London to Brighton. 100km in 29 hours!

To all of our amazing friends, family and others who donated money to us,

WE DID IT. We walked 100km. ONE HUNDRED KILOMETRES. And for every 1km we walked we earned £40.22 culminating in a massive £4,022 raised for MRKH Connect.

Neither Charlie or I have enough words to express how thankful we are. For every £1 donated, every message of support, every person that came out to cheer us on or bring us sandwiches, and everyone who believed in our lunacy.

We have raised over double what we thought we would, and the support along our entire journey, from blog to finish line, has been incredible.

So thank you, a million times. Your support won’t just make a different to those that MRKH Connect touches, but it will also stay with us for a long, long time.

Lots of love

The both of us xxx

Jen & Charlie’s post-walk debrief

What was your best bit of the walk?

Charlie: Can I say peanuts? But seriously, aside from peanuts it was walking over that finish line, it was the most incredible feeling, the emotion had been building, well for 100km it had, but to finish just felt incredible, I was so proud, bloody tired, but proud and very overwhelmed

Jen: The finish line. There were so many wonderful, fun and funny moments in those 29 hours, but nothing can beat the feeling of crossing that line. 29 hours and 19 minutes after you started, tired and beaten up but so incredibly proud.

What was the worst bit of the walk?

Charlie: The nighttime, that period from the 67km stop to 80km was just awful, worse than awful. Nothing prepared me for walking in a wood in the dark after already having walked for some 16 hours. The pace was slow, my muscles were ceasing and the endless 13km which took over 4 hours seemed never ending.

Jen: 67km – 99.9km. I’d love to sit here and say ‘it was all amazing’, but the hamstring in my left knee gave out at 67km and after that I was progressively using my walking poles as walking sticks. At 90km the right knee went and I was alternating limping for the last 10km. It was some of the most pain I have ever been in, the most pain I have ever pushed through. I wasn’t giving up, but that f*cking hurt.

Were you ever tempted to give up?

Charlie: Never, even at the 80km breakfast stop where we sat the lowest we probably felt the whole walk, despondent and force feeding ourselves porridge. I always knew we were going to do it, not sure in what state or how long but we were always going to get to the end.

Jen: No. I was getting over that finish line if I had to crawl. Knees or no knees.

What did it feel like crossing the finish?

Charlie: Like I had opened the emotional flood gates, I cried a lot. It was quite indescribable to finish I couldn’t at that point get my head around the fact we had walked for so long, so far and my family were there at the end, so proud. Really was incredible.

Jen: The first thing I said to Becky as I collapsed on her was, whilst crying, ‘that was a really long way!’. It felt surreal, and amazing, and ridiculous. There were really no words to describe it, so I think I just talked a lot about how far it was. Because I think that’s what you get stuck on – ‘I can’t believe I just did that, did I just do that?’.

What were the things that got you through it?

Charlie: peanuts, marmite sandwiches, hula hoops, the endless support and messages all day/night, Jen selfie bombing, Justin Timberlake, sheer grit and stubbornness not to give up when it felt so hard we wanted to cry and of course each other

Jen: The absolute and indubitable knowledge that I was going to finish whatever the cost. That resolve really can get you places. Also, the small luxuries. Yummy snacks, changing socks and clean clothes at 56km. The people that came out to surprise us that gave us a boost to carry on during our low moments. My walking buddies.

Would you do it again?

Charlie: No, not because I hated it (although I can’t say I enjoyed all of it at the time) but because I want to do a different challenge now 🙂

Jen: I loved it. If you want to do it, you should definitely do it. Train though, A LOT. But no, I am not doing it again any time soon. I want to focus on different challenges. But you know, never say never.

 

 

 

Did we pass a km marker? I am sure we must have

To walk over that finish line was the most indescribable feeling, the emotion, the achievement and the sheer grit and determination that got us there. Seeing my mum standing in the middle of the finish line so proud was just a wonderful feeling, I’d spot that coat a mile off almost as distinctive as my offensively bright leggings  but I wouldn’t have changed that moment for the world.

Things that got me through the walk

• The reason for doing it – In many ways I needed no better reason to get to the end than the cause we were walking for and the condition we all share
• The shoes – no blisters, no strapping for 100km now of course I am sure the training helped but the shoes were awesome. So awesome I am sad enough that I emailed Hi-tec to tell them how great their shoes were…and I got a response. 🙂
• Peanuts – I just like them
• Laura’s head torch – without which when Jen’s broke at 2am we would have been a bit stuffed. The headtorch that I am pretty sure could be seen from space was an absolute godsend, even if it did mean I was at the front ‘finding’ the swampy mud bits before Jen and Laura
• Shelley’s letters – these made me cry before the walk, just as I was about to embark on the nighttime section (always embarrassing when I read that one in front of her brother) and then at the end. Your support and your calls at random times (despite being on holiday in the sun…not that I was jealous at all) were a really awesome boost. Love you
• My goddaughters pledging their pocketmoney – this made me cry at about 5km, I am sure however when I next see them I will get the same question I have had from other little people in my life – ‘but why didn’t you just get the train auntie charlotte?’
• Cheese and marmite sandwiches – The best sandwiches known to man, ever
• Banoffee Pie – the local support was amazing and the house somewhere in Sussex who were offering banoffee pie totally won the award for best local 🙂
• Double socks – oh how people laughed, and it probably did contribute to my heat rash but it worked 🙂
• The endless messages of support at all times of the day and night – you guys got me through, thank you to Rob who was ready to give me a pep talk at 11.30pm if needed, although I decided not to take my friend Ondrej’s advice to ‘break a leg’
• Surprise visitors along the walk – you know who you are and it was awesome thank you
• Laura and Jen – we did it together and for something so important to all of us…I couldn’t be prouder

