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)