What to expect when you’re not expecting

‘Pregnancy’

Uggh the word that invokes some of the same feelings in me that the word ‘Volde…’, sorry ‘he who shall not be named’, does in Harry Potter world.  The heady mix of genuine delight (less Harry Potter…) along with fear, sadness and anxiety.

I have mentioned before that most of my friends have children, in fact of my close friends there are only 3 of us (which includes me) who are not married or have children.  I am genuinely excited when friends tell me their special news but no matter how much I am ok with the fact I have MRKH, made peace as much as I can with what that means etc etc, the pangs of sadness that follow that announcement I don’t think will ever go away certainly at least not until I have my own family, if at all.

The impending feeling that I will never have that (even though of course I can still have a family but everything is more dramatically enhanced when you feel low) and I’ll be left as a childless cat lady is a genuine fear that stops you in your tracks and it always seems to be those that have children that tell you that having a family ‘isn’t all it’s cracked up to be’.  As helpful as you might think that is, and lovely that you are trying to make me feel better, it’s not, and attempting to sugar coat it doesn’t change it.  I am fully accepting of the situation and sometimes I just feel sad.  It’s ok to feel sad sometimes.

I wouldn’t change my relationship with my friends or their children for the world  (I mean who doesn’t like being locked in a wendy house and having balls thrown at them by a 3 year old, for example?) but I am not ashamed to say that I have gone home after some announcements/encounters and  had  a little cry. That gets it out of my system and then I move on.

This morning though I woke up (at 4.15am) following a dream that I was pregnant.

What a shitty ‘dream’.

Now we all have weird dreams from time to time, often they are ones that we wake up and never remember but some wake us up in panic or fear like the recurring nightmare I have about someone being in my house when there absolutely isn’t yet at the age of nearly 33 the only way to get back to sleep is to put the light on.

But this was different, this was a dream that saw me happy and carefree (which I am) but with this very alien feeling baby bump.  I have felt friends tummies when they have been pregnant and felt ‘baby’, ‘bean’ even ‘brian’, move and I was feeling those feelings inside me, then you wake up and you realize that yep its was the dream fairies playing tricks on you, like when they let you dream believe you were married to Ben Affleck.

I feel awkward around pregnant people more so than the children themselves, it’s odd. I can’t really explain it but something about this weird tummy stretching life giving bump that fills me with all kinds of weird tingles.

In part I am sure it is because I won’t have that, whatever route I choose to have a family it can’t be that one that is one certainty there.  Those anxious 9 months of cooking makes that special little person(s), it’s a feeling that provides much warmth and comfort in some ways at the beauty and power of the human body but sadness for so many of us (MRKH or otherwise) who won’t ever get to experience it.

This may read like a total ‘woe is me’ post, and I suspect my minimal sleep may have added fuel to that thought, however it isn’t meant to be.  I am sure we all have dreams that provide us with impossible situations that we wish were true regardless of who we are.  I could spend a long time analyzing why those dream fairies were so cruel for example but it would probably just come back to say I was broody or that I think too much (or both)!

I don’t shy away from situations that challenge my feelings or emotions, if I did then it would be very boring life and we only have one of them and I intend to live it, but I have learnt, as time has gone on to be more tolerant of it.  Life goes on and I can either move with it and use things like crazy weird dreams as something I forget completely and pass off as one of those fabricated thought processes of mine (and we all know how successful feeling blocking can be….) or use it to my advantage to make a plan for myself – easier said than done of course.

Maybe when I have had more sleep I will try that!

1466031_10152204941983505_8335444069313219488_n

Advertisements

Cleverbug-84cH18$

When I was diagnosed the only internet available was dial up and it wasn’t very good

Now everything is at our fingertips whenever we want it.  Pretty much whatever we want to find out can be found and many of us feel bereft if we don’t have that all important wifi code.   The fact that information is so readily available can be a good thing in many ways but it can also be a bad thing.

When I was 17 and newly diagnosed it was a simpler time in many ways (which I realize makes me sound far older than I actually am, but it was) there were no online support groups and back then if you were lucky in the UK then you were referred to Queen Charlotte and Chelsea hospital (the National centre for MRKH) if you were outside the UK then I can imagine the equally sporadic or perhaps non existent support available.