It was by far the hardest thing I have ever done, much much harder than I imagined, the physical strain of walking for so long as well as the mental will to keep yourself going, even in the dark, when most of the paths are single file was quite frankly horrific.

When I signed up to this I initially thought, walking, well that can’t be that hard right? But I quickly realised that whilst very difficult to train for because endurance walking takes a physically long time.  You absolutely do have to train, you have to condition your muscles, build your stamina and endurance, and soak your feet in surgical spirit to harden the skin and prevent blisters – I’ve got great ‘summer feet’ right now.

The feeling at the start is something in between excitement with a tinge of trepidation. Spirits are high and those first miles seemed to fly by as we talked through all the gossip we had been saving up for the walk. Passing many people along the path to Kingston who kept saying ‘I wonder what they are up to, there must be an event on’…no shit, what gave it away the rucksacks

with our bib numbers on or the fact there were literally thousands of us doing the same thing?

In any case the first quarter seemed to go quite well, I saw parts of London and the suburbs I have never seen (that could be considered good or bad). My friend Andrew timed it perfectly for a quick hello as he cheered us on through Nonsuch Park and then we were on to Oaks Park for our lunch stop where I was the first of us to require the medics having taken my shoes and socks off to find immense heat rash on my feet and ankles. Now I was prepared for this a

s it happened the weekend before but still even preempting it with antihistamine hadn’t stopped it happening.

As we left the urban jungle at Coulsdon and started to go over the downs it was hot, like really hot, but we started to see greenery (yay) and hear the dulcet tones of the M25 (always a delight). We soon realized that there were actually a number of stiles on our route…and not just a few, someone told us there were 56!! I am sure there wasn’t quite that many.  We did start counting them but that got pretty dull quite quickly. It was interesting that when people have already been walking for many hours getting over a stile is, it appears, frustratingly slow.  Watching people so tentatively getting their leg over the stile was tedious to say the least but just shows how used to a certain motion your legs get into.

Arriving to the half way point at 10pm, in the dark, borderline requiring head torches (in fact we probably should have as woods are really quite dark) it was a relief to see our family and friends and have a much needed hot meal, get some hydrocortisone cream on my heat rash (finally) and prepare for the onslaught of the evening. None of us had any idea what walking in the dark, through woods would be like. I can tell you now I really didn’t like it very much, in fact it was horrible. We set off glow sticks in hand and head torches ready but nothing really prepared us for it – I am not even sure a training night walk would have helped, unless it had also been in a wood.

About 1.30am Jen’s knee, which we knew was dodgy, gave out.  In fact both knees weren’t having the best time but after that point the pace slowed, coupled with Laura having some horrible blisters the next 10km…which took 4 hours…..in the dark…largely in single file….with only 2/3 head torches working…..were easily the hardest of the whole walk. Whilst I didn’t have any ailments per se the stopping and starting and slow pace was making my muscles cease up and I was really struggling to will my legs on. We arrived at some school in what I am sure is a pretty village somewhere about 20km north of Brighton about 6am, by this point I think its fair to say we were all rather despondent, tired, in pain and the prospect of even daylight wasn’t lifting our moods. We sat in that tent on a massive table not talking to each other and trying to make ourselves eat the porridge that was in front of us. It was a low point, I am not even a massive fan of porridge but the prospect of bacon (which was also on offer) made me feel sick.

Then we had a massive energy boost in the form of Jen’s sister Louise and Louise’s brother Richard. Louise and Richard having completed the 100km the year before knew how bad it can be, Louise felt every ounce of pain that Jen did at that point having been injured herself last year and that positivity from them not only that we could do it but that they would take our bags off us and drop them at the end (which was an amazing feeling by the way) and walk the next 10km with us to get us up Ditchling Beacon.  This filled us all with an overwhelming sense of joy and relief, the boost we absolutely needed. With extra support for Jen and Laura I was also able to stretch my legs out walking to the next stops at a faster pace and waiting for them with Richard without them feeling I was having to keep stopping and with me being able to stretch out my aching muscles.

At 90km we regrouped, the three of us, back on the path for the last 10km, whilst the pace was slow the reality that we only had a few hours left and we were there was the boost, the motivation to keep going. The family whatsapp group I had set up being used almost continuously by my parents at this point to find out where I was, mum got obsessed with location pins which for a large proportion of the walk seemed to keep telling them I was in Teddington.

