watching my life as a spectator. The auto-biography which writes itself. With ME as the lead role in the screenplay. Exciting - not knowing what she/me might do next. Terrifying - not knowing what she/me might do next. As the reader I know that I want a happy ending. As the writer I know what I want to write, but I don't know if she will let me.
I love her. I drag her out of bed, I shower her, I put her makeup on. I feed her - if she deserves it. I give her cheap wine and vodka. I attack her with a razor blade - WHEN she deserves it. And she does. Because when we come down to it, she's a worthless piece of shit. I HATE her. She deserves to die.
But she's not a nasty person. She bakes cakes, she sends cards - like her mother. She'll do anything you ask her to. But if you don't say 'Thank You', she'll HATE you. She just wants to feel loved.
BPD is wearing a hat which says "I want to die". Scrap that, it's wearing a HUGE sign on my head which says "LOOK at ME. I FUCKING want to KILL myself. Why the FUCK can't you see that? I'm SCREAMING 'HELP ME', but you can't hear".
No one listened to me then. Why would anyone listen to me now?
It'll teach them ALL a lesson if I kill myself. They deserve it. She deserves it. But no, they don't deserve it. She doesn't deserve it. She loves them. She hates them. She loves herself. She hates herself.
Get a fucking grip Mary. Stop being so fucking pathetic. Get over yourself, you stupid little bitch. Stop acting like a fucking child.
But she feels like a child. She is scared.
She is terrified, living with this BPD creature who is out to kill her - one way or another. But she doesn't know how to stop her.
She doesn't know which bit is her, where she finishes and the 'illness' starts. Where the 'illness' starts and she ends.
Please don't give up on her, she doesn't want to die. She doesn't want to hurt herself. She just wants to be happy. I don't want to hate myself.
---Am I making this all up for attention?---
I have to admit, I DO like the attention that the illness gives me. I feel a bizarre sense of pride having well and truly made my way into the mental health system. It took me so many years and so many appointments to get there. And although I say it in a joking manner that now I'm 'in' the system I NEVER want to leave...well, it's partly true...and of course not forgetting the fact that I want to be the BEST psychiatric patient in the world EVER!
It's difficult to explain. But really, having the 'illness', and being 'in the system' gives some legitimacy to the feelings I've had, really for my whole life. For the first time I'm REALLY being listened to, even if at times it still feels like no one is listening.
Sometimes I question myself, and I question the professionals involved in my care - "Am I just making this up for attention?" As a Sociologist I wonder sometimes if I'm doing this all as some sort of social experiment. Participant Observation is a fascinating research method...and I really feel I'm participating...but paradoxically with a kind of detached nature - as an observer of my own life and not REALLY participating.
But then I catch myself, and say "Why on earth would I do that?" - I am a brutally honest person, besides I'm a hopeless actor. There is No WAY on earth that I could make this up...it's far too elaborate.
A couple of months ago the stress of impending redundancy and the fear of change (and my increasingly disordered eating patterns) looked set to send me over the edge (and when I look back, I was in a similar state in the build up to my wedding). In fact it did send me over the edge. Following a drunken night out with awful consequences (which will make an excellent chapter in the autobiography, but isn't appropriate to post here now), a few days later I presented myself at an emergency appointment with my CPN, declaring:
"I'm on the verge of mental collapse. My friends think I need professional help. You're the professional - HELP!"
Despite my imminent mental collapse, I still had to go into work to deliver a farewell speech for some colleagues. Despite everything, I'm a fiercely loyal person, and will ALWAYS stay true to my word - if I say I'll do something, I will bloody well do it, even if it kills me. Loyalty or stupidity - I'm not sure.
I ended up having a lovely stay in a Crisis House (really! I was aware I might've been enjoying it a bit too much). Since I pay my taxes, I'm happy to accept all that the NHS has to offer me. It was an experience, and one which without the BPD I'd never have had the pleasure of. I was confused at times as to whether I was a member of staff (made more complicated by the fact that I'd delivered self-harm awareness training to many of the staff members) or a patient. I don't intend to ever go back there, but it's reassuring knowing that it is there, as an alternative to hospital - thankfully I've never been on a psych ward, it really wouldn't be the right place for me.
I sometimes worry that if my 'illness' was taken away, that I wouldn't be ME anymore. I hate myself, but I love myself too...and I'm attached to myself. I have to be, we live together - me and my illness - against the world.
