Frank

Frank!

I realise I haven’t written anything for some time largely due to writers block – I’ve scribbled down some notes here and there but nothing that would merit a full post until now.

What follows is a frank, open and honest account of a recent event in my life. An event that I am utterly ashamed of, something that only people extremely close to me know of.

You might be wondering why I have decided to share this with the world – I’m sharing in the hope that it will help people avoid these events in their own lives. It will give you an opportunity to help me raise awareness and hope that together we can fix a system that in my opinion is failing.

It all started on Friday 11th April 2014 in the early morning – apparently I was sleep walking around the house. I often sleep walk – usually after a night on the town and in the morning I’m not where I went to sleep. I’m either in another room, in the bathroom on the floor, outside somewhere or naked in a hotel corridor. Monika woke me up to ask what I was doing and this is where the madness began. From that moment on I had no idea what I was doing and now a few weeks on I only see flash backs of a terrible ordeal.

Whatever I was doing or whatever Monika said to me triggered a rage deep within, a rage that I was unable to mentally & physically control. I severely lost it! I rampaged around the house shouting and screaming like a man possessed. I trashed the clothes horse in the hallway, I ripped the light from the wall, I kicked a massive hole in the side of the bookcase, I threw a chair out on the balcony, I smashed a dining room chair to pieces, I smashed several storage boxes to pieces, I threw clothes, I threw objects that were lying around the house and then… I tried to end my life.

I’ve suffered from testosterone-fuelled rages before and I’ve even written about them on this blog – this one was different – this time I was not in control!

I’m not sure if I had properly woken up or if I was still in a state of sleep as I was acting confused and saying (shouting) the most ridiculous things to Monika. I have read online about people with Klinefelter’s Syndrome suffering from parasomnia, which is the medical word for sleep disorders.

I’m only sat here today because of the valiant efforts of Monika to keep me alive during my uncontrollable rage. They say when your life or the life of someone that you really care for is in danger that often a super-human power / guardian angel can take over and help out in the most unlikely situations especially when it’s not your time to go. Monika managed to stop me from taking a knife to myself in the kitchen and then subsequently when I had failed she stopped me from jumping off our balcony (6th floor) to the ground.

For the past 12 or so days I have not slept properly since it happened – I keep having flash backs and when I do dream I hear her crying for help.

I’m not sure how long Monika was crying out for before our neighbours got involved. They must have heard the shouting from me & the screaming from Monika and called to see if we were okay.

Fortunately our neighbours have a key to our flat and were able to let themselves in. They were obviously concerned and called 999 – I was on the floor in an incoherent state and Monika was physically stopping me from going anywhere.

I have no recollection of the time that had gone by – I was apparently still raging, frustrated and desperately trying to end my life.

I have vague pictures in my head of paramedics being present accompanied by police officers. Upon arrival they were trying to make contact with me and suspected that I had taken drugs the night before and this was a bad reaction to the drugs.

For the record I do not take drugs other than what has been prescribed to me for the Klinefelter’s Syndrome. I don’t smoke and I have the occasional drink – the night before I was at an awards ceremony with work and I admit I had too much to drink.

The paramedics and police were unable to make contact with me at the flat and relieved Monika so that they could ask her what happened. Apparently at this time I managed to break free and had another attempt to get to the balcony. This time it was met with brute force and I was immediately handcuffed and put into a restraint by the police. I fought with them for about 5 minutes before they were able to get me under control it took a few of them to hold me down – I was apparently still raging at this time.

They made a decision to take me to hospital and the police sectioned me under 136 the mental health act due to my state of mind with the intention of getting me urgent medical care. I was not being arrested, as I had not committed any crime. Even though I did attack the police officers and due to the fact that clearly I was not my usual self they decided at their discretion not to press charges. I have no memory of them being there, what I said to them, how I acted, leaving the flat kicking, screaming, shouting and raging still.

The police decided that the ambulance take me to the nearby Homerton Hospital that has a special ‘136’ unit to deal with mental health issues. Upon arrival they rejected me as a patient and referred me to the standard A&E where a member of their staff would assess me.

I remember receiving a cup of water through a straw and having people prod me and ask questions in the hospital. I remember a doctor asking me if I was going to behave as I was handcuffed to the bed semi-naked. The doctor wanted to check the injuries that I had that were due to me being removed by force from my home earlier. I remember him asking me if I had taken any drugs as they could see a crystalline substance around my nose. It was probably crusty snot & tears following my earlier outburst.

The below is my discharge form from A&E – I have removed names to protect those who were involved apart from my own.

Homerton Hospital

After about an hour I came around and slowly started to realise what I had done. I have never felt so ashamed in all my life – not remembering what happened made it worse and even now the flash backs haunt me. My initial question to a teary eyed Monika was did I hurt her in anyway and thankfully I did not. The police officers then visited me as they were not able to leave the hospital until the consultant from the 136 unit had assessed me. They started to fill me in on my actions and I felt a strong feeling of remorse and I was very apologetic towards them. I thanked them for their actions and decisions – it could have been a lot worse for me – I think they did want me to get help and not intentionally be heavy handed with me.