At 92km I had a message from my brother asking where I was, my family waiting at the end enjoying the sunshine. I had no idea that he would come and meet us, I didn’t think he would even make it to the end as we ended up being later than we thought.  But he did, resourceful as ever (lol) he found the nearest rest stop to us and worked out about how far we would be away from it.  I am genuinely impressed by this particularly given my brother is notoriously shit at geography so I am surprised he even made it to Brighton (its near Bath right bro?) and I have never been so pleased to see his smiling face shouting to me as he walked up this stupid uneven path down from the beacon. He ended up walking 8km with us coordinating with my boyfriend too who couldn’t make it to the end but surprised me by joining us for a couple of km – James I owe you that was literally awesome.

I have never been so pleased to see the end of anything, the endless ‘its just around the corner’ did get rather tiresome and given a lot of the rest stops weren’t quite at the km mark that we were being told it felt like the marshalls were lying to us.  Seems stupid but when it gets to the point that the main way we were measuring time was in km the excitement to get to that next marker was what kept us going. That great feeling seeing the pink square signs you knew to be km markers only to find out they were in fact hazard markers, often with no obvious hazard, were becoming mightily frustrating. That last bit…on the grass of the racecourse walking to the end we were all on the verge of tears, Jen also because her knee was spasming by this point, my dad meeting us with about 50m to go before running back to meet my mum.

I collapsed on my mum in tears that I couldn’t stop, I think my mum was crying too, it all seems a bit of a blur. It was the relief and happiness that we had actually done it and I didn’t have to walk anymore plus I knew my mum had sausage sandwiches (she could have fed half the racecourse) and champagne for me :).

I always knew I would complete it but nothing quite prepared me how amazing that feeling was. My aunt and uncle also coming down to the end and I apologise to my uncle Mike when he asked me ‘how was it’ and I replied ‘f***ing horrible’ that was just the emotion…I promise 🙂 but thank you for going to retrieve my tshirt and other free things at the end whilst pretending to be Charlie Bishop.

We have raised more awareness than I ever thought possible, we have raised so much money (£3,761) for a cause designed to help connect people and get them to the much needed support groups and I couldn’t be prouder or more overwhelmed by what we have achieved. Whilst the best foot forward challenge is over and Jen and I put this blog to rest, the awareness raising doesn’t stop and I rather enjoy blogging so I will continue to do so under https://mrkhmakingmymark.wordpress.com so watch out for more posts 🙂

Thank you doesn’t really seem ‘enough’ to say for all the support we have had but thank you, it has been incredible and something I really will never forget.

THIS was more important than fear and we only went and bloody did it 🙂

love you all

Charlie xx

 

It’s the final countdown… na na na naaaah…

For the past week I’ve been singing this in my head. Constantly. I wake up humming it. And what makes it even worse is that I don’t know any of the other lyrics.

I’ve been approaching Saturday with a vague sense of hysteria. From bouncing around in my chair at work to staring out the bus window with a mild sense of fear..

What if I trip on a pothole on mile 3 and break my ankle?

What if my hamstring tendon finally gives way?

What if my sports bra breaks?! (No really, this happened to my sister).

But broken bones, ridiculous fears and pre-Christmas style excitement aside the day is almost finally here. Charlie and I are packed and ready to go. No more training, no more planning, no more blogging.

Just a whole lot of walking.

100km to be precise.

I didn’t know what to write in this last blog before the big walk. I’ve said my thank you’s, although I’m sure I’ll be saying more in the coming days. I’ve told you the whys and what fors, I’ve talked about my feelings on the internet, I said the word vagina on and off the television and I posted a photo of my dad in a bowler hat. So what’s left?

In pondering that question, I came across a poem written by a lady in Australia with MRKH.

Her words touched me, and I wanted to share a few verses with you before Charlie and I set off. Proud to be walking for those with MRKH with our very best feet forward.

Jen x

 

I am not broken,

My body does not need

To emerge

From a cocoon.

Less tarnished

And more beautiful.

 

I am not a fighter

A warrior battling foes

Praised because

She survived despite

Her never ending woes.

 

I do not need pity

When I tell my story

Or my path to be

Paved with delicate china

Filled with weak tea of sympathy.

 

I am not over emotional

Unable to stop my voice

Before it ruptures the truth.

I speak my dignity like a

Sword slicing through flesh

And I am proud.

 

 

 

 

 

 

 

Courage

Courage is not the absence of fear but rather the judgement that something is more important than fear; The brave may not live forever but the cautious do not live at all

Meg Cabot, author of The Princess Diaries.

 I would like to thank Steve for the inspiration for this blog. Who sent me the above quote a while back subsequently telling me I personified courage. He is clearly an avid reader of The Princess Diaries or a fan of the movie, or just the lovely guy I know him to be, or all of those things, who knows. Steve, this one is for you and for the delight it has given me that I have inspired your daughter with what I have been doing :).