I remember the hospital at the time ran a buddy scheme, in fact they still run it but its perhaps used a lot less now that people use social media so much more.  I never used it myself (although I am a buddy), I didn’t want to talk to anyone at the time but it was a good idea to get people talking to each other and to share experiences at different stages of their, for want of better word, ‘journey’ – no one can really explain to you how much that helps until you have that.

It wasn’t until maybe 8 or 9 months after my diagnosis that I met someone else with MRKH, the lovely Becky whom I am still friends with all those years (too many years) and so many laughs I am surprised my sides haven’t split, later.  Whilst that might seem like a long time, some people go years, even decades and perhaps never meet anyone else with MRKH.

I felt lonely and confused and scared and upset in that short time, I can’t imagine how that would feel.

As technology has improved our accessibility to everything has exponentially increased  whether that is news, facts, weather, the status of the tube, random quizzes that allow you to fill in the blanks to the words of ‘The Fresh Prince of Bel Air’ or the ever growing way we can interact with people through email, social media etc.  There are now so many different ways to keep in touch with people it can be hard to keep track and it can still feel incredibly lonely.

What is available now in terms of information on MRKH is astonishing.  If you google MRKH or Mayer Rokitansky Kuster Hauser Syndrome or Rokitansky Syndrome so much information comes up originating from all over the world – this in itself can be overwhelming and very difficult to process.   All I had 16 years ago was a very medically written NHS pamphlet which I remember I showed my friends because I felt awkward telling them about it.   How times have changed.

The internet is really a very positive thing for a number of reasons, providing that source of information, that access to support, to charities to blogs from women all over the world designed to raise awareness of the condition whilst echoing subliminally that you are not alone, yet there are still areas to be wary of.

We all know what an unsettled world we now live in and perhaps in many ways the internet has made this more obvious to us than it ever was before – just because we didn’t know about it before doesn’t mean of course that these things didn’t happen.  It is unfortunate, but sadly unavoidable that the internet provides a place for some very disturbing stuff to happen in what should be, or feels like, a safe place.

We are always told, don’t believe everything you read on the internet, but of course we all fall into that trap at times.  How many times does Wikipedia end up with spurious comments or the recent hack of Sony’s twitter page which suggested that Britney Spears had died when of course she is very much still alive.   This of course doesn’t mean everything is a lie on the internet because it isn’t but we do need to be careful because there is a lot of misinformation out there and that can only cause additional stress and upset that is not needed at a time when you may already feel vulnerable.  Always seek professional corroboration rather than relying on everything the internet tells you!

As such, and as with a number of conditions, charities have been set up all over the world for MRKH, some are more active than others but they are designed to help bring people together.  In the UK we are perhaps quite lucky, we are a relatively small country in comparison to say our American and Australian cousins (who are also very active with regards to MRKH support) yet there are many that don’t know the level of support available to them even here.

Blogs are popular as people like me use them as an outlet for their feelings and to share their experiences with others.  The value of that, if you are comfortable with your condition, is difficult to quantify it really is but I would like to think it is making a difference.

Even more popular, and something that makes it easy to reach out to a number of people at once, are the support groups on Facebook.  For MRKH I know of 4 different ones some are international and at least one is UK focused.  I am sure there are numerous others.  I admit I didn’t know until a couple of years ago that these groups existed but I can see from the comments and questions raised that lots of people get a lot out of these groups and there is a general sense of family or sisterhood between everyone brought together not by blood or perhaps a shared love of Ben Affleck (that might just be me) but by a condition, the ins and outs of no one can ever understand fully without living it.

But this in itself poses a problem whilst these groups are private how do you verify that the people in them are who they say they are?  Well the good thing is that these groups are largely run by people who run charities themselves and who do run checks before someone is accepted into the group but in very very rare occasions people can slip through the cracks.

I wrote this blog because this happened recently and whilst I wasn’t affected I think it is important for us all to be cautious with our own cyber safety – particularly if we are in a head space that could lead to us feeling even more vulnerable.

Someone ended up in one of these groups, started posting and and started befriending people within it.  This isn’t uncommon.  When you don’t know people and you are looking for support then there is some familiarity in sharing with someone you (think you) know has the same condition as you.  It turned out that this person was probably a man based on the posts that appeared to get slightly more disturbing as time went on.  Those within the group were warned and of course this person was removed.