Moments later the consultant came to visit me – he told me that he wanted to spend 30 minutes talking to me on my own and then some time to talk to Monika and me and then talk to the police.

For the first time since the diagnosis of the Klinefelter’s Syndrome I’m actually (spookily) talking to someone who is a) aware of it & b) understands the how a person with it can behave in a way similar to the events that took place.

These are some of the things we talked about and it felt good to talk;

  • My childhood & my family
  • My father passing away – his cancer and how it’s apparent that I’m not quite over it yet.
  • Previous relationships that ended badly.
  • Drugs – I reaffirmed that I am not into that scene
  • Alcohol – there was a time following my initial diagnosis I turned to alcohol to solve my problems – not a good idea
  • Sleep disorders
  • The system for identifying Klinefelters Syndrome
  • Klinefelter’s Syndrome in general > support, medication and lack of information
  • Infertility
  • Monika

The consultant came to the conclusion that various things in my life had been building up and that this outburst was related to that. Clearly mixing a large volume of alcohol and testosterone played a part & he was concerned that my medication should be closely monitored and regulated during the year. We discussed my sleepwalking and he agreed there is an issue to be addressed and he would refer me to a specialised sleep disorder clinic. In terms of my general state of mind he did not seem concerned at all – which is a positive.

We spoke at length about the Klinefelter’s Syndrome and how I feel about it – I mentioned to him about my blog and I suspect that he will be reading this post, no doubt he will add comments if I have missed anything out.

We then spoke at length about infertility – out of all the symptoms related to the syndrome this is the hardest one of all for me to bare. I get bogged down when I see friends get excited about their new family and wish everyday it would be an easy process for me to have children. We talked about the exploratory operation to find sperm and the cost implications of this. We then talked about the cost implications of having children by sperm donors and the effects that would have upon our lives.

We then spoke about Monika. Monika is my rock, she is my one true love and without her I would not be here today. I have never met anyone who has supported me through life’s twists and turns as much as she has done – even now, a few weeks on from this event she is still proud to stand by my side – continue to love me for who I am and wants to be my wife. In addition is willing to do whatever it takes to have a family with me, even if that is through exploration, donor sperm or adoption. I am very lucky to have this level of support in my life and I know that now more than ever before.

Following our chat the consultant recommended reading a self-help book whilst he made the necessary arrangements for specialist genetic counselling for me, something that I desperately need. The book is called ‘The Feeling Good Handbook by Dr. David D Burns’ – it’s about £9 on Amazon.co.uk and is the best £9 I have ever spent. The first few chapters are a bit wordy but stick with it and it will teach you some amazing techniques for how to avoid situations like I have described above.

I mentioned at the beginning about a failed system that together we can fix. I know that there are a lot of people out there who are not keen on discussing Klinefelter’s Syndrome and I understand that. However we can together drive awareness and we can improve how the system deals with adults who have found out about the condition later on in life. Modern technology makes it possible to screen for genetic defects before a child is born which gives new parents a chance to get support for their children early on.

The health service does not offer the same support for adults who have just found out about this condition later on in life and you are left to find out information / help yourself.

Next week I am taking annual leave from work. On Monday I will be printing out this letter and sending it to local / national MP’s and health organisations with the intention of them a) watching my video b) making them aware of the support that adults need.

I know that many of you reading this have various connections in media, politics or working in the health service. I would encourage you to print this letter off wherever you are in the world and help me raise awareness so that we all benefit from a better service. It would mean a lot to me and to the others who are unable to come forward. I would also encourage you to share this blog post – and the video I produced http://bit.ly/47xxy it took a lot of courage for me to share my story with the world and I’ll continue to do so with the hope that others will benefit from reading this.

On a side note – something you may not know, is that if you are ever feeling down, you can always go to the A&E department of any hospital and ask to speak to a psychiatrist for obvious reasons. They will see you and they will help you – like they helped me. If you want someone to talk to you can always call the Samaritans 24 hours a day, 365 days a year – I admire their work and recently I have called them to help me get through what has been an immensely tough time.

Mistakes are always forgivable, if one has the courage to admit them.
- Bruce Lee

toughmudder

Are you a Tough Mudder?

Turns out this is not the blog post that I had intended to write this month! I’ll revisit that post at a later date.

I’m really excited to have made contact with Alison from the Klinefelter’s Syndrome Association and it looks as though I’m going to be getting involved & helping with the charity – using my skills from an online marketing perspective to help them fulfill a shared goal – awareness!

I’ve talked a lot recently about undertaking a challenge to raise awareness – started out with doing a bike ride and a gaming marathon. For both of the plans I only had support from a couple of people so we didn’t end up doing either of these – thanks to you if you did sign-up though, it’s certainly appreciated!