Lots of people have said to me how brave and courageous I have been over these last few months to share such personal things in such an open way. In many ways I have never really seen it as being brave or courageous although it probably is, that’s not to say that like Jen on that cold October afternoon I wasn’t quite frankly shitting myself when we hit ‘Go’ on that first blog and the posts that we subsequently shared on Facebook but it was more anxiety / excitement about the response than braveness to actually do it. I have wanted to be open with the condition for such a long time but just hadn’t found the right way to do it. The right way to share my thoughts and feelings and ultimately try and help others to come to terms with the condition.

I have gone much further than I ever thought possible since Jen asked all that time ago if I would join her on this mental challenge to walk from London to Brighton. Not only has it brought us closer together but I feel that we have done something truly amazing, if for no one else then ourselves. The start of the blog for me has made a massive difference to how I feel about myself I have a sense of pride and empowerment with being able to share my feelings in this way even if I am the only one that ever reads them. I have been able to engage and interact with my family and friends in a different way than before.  Its come up at conferences when some people I have been talking to have asked about how its all going and others didn’t know and I have explained what I have been doing and why, I never would have been so open about it in that context in the past. I have been able to reconnect with people I haven’t spoken to for years because they have been able to find something in my writing that has either touched them or made them want to share their stories with me. It’s amazing what you don’t know about people and this blog has highlighted that specifically for people who maybe thought they knew me but didn’t appreciate all that goes on in this crazy head of mine and what it has taken to get to where I am today.

I am not ashamed to say that there have been some bad times, some really shit times to be honest but I got through that, I had to because that wasn’t me and I didn’t want to feel like that but you have to be able to realize that you are in that position, that it does happen, maybe more than once in your lifetime and that there is support if you are willing to find it. Being able to share my experiences and support a cause so close to our hearts with such a wonderful friend IS that important thing to me. Together we have pushed each other, consciously and subconsciously, to go that extra step on our respective journeys through life.  During the last year there have been many many whatsapps, much wine (sometimes foolishly on a schoolnight), emails, lengthy calls as we laugh and sometimes cried our way through the moments of the last year.   I am cautious about so many things in life but this for me was never something to be cautious about. If I was cautious then it either wouldn’t happen or it wouldn’t be true to me which is exactly what I wanted it to be. This blog for the most part was a way to document my feelings in a way I hoped to educate others as well as provide help and support to people going through the same things to show that life can actually be ok despite being hit with a bombshell like this in those scary teenage years.

Over these last few months I have walked further than I ever have done in my life, I have injured myself in ways I never actually thought possible (bruise caused by iPod to the back of the knee, really?) but I have explored parts of where I live like I never have before (probably a good and bad thing). Whilst for the most part I mainly walked alone the combination of dance music, waaayyy too much Justin Bieber and One Direction, singing (when no one was around) the right snacks and the constant thought of why I am doing this have helped to pull me through.

I have accidentally walked to Ash, I have walked around Woking more times than is probably normal, I have walked in the Surrey Hills in the sleet and freezing cold in January where I ate a Cadbury’s crème egg at the bottom of Leith Hill Tower whilst shivering at -5 degrees barely able to hold it long enough to open the wrapper to lastly, the pre-challenge tip of the iceberg I walked from my house to Waterloo station.  London it turns out is a really rather long walk, 30miles in fact but I got to take in some sights like Hampton Court, Kingston (that’s a delight on a Saturday morning I can tell you), Putney, Battersea and the London skyline along the river but I have never been so pleased to see Waterloo in my entire life, I nearly cried and I can now only imagine the elation and emotion I will feel when I get to the end on Sunday, because I will get to the end, we will get to the end Jen. We are in this together and I am so so proud of what we have both achieved and so thankful for all the support from so many people to help us to get there.

I can’t possibly thank you all in a fitting way through this particular blog (unless it was several pages long) but know that it will come and that I love you all very much. I am eternally grateful for your support and help whether you are my family, friends, colleagues, ex-teachers or even clients I cannot explain how important your words and support have been.

This is not the end of the blog for me, this is only the start. It’s been the springboard I wanted to start raising awareness and I have every intention of continuing it.

THIS is more important than fear

See you on the other side….

Love Charlie xx

You can follow our walk progress at the weekend via:

• The blog
• Instagram (@charlieabishop)
• Facebook
• Twitter (@Charliebishop84)
• #bestfootforward
• #bestfootforwardmrkh

1 week to go… time to thank a few people.

I’m walking 100km next week. And I am really excited.

I’m excited to strap my boots on. I’m excited to get started. I’m excited to be part of something, to walk next to one of my best friends for something we both truly believe in. I’m excited for the great moments, and for the really tough moments.

I’m excited for the moments we show ourselves what we’re made of, when we’re faced with the feeling we can’t go on, and keep putting one foot in front of the other anyway.