But it just goes to show how careful we all need to be particularly when we are feeling upset and vulnerable and sharing private information which we want to stay private.   I know a lot of people within the groups share my thoughts on this and only friend those they have either met face to face or who they feel they know enough about the provenance of e.g they have a blog, they run a charity etc that they are comfortable in having them as friends.  Of course everyone is different and everyone has to make that choice but when you are sharing personal things it is wary to be careful.

I realize I am saying this whilst writing a public blog, but I am comfortable with sharing my condition and my thoughts and feelings whilst I know a number of my MRKH friends are not.

Life is not so simple anymore and reaching out to those you do know to help make you feel more comfortable, or contacting your local hospital/specialist, or attending your preferred support group and meeting some of the faces behind those names (which are also sometimes aliases on Facebook) can not only put your mind at ease but can be the start of long lasting friendships.

We have a very powerful, knowledgeable and helpful community which is there to absolutely be embraced all we need to do is be a little bit cautious as we would (or maybe should) be with other parts of our lives

img_20161129_160626

#focusonyou

 

 

Focus on you

This Christmas break has given me more time to think than usual.  Largely this has been due to a rather more chilled holiday than I am used to.  Not that I am complaining at all, to be honest I needed it. 2016 was crazy in many ways and the last 3 months were non-stop.  It’s been really quite nice to relish the opportunity to sit in my pajamas all day and potter about.

It does give you a lot of time to think which can be good or bad when you have an overactive mind like mine often is.   I have been told before that whilst I am good at focusing on others, those I love and care about, actually I do also need to make sure I focus on me too.

So that is what I am going to do.

I had been looking for another challenge for 2017, the main challenge to follow on from the ‘warm up’ challenge (lol).  I had found one and had roped in my friend Kerry and all was set…except my darling brother booked his wedding on the one weekend of the year that it is run, I am told this is coincidence and not on purpose ;).

It’s one of those things I know but I am not going to lie to say I wasn’t disappointed (it better be a bloody good wedding James 😉 ).  I was at a loss at what I could replace it with as I really wanted to do another challenge, maybe even needed to, for me.

It’s taken me a while but in between a lot of running (and equally a lot of prosecco drinking), eating and present giving I believe I have found a suitable replacement.

I am going to lay it out there now, before someone says this to me, that even I think I am completely bonkers but its strangely exciting to feel like that and I am genuinely enthusiastic about doing this.

The ‘warm up’

As you may remember the warm up challenge this year will be to repeat the London to Brighton in May, yes I know, something I said I didn’t want to do again it’s amazing how quick you forget the pain and emotion of it but I am challenging myself by doing it solo and as quickly as I can do it (without running, sorry Rich) which I am pretty sure I can do <24hours.

The main event

I have thought long and hard about this but I have decided that this year’s main challenge is going to be cycling the C2C (or Sea to Sea) cycle route from Whitehaven to Sunderland this is ~140miles.  A few points to consider:

  • This is a public cycle route so can be done at any time of year, there is no specific event I will be joining, I am looking at doing it late September.
  • I like cycling but I ride a mountain bike on roads and mountains/hills are not my friends
  • I have been known to throw EPIC strops cycling up hills.
  • I have never cycled close to this distance
  • I want to see if I can do it in 24 hours (most do it in 3 or 4 days so this will take a lot of planning and training)
  • But I do however have a great bike already – good start
  • Now I have told everyone I actually have to do it 🙂

Why do I feel I need to do this?

I have this ridiculous urge to prove things to myself and challenging myself gives me some form of inner peace – I am also stubborn as hell and once I have decided something it is very difficult to change my mind.

I don’t want having something like MRKH to stop me from doing something because it shouldn’t.  I don’t mean physically stop me but mentally, the mind has the power to be both beautiful and irritating at the same time and by challenging myself I am channeling those thoughts of anger, sadness into something I can use to not just get fitter but also do something amazing for myself, becoming stronger overall.

I can’t change my situation, I know how much the majority of us would like to but for me anything I can do however small to raise awareness for MRKH is totally worth it and the pride and support I have felt this year has been worth so much more than any pain in doing the event and I look forward to doing so much more this year.

I am not suggesting we all get out there and do ridiculous challenges (unless you want to) but taking those small steps to make a change can be extremely powerful and more powerful than we think but always do it for you, not for anyone else.

“The important thing…is not to win, but to take part; the important thing in life is not triumph, but the struggle.” Baron de Coubertin’s foundational ethos for his modern Olympics