I was out for a few beers about two weeks ago when a friend of mine asked me if I’d like to join her to undertake a 12 mile obstacle course – asking for more details I slowly started to realise that this is no ordinary obstacle course – only the worlds toughest obstacle course devised by special forces operatives. This is the description that you can read on their website:

“Tough Mudder events are hardcore 12 mile-long obstacle courses designed by the Special Forces to test your all around strength, stamina, mental grit, and camaraderie. With the most innovative courses and 1,000,000 inspiring participants worldwide to date, Tough Mudder is the premier adventure challenge series in the world.”

Tough Mudder

I agreed to take part in the challenge and to prove my willingness I tweeted to 17 thousand followers. – no backing out now!

You are probably scratching your head reading this and wondering why I have decided to do this? Or you are looking at the picture above and imagining me rolling down the hill covered in glorious MUD! Well I’ve been promised a bright orange headband, a t-shirt and a pint of strongbow if I make it to the end after enduring fire, freezing cold water and the chance of getting my wee balls charged with 10,000 volts of electricity – that’s if they survived the arctic enema challenge!

I’m doing this as part of a team of co-workers and mutual acquaintances to raise awareness for Klinefelter’s Syndrome and also get some funds together for the only UK charity dedicated to supporting people diagnosed with this condition. If you have been following the blog since I started you are aware of what the Syndrome is and what I have had to endure throughout finding out about it on both a physical and mental level. If you are not aware and this is the first time you’ve come across the blog then best to check out my video here (over 25,000 views now!) that will give you an overview of what Klinefelter’s Syndrome is and what it is like living with it day to day.

It’s really easy to get boiled down in the negatives associated with the condition but I am determined to show others that you cannot let obstacles get in the way of you enjoying your life – and what better way than getting past 22 obstacles over 12 miles somewhere deep in the valleys of Wales!

 

Klinefelters Syndrome Tough Mudder

 

If you would like to get involved then the team (me, David McDonagh, Jacqui Ashworth, Matt Cuttle & Sarah Baldwin) would really welcome your support either by donating or sharing this story with your family and friends. The aim here is simple – to raise the profile of the condition with the medical profession, other public and private bodies and the general public so that all understand its implications, not only for the individual affected, but also for all those with whom they have contact during their lives! Do something amazing and sponsor/share on this page: http://bit.ly/pro47xxy

You have got this far therefore would like to take part in our team? To join us just go to the Tough Mudder website and sign-up for the event that is taking place on September 21st 2013 – the team name to join is Project47XXY – drop me an email on info@47xxy.me if you do sign-up.

Do enjoy the motivational video:

I’m looking forward to what happens at 24mins 47secs most!

power

The Power Of Perseverance

Last time I wrote it was coming to the end of 2012 and my video on YouTube had just over 8,000 views. In just over three months it has almost doubled in views (18,746 views) and I have received many words of encouragement and praise from around the world. This makes me feel amazing and if you are reading this blog and have Klinefelter’s Syndrome I urge you to get off your backside and do something similar – it really does make you feel better inside when you read all the positive comments.

It might seem like a long time ago since I last wrote a piece here and I think a few people may have thought I have given up. This is not the case! If you have been reading from the start of the blog you will know that I was determined to make a difference and overcome whatever life threw at me. Well life threw a few things my way including some unexpected (slightly expected) challenges to do with work. I decided that I had to prove to myself and to my colleagues that I can do the job and by doing so I put everything I had into achieving my goal.

Towards the end of last year I met Monika – and I got an instant happiness boost! I went through a few months of thinking that no-one would possibly want to be with me as I am genetically flawed. Then I thought to myself just because I am different does not mean that I cannot find happiness or love. Only you can make the changes in your life and go and get it. It’s certainly difficult and it won’t come straight away but when it does – let me tell you this: it’s an amazing feeling! 

I’ve been on the testosterone treatment for just over a year. I got excited when there was enough facial hair for me to go out and buy an electric shaver. I now let it grow for about 5 days and then shave it off. Yes it looks ridiculous having a small clump of hairs on the end of your chin. When most of my friends were growing up I suspect many of them started this way and in time they formed into something that resembled a beard or a moustache.

I mentioned the changes I noticed in my last blog one change that comes to mind more recently is strength. As I start to feel physically stronger, I feel that my confidence is growing more and more each day. I used to hate confrontational situations and I would instantly back down if faced with them. Now I’m standing up for myself although sometimes it does get too much and I have to remove myself from the situation as I feel the hulk coming out. I’ve been in a situation like this twice in the past three months. Once at work when I disagreed with a colleague and once in the pub when a friend just would not drop a certain conversation, even though I had politely asked them to change the subject. When I spoke to Monika about this, she managed to instantly calm me down and I returned back to normal – although I was still wearing those ever so fashionable purple shorts.

Purple is my favourite colour so there is probably a reason I was wearing them at the time!

I’m almost 34 years old and recently the boost in confidence has made me realise where I have come from and where I want to go in life. I woke up one morning in early January and thought to myself it’s time to make a few other changes to my life. Monika and I had planned to go away with her family and friends to the far east and I was planning to ask her the ‘special‘ question on a romantic beach somewhere in the Philippines. Due to work commitments I was unable to join her for the trip and thus my plans were tipped upside down! I was not going to let this minor set-back get in the way of being the happiest man in the world so I came up with a plan B!