After a year of planning this really is the final countdown to what will be the biggest physical challenge of my life to date. I’ve climbed the Inca trail, trekked mountains in Africa, bungee jumped with a fear of heights, dived with sharks, been through dilation treatment (!) but this is by far the toughest thing I’ve ever attempted.

And I cannot wait.

But the 100km that I’m walking next week is only a piece of this journey. It began almost a year ago to the day as I stood in a field in Sussex waiting for my sister Louise to arrive at the London to Brighton half way point.

As I stood waiting, I found the atmosphere of it all intoxicating. I wanted to be part of it. The cheers of encouragement, the live music, the sheer hard work and perseverance that was so clear on the faces of everyone crossing the half way line. Half way! These people still had 50k to walk. Through the dark! Through the woods!

Nutters.

Or were they?

A year later and here I am. Ready with my very own walking boots.

And all this time I’ve been referring to the walk itself as the challenge, but really the whole journey, right from that moment a year ago to this day, has been part of the challenge too.

From recruiting Charlie and partnering with MRKH Connect, to creating the blog and publishing our first story on Facebook – they were my first steps. And some were easier than others.

Getting Charlie involved with surprisingly easy. All agreed over Whatsapp, I expected a little more of a fight – but, as it turns out, she’s just as nuts as me, and as the other 2,500 people that attempt this each May.

Putting our blog on Facebook, sending that very first story out into the world – that was far more nerve wracking, and I can tell you, my hands were shaking as I pressed ‘publish’ that very first time.

It’s turned out to be a journey full of firsts. For the first time in my career I’ve been open about MRKH at work. In January I went to Sweden with the BBC to interview the team behind the first successful uterine transplants. I started running, (running!), walking, gym-ming, trampolining – I feel strong, able, fit.

Fit! And I love it.

I have loved so much about this road to our 100km. I’ve done so many things in this past year that a decade ago I never would have thought possible.

So before I start the final piece of this journey I want to say a big thank you to all of those people who have been with me along the way, without whose encouragement over the years I would not have got to the start line, let alone the finish line.

To Charlie, who agreed to walk the walk with me. Who thinks I’m mental but who likes me anyway. You are my partner in crime, and my designated map-reader.

A truly heartfelt shout-out to Becky Glass who I just adore, and who has accompanied me to every MRKH meeting in years. You have been my wise words and my most trusted confidante for over a decade. There aren’t enough words to tell you how lucky I feel to call you my friend. Above everything else, above the support, the fun, the laughter, the dancing and all of the memories – you simply get it, you understand. Thank you.

To Jane, who has a heart of gold and who has been my biggest cheerleader. For always, always being there when I needed a friend. Every girl needs a Jane in her life. I get to be the lucky one!

My parents. My Dad who gave me a love for music that carries me through the toughest moments. My Mum who raised a girl who keeps on going. For always being there at the beginning, at the half way-point, at the finish line.

My big sister Clare, who sat with me on the bathroom floor that first night after diagnosis and has walked beside me every day since. Who is always there with a life-pause button, an 80’s playlist and a bottle of wine.

My bigger sister Louise, who has more grit, more courage and more determination than most people. For always giving it to me straight, and for always offering me refuge.

Nathan, who opened the doors to exercise and always encourages me to keep going. For helping me see what MRKH brings to me, and for being the first person to celebrate it. For pushing me forwards, even when I push back, and for always trying so hard for us. You are the voice in my head that makes me train when I want to sit in my pyjamas.

To all my friends and family who have been there along the way. Life has bumps and potholes, and MRKH hasn’t been the only one, but it sure was a bit of a bumpy ride for a while. I am so grateful for all the hugs, the listeners, the encouragers, the friends that got drunk and danced with me, the ones that ranted with me over tea, and to the people that were just quietly there if I needed them.

Because of you this journey has had far more light and laughter than difficulty. Because of you I know that no matter what happens I will always keep going, because I have the strength of an army in my corner.

I am so grateful for you all.

Thank you.

Jen x

We are family

I am very lucky to have a family like mine. Our relationships might be quirky in part but I couldn’t hope for anything else. You might look at the 4 of us and think happy family, long marriage and two wonderful (I might be biased) children. We always had a good relationship with our grandparents growing up and our aunts, uncles and cousins this has extended into adult life too. I spend a lot of time with my cousin Hannah for instance which even when you don’t ‘have’ to see each other shows that we do actually like each other, get on well and support each other etc. That doesn’t mean there aren’t underlying family problems.

I always thought we were a close family growing up and in many ways we are, but just not in the way many of my friends’ families are.  We have never been very open about feelings, we didn’t talk openly about personal things. I would at no point go to my mum and share my boyfriend woes or issues with MRKH or anything that was remotely personal. I have probably talked more to my aunt about those things than I did my mum. We just didn’t do that. I don’t resent that at all because that’s just the way it was. The way of dealing with these ‘taboos’ was to be rather jokey (not in a maliciously intended way) and then they wouldn’t be talked about again for a while. I don’t feel like I missed out on anything because of it but it was contrary to what I know a lot of my friends were doing who were very close to their mums. My mum was always the one with the hard exterior, the strict one. The one that if you wanted something, a lift or whatever you would go and ask Dad, who would often then tell you to ask Mum first. My Mum is a complicated person on many levels but undeniably loveable particularly now she has found her inner soft and squidgy side and for the first time in 32 years I saw her cry…in public. My Dad on the flip side is the quiet one (until a ‘megadrive’ incident occurs, which is awesome), the passive one the one you could always go to for a hug, not that we often did but still we often wouldn’t confide in our parents about things, it just wasn’t what we did as a family.