My advice can only really come from my personal experience - 'better' advice can be obtained from the sources in the recommended reading section at the end of this review.I would say to those who are affected by BPD (I prefer saying that to 'suffering'), or think that they might be:
* Read up about BPD - particularly about treatment options
* If you do think you might have BPD, remember that only a psychiatrist can diagnose
* Depending on what life plans you have, you should think carefully about what might end up on your medical records - that said though, recovering from the illness has to be the priority - having the BPD diagnosis might have some negative consequences - so be aware of this
* You can only face it when you're ready to - don't try and do too much at once - you'll only be setting yourself up for failure.
* Remember that it's VERY difficult for other people to understand
* Accept any help that is offered - the chances are that you can't get through this on your own
* When you behave inappropriately, recognise that you've behaved inappropriately, and apologise - but don't be surprised if your apologies aren't always accepted - remember that BPD can be very frustrating for those who care about us
* Try not to push people away
* At times of feeling ok, let people know what they can say/do to help when you're not feeling ok
* The illness isn't your 'fault' or anyone else's 'fault' - it is what it is - harsh as it sounds - deal with it
* Be patient - you won't 'recover' overnight, and there will be setbacks
I told a friend I was going to write a review about BPD, and she asked me if I'd give it the lowest rating.I would love to give it 1 out of 5 (bearing in mind that 0 isn't an option), but I'd also love to give it 5 out of 5.
1 for the excruciating lows.
5 for the happy almost manic highs.
I don't DO middle ground - such is the nature of the illness. I know on a rational level that there IS a middle ground. But the way I FEEL, it is ALL or NOTHING.
I will break the habit for this review, and give BPD a balanced 3 out of 5 stars. Really I would give ANYTHING not to experience the sheer hell of suicidal thoughts, the impulsivity, the destructive behaviours which could (and still might) end up killing me. My impulsivity and lack of control terrify me at times.
But without it, I wouldn't be where I am now. In a warped kind of a way I think it has been the BPD which has got me through the hardest times. Even at my absolute lowest I've quickly bounced back. Even in the worst possible times of my life...I can honestly say that I have never had a day where I haven't smiled at least once. The illness has also directly led to me making some amazing friends. Besides, I LOVE drama, and BPD certainly creates drama.
I know that I have said this already, but to reaffirm - I would never want to use my 'illness' as an 'excuse'. I am an adult, and I am responsible for my actions, even if I'm not in control at times. However, as a friend pointed out (and again I have already said this), it isn't an excuse, it's an explanation.
The game of snakes and ladders is a frustrating one. My friends and I used to go to a pub quiz, and the vile chain-smoking quizmaster asked the question:
"In a game of snakes and ladders, you go up the snakes and down the ladders - true or false? It's quite simple when you think about it!"
But it's not that simple really. And going deeper into the metaphor - Snakes and Ladders IS a game of chance, and you DO have to take what is thrown at you - good and bad. However, with perseverance, you WILL get to 100, regardless of whether you 'win' or not.
Although they say that for most people BPD symptoms do ease over time as people get older, I know that I can't do it on my own.
So long as it doesn't kill me (statistics say that 10% of those with BPD end their lives - I hope I will be one of the 90%), one day I won't have an illness anymore - and it won't be scary, as I won't need the illness to hide behind. I will just be me - Marymoose. And that will be ok. A friend has said that my 'filters' work differently to other peoples (and I might have to get an "I have faulty filters" T-shirt printed)...and I quite like that - filters do get clogged up, but they can be changed.
I might update this review when I no longer have BPD. But more importantly I can promise you that when I am 'cured', that is when my autobiography will be written - I love a book with a happy ending - and I am mostly confident there will be one. That said though, I'm not delusional, I recognise that there will be many more lows to come, and that a 'recovery' will probably take at least several years. But I am on the right path. Bear with me...and thank you for sharing my journey with me.
---Recommended reading--- (take out gaps in the links)
www.mind.org.uk/ help/diagnoses_and_conditions/ borderline_personality_disorder - Includes information on how family/friends can help those with BPD
At one point last year a GP asked me if I'd considered Bipolar - like it's some sort of choice! - http://bpd.about.com/ od/relatedconditions/a/ BPDVBipolar.htm - this is a good article which goes some way in explaining the differences between BPD and Bipolar.