There comes a point in your life when you realise you have to Man UP! & so on February 10th 2013 that time had come:

I’m still smiling from that date and we are now planning for the wedding, that is likely taking place in the summer of 2014. If you are like me and have Klinefelter’s Syndrome do not give up! Harness the power of perseverance. For it is holding your chin high, remaining steadfast and continually advancing toward whatever your individual desires might be!

I’m determined to raise awareness about this condition and help others along the way. Last year I wrote to the Klinefelters Syndrome Association to see if rather than setting up my own charity, we could join forces and use my project to raise awareness and funds for their cause. I was beginning to give up hope as it had been a few months since I had emailed them. Then sometime last week I received an email from them apologising for taking ages to get in touch with me.

The power of patience prevails! We have exchanged a few emails and they were not aware of my video but they did praise me for the work that I was already doing. I’m hoping to meet with them soon to discuss fundraising and also raising awareness! It would be awesome to be involved with them in an official capacity. You might remember that I was trying to organise a sponsored cycle from London > Paris. The number of people that signed up did not make it to double digits and I really needed about 15 people to sign-up to make it worthwhile. So for now I have shelved that idea. However I’m not giving up and if the KSA agrees I’m probably going to host a sponsored gaming marathon – as the thinking is if you can sit on your arse and play video games more people will likely want to take part. If you are interested giving up a few hours to help me in this cause then please enter your details below:

 

I’ve received many positive emails, comments and messages about the video I put up onto YouTube last year. Recently I have been contacted by several educational institutions asking me to answer questions for students. I’m not an expert in this field but I am happy to give my opinion on how this condition effects me and my daily routine. Recently a couple from Brazil got in touch with me and told me that their unborn child has the extra chromosome and they were asking me how this will effect their child in later life. I told them to be supportive as growing up will be difficult and there will be many challenges to overcome throughout life. They told me that I was a warrior and that I should be very proud of what I have done. I am – and I am very happy that I can help others!

Before you set out to do anything that you want to change in your life just watch this video;

Harness that power of perseverance!

 

 

testosterone

Twelve Months of Testosterone

Wowsaz! It’s been August since I last had wrote a piece. Quite a few things have been happening since then and it’s not that I haven’t wanted to write something. I have been writing elsewhere and mostly responding to emails from people who have found my video interesting. Funny to think that a video from me about Klinefelters Syndrome has attracted over eight thousand views on YouTube and many comments from people just like me saying that it was great! Makes me feel good inside that people are getting something out of it!

Testosterone

Twelve months have gone by in a flash and I thought it would be apt to post this piece on 12/12/12 @ 12:12 exactly! I’ve been on Testosterone now for twelve months and I wanted to document the changes:

  • Increased energy levels
  • Increased libido
  • Increased ability to focus / concentrate
  • Noticeable change in positive demeanor
  • Facial Hair (not quite a beard – but more than bum fluff!)
  • Body Hair (light)
  • Confidence Boost
  • I haven’t been to the gym yet – although I plan to start going in 2013 as the next change for me is getting fit & attempting to gain muscle mass!

Funny thing is I have noticed some other changes in my general character which I can attribute to the confidence boost. I mentioned to a friend once when we were out having a beer that it’s almost like people can sense the increased amount of Testosterone flowing through my veins – it’s like men instantly want to fight me & women… well women just want to bite me!

Recently I’ve got myself into a few situations, one resulted in me being banned from a certain establishment in Guildford for being confrontational! Prior to taking the treatment I would have just walked away from the situation or hid behind the power of my friends – in this instance I decided to stand my ground against someone much bigger than me – which resulted in me not being allowed to go back to that place. I’m happy that I stood my ground, yet it scared me a little bit how I have changed. At the time, I felt a confidence rush – I guess with great powers come great responsibility and I have to learn to master this new found confidence without it resulting in a negative outcome.

Moving on… my good friend and work colleague came over towards the end of August and we were debating the pitfalls of our age and single life – would we ever be like our other responsible friends and find a relationship. We joked about online dating and over beers began to look at the various catalogs of the opposite sex to see if any would take our fancy. It was decided that I would trial a service for one month – and I’m glad I did!

It was getting towards the end of the month and I had been on a few dates with no amazing outcome, so I decided it was time to remove myself from the service and go back to the single life. Just I was pressing the delete profile button – an instant message popped on my screen… “hello” – well.. I was shocked and thought okay this is weird! Checked out the profile , read the introductory text and thought to myself – this must be a joke. This lady is hot! Really hot and it got me excited! So I decided to respond with the usual “how are you?”

The response that I got back was a bit strange – “I have a problem, can you help me?” – eek, I thought! Turned out that the lady in question didn’t know how to make her SKY TV remote also control the TV. I thought to myself – I KNOW HOW TO DO THIS!!! So I began over messenger to give her step-by-step instructions – to an almost instantaneous reply – “Wow, you are my TV hero!” We swapped numbers and that very week we had our first date, which was on a Wednesday – an awesome Wednesday!