My brother, James, and I have almost always been close with only 18 months between us we spent a lot of time together as children and apart from a period of a few years in our teens when we didn’t get on and we used to argue a lot and fight we have always got on pretty well. My brother the loud, impulsive, most laid back guy you will meet who used to be this shy little boy who wouldn’t say boo to a goose, has a heart of gold and I have always been able to rely on him, when he answers his phone that is which is easier said than done at times. On a serious note though he has always been supportive of me, will give advice where he can and likewise I do the same for him. He and his girlfriend Izzy have dropped plans to make sure I am ok and I am very very grateful for their support.

More interestingly, and something I only really thought about yesterday, is that each of us have incurable medical conditions which are completely unrelated to each other.

For the most part, none of these conditions are visible but they are still serious in their own way to us or indeed medically and have impacted our lives personally as well as had an impact on the family either now or in the past. We probably won’t ever understand the full impact of our conditions on each other, in some cases the impact is pretty minimal because of the nature of the condition but we know that we are there for each other. Whilst we deal with these situations in very different ways I think this has also become much easier for us as a family over the last few years as I feel we have become more connected in an emotional way than we ever were before. Whilst I don’t like to blow my own trumpet very often I think the blog has had a massive impact on being able to talk to my parents about MRKH and for them to be able to engage with me on it as well.  Its been nice after all these years to have those types of conversations together without the awkwardness.

But really nothing has highlighted this improved closeness than recently where the family has pulled together for the legend that is my Dad as he fights with an auto-immune condition which he was diagnosed with last year, the severity of the symptoms we certainly hadn’t comprehended (largely because the parents thought it was easier not to tell us) until we finally learned what it was. My Dad, one of the happiest, kindest most amazing people you will ever meet has found it very hard to come to terms with his condition not least because the medication he has had to take has had not only varying effects on him but also has had various amounts of success with trying to manage the condition.

It just makes you think that having that support is really vital. My Dad isn’t the lay all your emotions out kind of guy which is odd because I have seen my Dad cry many more times than my Mum growing up but I think when its something personal to you its different. You close in on yourself a little because you just want to try and get on with life despite the pain, anxiety or stress that its causing you. When you are already trying to deal with something and then there is added stress as well that can make things much harder and only prolong symptoms further as you try and take on too much, something my parents have been telling me for years I do although in reality I think my Dad wins that award hands down.

There is a period of acceptance that comes with any condition, that might be quick in some cases and for some people because of their character or on the flip side because of the condition or the person, it may take longer. There is no fail safe way of in X [days, months, years] you will feel better. Life doesn’t work like that but being there for each other or having those people to turn to is vital to helping you on that path.

A lot of girls who have MRKH class each other as family, sisters connected by the one condition we all share. The only ones who can truly understand what the other is going through. That family is different, again not the conventional type and certainly no blood relation but that doesn’t make it any less important. There are a number of these women I would undoubtedly have never met had it not been for MRKH but I am so grateful for that support network. In a similar way friends can be family, close friends are invaluable. I can go to my best friend’s house (or her parents house for that matter) and feel completely at home. There is no pretending to be something you’re not or forcing a conversation, its just natural. My closest friends aren’t blood family but they are family to me in so many ways.

You can’t choose the family you are born into but it’s important not to lose sight of what we do have in whatever form that comes and how we can use that to help us as our friends and family use us to help them.

Love Charlie xx

What if he told you he couldn’t have children?

An interesting concept and something that has come up in the Facebook support groups recently. What would you do? Does it make you think any differently about him if he can’t have children? Would it make you not love him, not want to be with him and not want to try and find a solution if you both want children?

I don’t know about you but It wouldn’t make me think any differently about him. In many ways I have found this a very recent good reverse psychology approach with MRKH. Flipping it around to see whether I would feel any different makes me realise that it shouldn’t matter to that other person, if they are the right other person.

I want children, that’s no secret. I don’t know how that will happen really but I know I want it to happen more than anything. It’s unlikely it will be via IVF for many reasons but adoption is an option and something I am quite fond of in terms of giving a child or children a safe home. It’s not something I am really in a position to think about right now but it is something I have thought about and would like to pursue further. I go to fertility exhibitions and things like that to try and get some more information for when that moment happens.

If the shoe was on the other foot would he do the same? Who knows. But I know I would support him through that. I would be there at the support groups. I would be there at the appointments and I would be by his side. It’s important to realise that we are all strong women but that having the strength of our partner or our friends to help us is also vital. Would we think our partners were weird, abnormal or any of the names we might have been called in the past? My answer at least would be, No.