BPD - NICE Clinical Guidelines - http://www.nice.org.uk/CG78
The Borderline Personality Disorder Survival Guide" - Alexander Chapman and Kim Gratz
Borderline Personality Disorder for Dummies - Charles Elliott and Laura Smith
Borderline Personality Disorder Demystified - Robert Friedel
Get me out of here: my recovery from Borderline Personality Disorder - Rachel Reiland (I've written a review of this)
Read the complete review
My Experience of Testicular Cancer
I always thought I was going to live forever - I'm thirty-three but feel the same as I did when I was eighteen, and I've got through a relatively hard-drinking, hard-smoking lifestyle without any troubles to this point. I was a bit suspicious of my balls, though, because I had an operation when I was five years old to bring ... them down into my scrotum - undescended testicles, I believe the term is.
Therefore I was straight on the case when I felt a lump on my right testicle about two months ago while taking a piss. I always take those hands-on moments as an opportunity to check things out, and found a marble-like protrusion sticking out of my right nut.
I gave it a day or two, just to see, while also working myself up into a panic about testicular cancer, and all the things that might involve.
I wasn't hanging around, though - unlike some guys, I don't have any pride when it comes to these kind of things. I got myself an appointment to get it checked out.
However, I live in the Czech Republic, and a visit to the doctors is not the easiest thing for someone who doesn't speak fluent Czech. The urologist I visited was a man who looked like he smoked in his office, and we communicated through a combination of mime and shouting.
He originally treated it as an infection, and put me on antibiotics, which did nothing at all. On my third visit, after many facial expressions which you might make watching skateboarders fall on their face during "You've Been Framed", he referred me to the hospital with the suspicion of a tumor.
Once at the hospital, things moved pretty quickly. In less than a week, they'd taken blood and decided that I should have the offending testicle removed, as it was most likely a tumor.
I did all my crying that day; I've grown up enough to know how my emotions work. When I left the UK to live abroad in 2009, once I knew for definite I would be going, I got pissed up in town and had a tearful conversation on the phone to my mum. It was a bit embarrassing in hindsight, but when it came down to the final day, I was calm while my family broke down in tears. I got my tears in early so I could deal with that final wrench more effectively.
The day they said I had a tumor, I went home, sat about for a bit, then went back to work, thinking I'd be better off there rather than sit around by myself worrying. I lasted approximately three minutes, before someone asked if I was OK, then I dissolved into bitter tears.
After that, I was fresh and ready to go, although the times waiting for action were much worse than anything that actually happened to me. I'm a huge wimp, and have a very low threshold for pain, or any physical discomfort.
Before checking into hospital, I was terrified about three things -
1. Injections/Blood Tests - the last time I had a blood test, around ten years ago when I had glandular fever, I blacked out and needed to lie down for about half an hour.
2. Hospitals - My beloved Grandmother and Great-Grandmother both passed away in hospital, so I had an inbuilt fear and distrust of hospitals in general.
3. The Operation - I'd be knocked out for the actual Op, but was terrified of any drips or tubes sticking out of me when I awoke.
When the nurse took six blood samples for the first test, I tried to counteract my blood test wimpiness by trying to be the big man and jump straight up afterwards. This led to a draining of blood from head to foot, and flaking out on the table in a big sweaty puddle of dizziness and despair.
Once it was decided I should have the testicle removed, the doctor sent me to another hospital to deposit some sperm, in case further treatment - ie. Radiotherapy or Chemotherapy - knocked out the other testicle. Before I could do that, I needed to give MORE blood, so I could be tested for HIV.
I took that one more calmly, and laid down for five minutes before attempting to get up.
The sperm deposit was the saddest wank I've ever had. For this, they sent me to another hospital, and I envisioned scenes from movies where a character will go to a gleaming clinic, and get put in a room with a little pot, a drawer full of glossy jazz mags, and a porno playing on a TV in the corner.
I've always tried avoiding porn due to my partner, who considers it a form of cheating. But I figured she would forgive me this one. The woman handed me a little tub through the window and gave me a key to a small annex across the courtyard.
Once in there, I discovered a couch and a coffee table covered in porno mags. Despite my troubled state of mind at this point, a little pervert somewhere in my mind shouted "Game on!"
It was a bit distressing, though. I knew countless blokes in similar situations had sat on that sad little couch knocking one out over these mags, so first off I felt the need to sit on my jacket. And the mags were all what I would describe as "Communist Era Porn", very dated, and from approximately the mid-Eighties, which didn't help. Even when I was into my porn, I always had trouble with bad haircuts, and here I had nightmare perms and neon colored naughty underwear to wank around.