Everything about the date was perfect. I had forgotten all that stuff in my head about “will I ever be able to find someone to love again with this condition?” – it just went and I was for once enjoying the moment. Then I had another one of those confidence boost moments, this time instead of it being confrontational – it was a moment of me being forward – diving in and going for the kiss. It could have ended really badly – but it didn’t , she replied with “wow” (yes she did!) and that she wanted it to happen and was glad that it did! I was so happy! We left the bar (it’s now my favourite bar in Soho) said our goodbyes and I think for the rest of the week I had a perma-smile for once!

Monika

Several dates, months later and we are now seeing each other regularly and recently we have visited each others parents houses and everything.. well everything is just perfect – another reason why I haven’t had an opportunity to write much here is that I have been enjoying her company! ;D

Now with all relationships come questions about what happens next – and where we go on our journey. Recently we had a discussion about “plans” for the future and I responded with “I don’t have a plan!” – I’m on a journey. I received a perplexed response – “well you have to have a plan” a notion of where you want to go in life and what you want to do with it. Looking back over the years I had plans, I had great plans – and through this planning I have only ever experienced disaster. I think at the time of the discussion I wasn’t able to articulate how exactly I felt and I mentioned to her last night that I will have to write it down – then maybe she can understand why I never plan for the future, and why I live in the spontaneous world known as Sheridan-Town!

Rewind back to 1998 – I was a university, I met a girl (as you do) & created a plan! The plan was we would move in together, and save for a house – with the hope of one day getting married & settling down for a family. At that time I had no idea about the Klinefelters Syndrome & the thought of having a family was only part of the plan somewhere down the line. So we got engaged, bought a house near to Brighton and continued on the plan – my Dad & his wife and my little brother came to visit us in our house and well this is where the plan drifted off course. My dad had a funny turn whilst visiting us and he was diagnosed with having brain cancer – he had to have several operations whilst in my local area to remove the tumor from his head. My whole world fell apart during this time and the plan went to shit. I neglected the girl and she found love interests elsewhere at work – which caused us to split up, me move out of our house, find a new job and well… start again. This all came after my Dad had passed away, and the road leading to his departure. I couldn’t cope with what was happening around me – I was a mess. Today is Dad’s birthday – every year on the 12th December I remember my dad – rather than remember the day he left us – I remember the day he was born. I miss him dearly!

Dad

So.. I moved on – I spent the next year or so living the single life – I didn’t have a plan – I just wanted to live spontaneously. Losing Dad made me realise that you can’t plan for the future as you don’t know what is around the corner – what happened to Dad was really sudden, no one expected it – it just happened & we all had to deal with it and remain strong.

About 9 months after living on my own after the break-up I somehow managed to get myself into another relationship – still unaware of the Klinefelters at this time. Thought I was happy – had a few hiccups along the way but managed to pull through them and create another plan. The plan was that we would save for a house, so we downgraded our lush town center apartment with pool, gym etc and I would also get rid of my sports car! :(

RX8

We decided that the plan would be unconventional – we would get the house first, then look at children, then get married (as you do) So we moved into a rented house and this is where all the problems started! We started to try for children – and had no luck – so I went to the doctors and this is the time in my life a year or two ago when the Klinefelters was discovered. It was a massive shock for both of us – and again the plan fell apart! I guess she wanted a child, a house and follow the same path as all of her friends. So we split up and then three months later I find out that she announces to the world that she is pregnant, moves in with another guy (buys a house) to live happily ever!

I guess these two examples illustrate the way I feel about life planning, ends in some sort of disaster. Yes I found out about the Klinefelters – but then am I better off? I guess I am for being able to change the way that I live and feel much better for it by taking the medication – but now I have a zillion thoughts running through my head whenever someone mentions a plan. This new relationship is quite different to the others, I know about the Klinefelters now and I have had the conversation already. It’s not going to be easy to consider having a family – and the one thing that scares me the most is that we might try it, we might plan for it – and then it might get all too much… going to park these thoughts – something I’ll come back to in another post!

Following on from creating the video I have had many people write to me asking me questions about what it was like growing up. Many teachers, parents and even people with an interest in the condition have reached out to me about my opinions. I’ve had to stress to them that at the time I did not know, my parents did not know about the condition so I can only look back on certain situations and apply the knowledge I have now and how that might have attributed to the way I was feeling at the time. Therefore I have decided to collect some thoughts together and write about what it was like growing up – till the present day. I was working on a book called “Living with the X” – this is still going to be the title, probably going to pan out slightly differently to what I had originally thought.