Us females have a tendency to be ridiculously and unnecessarily bitchy whilst males are a lot more private about this type of thing, from my experience anyway. It’s not often I say this but we should probably take a leaf out of their book a bit on this one.

This blog has been great for me personally but also has provided me the opportunity to engage with people in a way I often don’t or wouldn’t get the chance to do. Life is shit for a lot of us just because we portray ourselves in one way doesn’t mean we are that person. One of my colleagues, new to the blog, commented to me that she had no idea I felt like I did and had no idea that I was a worrier because I always came across strong and bubbly and in her words ‘never short of a boyfriend’ – that’s probably not a good perception but still I see her point. It’s amazing what goes on behind the facade that we don’t know about. Lots of us hide our true selves maybe that’s for self preservation or just because we feel we have to. I’m a strong person, with problems. But nothing that can’t be overcome in some way in my opinion anyway.

If he had the problem would you hold him tight and tell him you would be there for him? I hope so, I would. I have only ever wanted to feel safe, to feel wanted and to feel loved. That’s normal right? If he was the one with the issue and struggling as I have struggled I guarantee he would want that too. In fact most normal people in the world would want that, because who doesn’t want to be loved and looked after?

I hide my pain at times because I don’t like feeling sad I hate feeling sorry for myself, but it happens. I know how to manage it now much much better than before but there are still nights I literally just cry sometimes for no reason, sometimes because I just feel sad but it’s ok because when it’s over it’s over and I can get back to being me. I’m not very good at being sad, I’m better in that I can now show emotion more readily than I used to rather than relying on watching Armageddon to guarantee a cry fest but still.

There are many parts of me that might exude confidence but in reality I’m a little scared mouse who like lots of us is still just trying to find her place in the world one (many) step(s) at a time 🙂

Charlie xx

The eternal pessimist

Optimism: hopefulness and confidence about the future or the success of something.

Pessimism: is a state of mind in which one anticipates undesirable outcomes or believes that the evil or hardships in life outweigh the good or luxuries

I thought until very recently that being an eternal pessimist was a good thing. That way I could never be disappointed. Then one of my friends pointed out to me that whilst I was definitely a pessimist that it wasn’t really a good thing. Why? Because in some ways it meant I could never really be happy. If I wasn’t able to be optimistic sometimes I wouldn’t be able to draw any comparisons to things when they were actually good and worked out well.  I’d just be constantly disappointed that I was always right to be pessimistic.

I guess MRKH has made me pessimistic (maybe I already was?) in the sense that i have felt that if I talk myself down more, expect things to be bad or go wrong then I won’t be surprised when they do. I’ll still be annoyed, sad, maybe anxious, but I won’t be surprised. I guess I always expect things will go wrong because I have had bad things happen. The disappointment of being told you can’t have children (and no, one of your colleagues telling you he’s sorry to hear that but it’s ok because his wife hated being pregnant was not helpful), your friend dying, men being prize dickheads at various times and being told even though you have a genuine medical condition which means you can’t have children naturally the NHS would rather spend money on other things than help you is shit.   It’s therefore been easier to be pessimistic because being optimistic just leaves me open to hurt more, and whilst i know I’m strong i don’t know if I can handle it. This isn’t a sympathy post by any means life is shit for all of us at some point and to varying degrees.   C’est la vie.

Do you know what? I might be an anxious, worrying, strong, stubborn, irrational, pessimist but that’s ok (kind of). But I am much stronger than I think I am and I should have more courage in my convictions and it probably takes an optimist to do some of the things I have done recently, like this blog and raising awareness. These situations have been a test but ultimately have made me stronger sometimes it takes things that test you for you to realise what you are capable of and what you can adapt to. I had a conversation yesterday which made me think…MRKH is classed as a genetic mutation, a syndrome, but they don’t know what causes it. In reality you hear the word mutation and it sounds bad, unless you are a super hero, which sadly I’m not (I suspect I’d be a very clumsy one). I personally hadn’t ever really thought of it in a negative way but I know lots of girls do and discussing it last night made me think. It’s not a helpful way for people to come to terms with the condition and understand it if it’s described in that way. Mutation has other synonyms like ‘freak’ which doesn’t do anyone any favours in terms of trying to come to terms with the condition. It’s sadly just something that happens tagging it as a ‘mutation’ just isn’t helpful. As we are often teenage girls when we get diagnosed we have enough to deal with without also being considered freaks.

I spoke to someone recently at the support group and she had had a terrible experience with MRKH. She was from Hungary and the medical support there was very limited the surgery she had to endure sounded damnright painful and demeaning and she had no one to talk to about any of this. My heart went out to her. She was surprised I spoke so freely about it as she had always been told that it was a ‘dirty’ thing to talk about so never had. This poor woman in her late twenties had literally never discussed this, never been to a support group couldn’t comprehend how to tell anyone other than other MRKH sufferers.