I've never been a prolific cummer, but I managed to eke out a few drops into my pot, and it was sad to think my chances of having a family in the future might rest on this meager little offering. But, I've always liked a good story, so I consoled myself with thoughts of telling my future children that they lay in stasis in a clinic in Brno, Czech Republic, a bit like Wesley Snipes in "Demolition Man", ready to be thawed out and take the world on.
Even after all that, I couldn't resist a little joke to myself as I left the cabin, thinking; "Maybe I'll keep the key and pop down for another one later on."
When I got back to my apartment, I got a text - "Mr Adams - you forgot to return the key to our room." And had to run back to the hospital to return it.
The hospital itself was a huge barrier for me, and in some ways I was more worried about spending a week on a ward with a bunch of other men than I was about the operation itself.
I was booked in on the Friday, and luckily a friend took the day off work to come along and help translate. Once on the ward, waiting to be admitted, my concerns gradually faded - for one thing, the place didn't smell as bad as hospital back in England. It didn't have that ground in smell of sickness you encounter in UK hospitals, and apart from lunch - overpowering cabbage stench - it was actually quite fresh, and I'd bagged a bed by the window.
The waiting, as always, was the worst, and I was actually quite jovial when things were moving ahead - getting issued with my pyjamas, having an ECG, an X-Ray, and blood pressure taken. The downer was, they couldn't fit me in that day, so would have to go home and come back Sunday.
This was an annoyance and a blessing - while I wanted to get things sorted out as quick as possible, it also gave me time to absorb what was happening. At this stage, even with my operation on the Monday, it was still less than a week between diagnosis and removal - this was going way, way too quickly for me.
Into hospital, I had a few more indignities to deal with - I was shaved down below by a cheerful middle-aged nurse with an amazing dry razor. I'd been growing a beard through the whole time from around when I discovered the lump, and shaved it off because I associated it with the problem. That took four razors.
This old girl had a razor with comb-like prongs, and my pubes came off like a dream. If only I'd had a razor like this when I shaved my beard! It was a weird experience, especially when she was blowing off tufts of shaved pubes with her mouth.
Then she gave me an enema, pumping about a liter of water up my arse to flush me out. I was expected to hang on twenty minutes before going for a shit, but there was no way I could clench that long. Twenty seconds was more like it, but I felt very refreshed afterwards.
My first night on the ward was actually OK, and I was looking forward to any drugs they might give me. I'd heard good things from my mum and other people about morphine, but unfortunately didn't get to experience that. Instead, they popped me a Diazepam, which gave me a lovely warm buzz. I knew it would help me sleep when I put my head down, but sat up for a bit, enjoying the feeling, and even walking around just for the hell of it, just to have a laugh bumbling around on it.
Things moved quickly when they took me down, and the scariest part was actually seeing the operating theater with all the equipment. The anaesthetist was talking to me as they put the drip in my arm, and that was it. I woke up in my bed on the ward.
I'd stated very clearly to my partner I did not want her to be there when I came round, as I knew what it was like coming out of general anaesthetic and being a complete incoherent, gibbering mess.
However, the first thing I did when I came round was try to text her - that was way too hard, so I called her. I called her again later on when I was more with it, and only found out then about my earlier drugged up phone call.
They let me out the following day, and the worst thing about the whole experience was removing the drainage tube from my testicle. That was a horrible sensation - not that painful, but a really horrible feeling as they dragged it out of my nether regions.
I was very sore at first, and had real trouble getting myself from a laying down position to upright, as I had problems getting my arms under me to lever myself up without putting any pressure on my stomach muscles.
My back ached dreadfully, and on my second day home, decided to walk down to my local pub for a non-alcoholic beer and get some exercise. The walk would normally take thirty seconds, but took more like ten minutes, and I regretted the decision half way. It really took it out of me and wish I'd stayed at home.
It's two weeks later and I'm still waiting on the final result of the histology report, but I wanted to share this experience. Firstly, because I know a lot of guys have certain hang ups when it comes to the "family jewels", and in some cases will hang on until it's too late to get it seen to.