Another colleague and friend recently designed an amazing illustration of me – and I asked him if I could use it as the cover of my new book. It’s a really cool image and I think it represents me well – and will stand out on a shelf when someone walks by:

Living with the X

In addition to this, he has also created a new logo for the project and it’s really cool! So just one thing to say – thank you David McDonagh :D

I’m fortunate to have a good job and work for an amazing creative company – each year we get to take a day out of work and either volunteer or raise money for charity. I thought about turning Project 47xxy into a charity. Whilst it is something that I will want to do eventually it’s not something that I can do on my own and need help from people around me to get it off the ground. I came up with an idea to cycle from London to Paris to raise awareness for the condition and I would like to do it on behalf of the Klinefelters Syndrome Association Looking at doing this next year and it would be great if colleagues & friends would join me in this awareness adventure. Our company appears to get behind other great charities like Movember, Cancer Research, local charities and I’m hoping that they will support me.

As we are approaching the holiday season I wanted to ask a favour from all of you who are reading this – one of the research papers I contributed to recently struck a chord with me in the final statement, can you do this for me:

Ask friends at the your next dinner party or some of the members of your family what Klinefelter Syndrome is and you are almost guaranteed either a nonexistent or incorrect answer. Ask yourself and ask others: is this response really acceptable?

Happy Holidays!

Dan

cologne

Ich bin Ihnen sehr dankbar

I’ve just come back from a week working away at a games convention in Cologne, Germany called Gamescom. So I thought it fitting that I title this blog “Ich bin Ihnen sehr dankbar”. This translates as “I am very grateful!”

I am extremely grateful to everyone who has supported me in setting up my project to help others like me. Two months ago I decided to stop being depressed and do something that would really make a difference to the lives of others – channeling all of my energy into an awareness campaign and raise some (£) pounds in the process.

I managed to raise $745 of my $20,000 target mostly through the kind generosity of friends, colleagues and received many pledges of support from the community that surrounds me in my job & for that I am extremely grateful.

These people all deserve a special mention:

Ryan Sheridan
Brooker
Jun Yoshino
Michelle Dewhurst
Lee Williams
Hannah Kitson
John Sylvester
Keith Pape
Stephanie McAreavy
Nick Silversides
James Dean
Kieran Semrau
Tom Wallis
Richard Burley
SMBayer
Nye Davies
Mark Reid
Anonymous (Thank you secret person!)

So what happens now? I’m working with a designer to produce a new information booklet about the condition that I hope to send out soon. I’m planning a fundraising evening to celebrate the launch of the charity & my new book – “Living with the X”. I’m in talks with various publications to do features on the condition & I am planning a London to Paris cycle ride with the aim of raising more funds to sustain the charity ongoing. It’s looking like the end of March/April 2013 and I would really love for you to join in — comment below if you are interested!

You can keep up-to date with the project by following me on twitter as @project47xxy & watch my video blogs on Vimeo here – please don’t stop sharing these videos, and if you happen to have any “celeb friends – as I know some of you do – ask them to do a cheeky tweet… I’ll make them a bacon sandwich & a good northern cup of tea! :D”

Thanks,

Dan

bats

I’m Batman, seriously!

So I’ve done a video for Project 47XXY – I’m not really Batman that was just a way to get your attention! Did it work?

Thanks to everyone who has contributed to the cause or pledged support it’s really appreciated!

Expect more videos from me over the next few months!

Dan

crowd

Project 47XXY Indiegogo

 

Massive thanks to everyone who has contributed to Project 47XXY on Indiegogo.com. So far I have raised $260 and received many pledges of support from those around me and I am very grateful.

If you do one amazing thing this week then go here & use the share buttons on the page to help me raise awareness about the condition known as Klinefelter’s Syndrome.

You can keep up to date on the project by following me on Twitter. If you have a story to share I would love to hear it – you can send me a message from here.

I really appreciate your support in helping me to raise awareness of the issues and implications of individuals diagnosed with Klinefelter’s Syndrome.

Dan :)

Crossroads

It’s been a few months since I last put pen to paper and wrote down the thoughts swirling around my complex mind. I have given myself time to think about how best to put things without causing offense to people concerned and it’s been hard, it’s been REALLY hard! I think I am ready now.

Rewind the clock back a few months to the month of April. I had been suffering from the stresses and strains of modern life and found out a few things about someone that I used to care for. On top of that I had my annual review at work to look forward to and I knew in my heart of hearts it wasn’t going to have a happy outcome.

I had been finding it really difficult to sleep and often would go for a few days without uninterrupted sleep. This happened a few times prior to the day of my review. I also had an upcoming appointment with the specialist to check up on how I was doing on the ‘T’ and to get the usual blood analysis done to make sure I am on the correct dose.

So the day of my review came along and I got told some great things that I was happy about and then I got told the bad things towards the end – it was that inevitable ‘however’ moment when your heart stops you get sweaty palms and you know that something is going to come out of someone’s mouth that you were expecting but you didn’t expect exactly what was going to be said.

Now I’m sat in a room listening to all the things I could do better and thinking to myself that the past 9 months haven’t exactly been plain sailing for me. So one does have to take that into consideration.

I wonder again to myself why did I not just buckle under the pressure back then –because that’s not what I do. I soldier on and keep on going until I cannot go on anymore. I had now reached this point & afterwards I felt like shit – I couldn’t focus on my work, people were talking to me and non of it made sense. I had to get out and it had to be quick.

I ran into the toilet at work and had a moment. My hands started to sweat I was finding it hard to breathe and I slumped in the corner with my head in my hands and thought “why the fuck is this happening to me – I tried and tried and gave it everything and now I’m failing at work too!” I got my stuff and left the office – I don’t think people realised I had left.

At first I thought it was the medication messing with my brain – I had read online that some people have had really bad mood swings and others adapted to the treatment with ease. I was looking for something to blame other than myself – I called the doctors as I was in a bit of a state, my first encounter of a panic attack and they made me an appointment for the next day. I also realised that I had an appointment with the specialist the next week so I was anxious to see them and explain all the things that I was encountering.

I went to see the GP the next day and explained a lot of what had been happening and the lack of sleep that I had and the lack of focus / concentration. The GP reassured me that it wasn’t the ‘T’ and could be any number of things most likely caused by stress and the situation. I told her that I couldn’t sleep and my work was being affected and I had been waiting for a few months to be referred to see a genetic counselor. The GP was really good and took time to listen to all my issues and I must have been in the room for about 30 minutes talking to her about taking the ‘T’ – the past 9 months or so, work, previous love interests, moving and we both agreed that I was suffering from stress. The GP decided to refer me to a specialist so that I could talk to someone about everything, she even said that she wasn’t surprised after everything I had been through that it was affecting my day to day. I asked if I could have something to help me sleep as it was day 3 of 4 interrupted days of sleep – and so she prescribed me with some tablets. I only took one of them and put the rest away as I’m not a big fan of talking tablets for the sake of taking them – it did knock me out and I did feel a lot better the next day.

It’s now the day of my hospital appointment and I’m sat in the waiting room looking at all the people looking at me trying to work out what is wrong with each other. Within about 30 minutes of my appointment (it’s always running late) I am called into the consultation room to be greeted by a familiar face. One of the consultants who initially told me about the Klinefelter’s syndrome was in the room and I instantly felt relaxed as she actually seems to care – it’s appreciated when you go into a bleakly decorated room to be greeted by a friendly smile and a notion that someone is willing to listen to your story. There was also another consultant in the room an endocrinologist (hope that’s right) and he seemed okay too – if not quiet and mainly around to observe.

I was asked how I was feeling and it was at this point I got upset.  I don’t normally break down but the way that I was feeling it just seemed like the perfect place to shed a few tears. They asked me how my partner was – and I think this is what triggered it as I had to tell them that the relationship is no more. I could see the look of concern on their faces as they handed me a tissue.

They then started to ask me about the treatment and had I noticed any changes within myself. They also asked if I had joined any of the organisations that they had told me about at the last appointment.

I told them that I had facial hair and I grew it specially to show them – and around the area where I apply the cream I am starting to see hair growth. I also told them about my increased libido and heightened sense of arousal and I also told them that I had a lot more energy and my focus had increased in the past three months. They seemed pretty impressed with what I had to tell them. They asked if there were any negative side-affects and I mentioned the mood swings and the lack of sleep.

We talked about the stresses and they said it could just be the situation however one does expect when your body is undertaking a change that some levels of hormone imbalance are to be expected. I was asked to keep a daily mood diary and report back in three months time.

I told them that I had not joined any of the organisations as they did not appear appealing and frankly the literature that was given to me at the initial consultation was really off-putting. I put an image in a previous blog post to illustrate this. I told them that I was writing this blog as a way to document the change and also a way to help others in a similar situation to me. They wrote it down in my notes so I guess someone will have read or will be reading it at some point.

I then left the consultation room and made my way down to the vampire room to have my blood taken. I used to get really apprehensive over needles and blood – I remember having to have special cream so that I wouldn’t feel the scratch – I also remember punching an anesthetist once who tried to jab me with a needle multiple times – I was young so it probably was more of a tap than a punch!

A few jars later – filled with my blood – I’m walking back to the office. I left feeling a bit strange as I’m doing all this by myself now. Prior to this moment I was doing it to find out if I could have children – now I know I can’t it’s a voyage of self-discovery.

When I got back to the office I put my head down and got on with my work and then left and went home to have a long hard think about my life and what I want from it. I decided that I’m going to start to put ‘ME’ first in all things that I do going forward and focus on building back up my career. It’s not nice to be told that you are not performing as expected and so I wrote down a list of things in my head and made an appointment with HR for the next day.

The meeting went well and following this I had another meeting with HR & my boss and a colleague to map out areas of improvement over the next 2-3 months, which would be measured. I’m determined to make it work, I know I can do it and I guess they know I can do it otherwise I wouldn’t be going through these improvement sessions.

So work are helping me out – they know that I have struggled with my sanity over the past 9 months or so and they are willing to put that to one side and invest in my future career and for that I am thankful.