And secondly, because I always considered myself an absolute coward when it came to this kind of thing, and I've inadvertently proved to myself it's not a big deal, and I can be brave when it comes to it. It's an important lesson to learn - the doctor says my remaining testicle will remain high risk because of it's origins, but now I won't feel as scared if the worst comes to the worst.
This story is not finished yet; I desperately hope it will have a (semi) happy ending, but hopefully it will be of some comfort to anyone else suffering the same problem.
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My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri
Well.. let me take you to you back to when all this started. All my teenage life I have suffered with migraines which doctors associated with my PCOS (Poly cystic ovarian syndrome) I took regular pain killers for these. Then in Augest 2011 These "migraines" got WORSE a hell of a lot WORSE. I had servere pressure ... behind my right eye to the point I would break down in tears , I went to my local Gp who gave me more Migraine relievers and preventers. Little did I know this would begin to mask a serious problem. By September the 3rd I went to the optician thinking , Okay maybe I need glassess, eye strain can cause headaches.. I went in and done the usual quick checks , I had let me remind you of that word HAD 20 20 vision , then the eye inspection came. Left eye , no problem took 5 mins to look , right eye boom 20minutes of intent concentration and close inspection. The optician said
"I can see a vessel behind your right eye has hemmoraghed" I want you to go the hospital if the pain gets worse this weekend (this was a Sat) he then said if not I want you straight there Monday. So I thought ill sit the pain out. BIG mistake. By the Sunday (the 4th) The pain graduated to pain , pressure and vomitting and blurred vision , so straight to the emergency department. It was very busy with a 4 hour wait. I saw the triage nurse who said my heart was racing probably due to the pain. She then said she was bleep the on call Opician from home... He got to the hospital within 20 minutes and looked over the opticians letter then examined my eyes. Straight away he said he needed to converse with colleagues then he came back and looked again , he put dye into my eye to dilate the pupil for a closer look . He then said there are 7 more vessels which have hemmoraghed and your optic disk is very swollen. By now I was sensitive to light , vomiting and in tears. He said he wanted to admit me straight away. So at 11pm I was whisked to the ward specializing in problems with the head and neck. Boy did I see some sick people on that ward.. Anyway. The next morning the neurologist came round he again looked in my eye and said he wanted a MRI scan and he took bloods and I got IV fluid due to the impressive amount of vomiting I was doing. They tried tablets/injections to stop the vomiting but it didn't work.
Then next morning I was wheeled down to the MRI scanner just as I was about to be put in the machine I vomitted everywhere , over me , the wheelchair and the room..I was given an emergency high dose anti sickness because they NEEDED this scan for a diagnoses , I was told it would either be a brain tumour , blood clot or intercranial hypertention. This scared the bejesus out of me. After a horrible 45 minutes in the scanner I was wheeled back to the ward. 45 minutes later a neurologist came to my bedside with a trolley of hidden equipement , test tubes , swabs and the likes. He said You have to much fluid on your brain trying to escape through your eyeball. (thus causing the swollen optic disc and pressure) He then said
" I need to do an emergency lumbar puncture to realise some fluid." I was scared but desperate to be relieved of this horrendous pain. He numbed my the bottom of my spine with a local anesthetic then put the needle in my back he measured the spinal fluid I had 41 excess units (so basically my spinal fluid was triple what it should be at its highest) He then slowely drained the fluid. I did find the procedure uncomfterable but not painful. Afterwards the pressure slowely subsided. The next day neurologist came and prescribed me a medication to keep the pressure down known as a diuretic. Unfortuently I still remained vomiting and in pain for the next 3 days then my symptons started subsiding. It took me another week at home resting until I could withstand light , read and stand unaided. This is a very scary thing to go through. So many unanswered questions and worries for the future .Around 50% of patients will go blind if the disease is not well controlled. I am now seeing the neurology team at the hospital every month. Eventually I may need a permant shunt in my back to constantly drain excess fluid into my abdoman to save my sight and ease the pain. I have a headache every minute of everyday which painkillers cannot help because its not a pain its a pressure. I do know BIH (benign intercranial hypertention) is more common in obese woman , I am admittidly obsese but am now at a slimming club. I hope my story tells people do no take your eyesight and your life for granted. I now have a constant cloud over my right eye. I am lucky enough to be well managed enough to continue working as a nursery nurse and leading a life which I hope to fullfill to the max. Every minute I am given to see and experience life I now embrace. Sorry if I rambled , thank you for reading this far. x Also if anyone has any questions please message me.
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