Right so I have got my work sorted and starting to release some of the pressures of the day to day – now on to me. I had been referred to a psychologist by the GP as I was in need of talking to someone about the past 9 months and being realistic probably the whole of my life. The past decade has been filled with trials and tribulations from a long-term relationship at uni > buying a house > watching my dad suffer with brain cancer > watching him fade away > losing my job > starting a business > breaking up with my fiancé > moving from Brighton to Chertsey > new job and starting from scratch > building a new relationship > trying for children > discovery of Klinefelters > breaking up with someone I cared for a great deal  > problems at work > discovery that last girlfriend has now moved on and is now pregnant!

While I am happy that she is pregnant and is getting what she wants from life and essentially is happy. I’m not a fan about the way that chapter was written. I need to talk about this with the professionals but for now I shall write about it and share my feelings with my readers.

I wanted to write about this sooner when I found out although it wasn’t my place to blurt something out there. I did pen a lot of thoughts but most of them ended up in the bin. I did have my suspicions though as everything in her life was advancing rapidly. I had heard from friends that they were looking to move in together on a more permanent basis and I was told back in January that ‘we’ would never get back together. I’m not going to lie I found this really hard to deal with. This set the inner detective inside me working on overdrive looking for clues to confirm what I already had suspected – a pregnancy. I know that we all move on and we have to overcome seeing our past lovers move on – this just felt really quick for me and I still felt raw about what happened.

It was just another day in May and I had an email asking if I would be able to arrange a date for her to collect some things and if I was willing to meet up so we could catch-up. I had been pretty emotional and got drunk and said / did some stupid things which marred our friendship so I was trying my best not to think about her too much and ignored all the emails & texts I received.

I did the complete opposite of what I said I was not going to do in my previous blog post – I turned to alcohol & food as a way to make myself feel better but all I ended up doing was getting fat and making myself feel worse about the situation.

After talking to a good friend I decided that I needed to talk to her and we could be amicable and maybe we could be friends again. I apologised to her and explained my reasons for this – we agreed on a date for collection and then we didn’t really speak after that.

I started to notice the bump appearing at work and this started to make me feel sad. I’m sad cause I’m an emotional sod and from my point of view we tried to make it work between us for 2/4 years we were together. Through this time we found out the reasons why nothing was happening; the Klinefelter’s and the infertility.

What hurts me more is that within a few months of us splitting up she was with someone new (I expected this) a month later she is pregnant (did not expect this – it’s really easy with someone new) and then 3 months later buying a house with this guy and looking forward to a prosperous future. (I did not expect this)  I have been trying my best to man-up and not think about it. However it is hard when you see them walking around the office everyday – you see before you the life that you wanted. Your character in that dream you shared is now being played out by another guy – it’s a constant reminder that you failed in life again!

Failure is not an option, right? So having already been through my rebound phase – I wanted to find if there was someone out there who would accept me for my failings. I deserve to find happiness, right? I did just that I had found happiness across the ocean and the spontaneous part of me decided ‘who wants to live forever’ & so I got on a plane to meet my new love. I had an amazing time and managed to reset myself back to me again just like I did when I went to NYC!

Though when I returned home my happiness started to unravel when the situation I found myself in became less clear and more complex. I pondered – not again! I wrote a poem to sum up how I was feeling at the time;

No Strings Attached!

You must have misheard me dear
I replied on many occasions
I felt love
Yet you seemed in love with another
I wonder after your message
If ‘no strings’ is only what you wanted
Not me
The fool
Remember I am barren
Without child
I may not understand
The hardships you face
I understand life
and this life has not been kind to me
Full of deceit and neglect
I get sad,
lonely often.
Seeing Emma everyday at work
and her new man -happy & full of glee
I see the bump that I could not provide
So I am protective over my thoughts,
my feelings of love.
When I received your messages
I thought… is that all I was for you?
No strings attached!

Dan Sheridan (c) 2012

Am I ready to love and be loved again? Is there a prosperous future for me and what is my calling in life? Which career path should I follow? Are the choices I have made so far the right ones?

It’s a tricky situation to find yourself in when you reach a crossroad in life. One thing I do know is that I have been put on the earth to help others and feel happiness through a sense of accomplishment of seeing others reach their potential. I started to talk to a few friends recently about the possibility of starting up a new charity or organisation for people like me who have just discovered the wonderful world of Klinefelter’s Syndrome. If you go to Google and type in the word – there isn’t a great deal of information about it & most of it is confusing. There is only one organisation in the UK that relies on charitable donations for funding. After reading all the documentation associated with becoming a charity it seems like it’s too much for just one person to do alone.

Therefore I have decided to start up a project involving a global funding platform. I’m hoping that through this project named ‘Project 47XXY’ will enable me to raise awareness about the condition both in the public eye and within the medical profession in order to create an understanding of its implications. This will be beneficial not only for the individual it affects but also for all those who they have contact with during life.

I’ll be continuing to write monthly blogs about the condition featuring regular project updates.

I hope that you will help me to raise awareness of this condition through a small contribution and become a founding member of Project 47XXY.

Thanks,

Dan

(You can follow the project on Twitter here)

Klinefelters Syndrome