She asked me what my secret was as I was talking rather openly and rather a lot (I know right, who would have guessed)

What I told her was that it’s about acceptance, I may be a pessimist but I’m also (largely) a realist. After 15 years I I have accepted my condition, there isn’t anything I can do about it so I have to accept it or be a miserable grumpy person for the rest of my life and I’m not really very good at that and I rather enjoy smiling

She asked me how I told my boyfriends…this is tricky with other MRKH sufferers because everyone is different how they want to handle that more sensitive part of their acceptance is down to them but when I told her how open I was she looked at me aghast (awesome word) thinking I had gone nuts (no difference from usual then). Like I said last time I have always been one for being honest and upfront. I’ve always found that easier although that’s taken on a whole new level now after announcing it so widely – so I am probably a lot more optimistic than I think I am. I want to be able to help people like her, whether it’s a glass of wine after a support group meeting to discuss experiences or do you know what actually have a conversation not about MRKH, build a friendship and realise life isn’t all about MRKH (coz if it was then it would be shit).

This walk, this awareness, what Jen and I are doing, is for people like my new friend, at whatever stage they are in coming to terms with it all.

Pessimisticness (daddy that ones for you!!) is a state of mind. I’m a lot better than i used to be (honest I am, even if the messages to many of my friends before I got on this endless flight of doom may not have suggested that). It’s ok to be like that but I can’t live my life permanently like that otherwise I’ll never be truly happy. I need to be realistic yes but that doesn’t mean I can’t show a little bit of optimism now and then. Some confidence in what I do and what I am capable of is important. To be honest there have been many more times those situations I have been pessimistic about have actually turned our well than not well so it’s really about me being a little more realistic. Some situations require optimism…some perhaps justify pessimism or uncertainty but mostly you have to take things in your stride and adapt as best you can.

Charlie xx

We Are Not Alone : National Infertility Awareness Week, and an 18-year old’s scrapbook

This week is National Infertility Awareness Week, or #NIAW. Started as a US movement in 1989 it took 21 years for it to be federally-recognised as a health observance by the Department of Health.

To me, that length of time is indicative of the lack of awareness problem that we face. In my experience there is often an indifference towards infertility that I find surprising given the statistics.

According to Cancer Research UK 1 in 8 women in their lifetime will be diagnosed with breast cancer.

Similarly, 1 in 8 couples will be found to be infertile.

Indeed, NIAW have adopted the #1in8 slogan this year to try and get across the sheer size of the problem. So often it seems like this health issue doesn’t affect many people, it happens to the unfortunate few, the friends that you feel sorry for, but infertility is broad and touches many. Indeed, chances are some of you reading this article will be touched by it in the future – the sad fact is, you may not know it yet.

My point is, infertility matters, and we need to talk about it.

Thanks to celebrities opening up about their own stories in recent years, infertility has certainly received a lot more media attention, and I’ve been pleased to see comparably a large amount of stories about MRKH in the press compared to when I was diagnosed 11 years ago.

But the infertility community still has a long way to go in terms of awareness, education and support. I’d like to see it included as part of sex education at schools, I’d like to see it talked about openly, I’d like to see an increased awareness in GP surgeries, and a better sensitivity amongst medical professionals.

‘You don’t have a uterus? Wow, hang on, let me Google that, wow how fascinating…’

• Unnamed GP in Clapham, 2015.

Barb Collura, President and CEO of RESOLVE, the organisation behind NIAW was asked why understanding infertility matters:

‘When more people understand the impact infertility has on people, we will finally see real change happen. For us, we want to see infertility covered by health insurance like any disease, we want to see more empathy for those living with infertility, and we want to see more awareness and education. If moms everywhere raised their collective voices and pronounced that people with infertility matter, we would finally see that transformative change we so badly need.’

Collura’s statement that ‘people with infertility matter’ is a powerful one.

One of the most emotionally challenging aspects of infertility that I have experienced has been dealing with the (false) notion that I am somehow a ‘failed’ woman. As a newly diagnosed 18-year old I felt very alone and confused. I felt isolated in this thing that was happening to me, but not to anyone else. At 30 I desperately want to challenge that notion and to rid us of that stigma, so that future girls affected by MRKH or any other infertility condition will feel able to speak about what’s happening to them from the very beginning.

For several years now I have known that to see these changes in the world I need to be a part of that change, and to do that I have to be willing to open myself up and to share my own experiences. I know that I can’t expect to spread a better understanding without saying ‘look, this is what it’s about’.

Before I started Best Foot Forward I was worried about being one voice – what difference could I make? Why tell the world about something so personal if I can’t really make any difference? But then I had Charlie, and so we were two voices, and we made each other brave. Slowly, I hear more voices in the world – there are MRKH groups in Australia, India, Europe. MRKH Connect is helping to map sufferers from all over the world – to show us that we’re not alone.

Our community is a big one, and it is growing, but I’d like to hear it talked about outside those who are directly affected. That’s the goal. Infertility matters. And it matters to all women because it helps validate the very real, very painful infertility experiences of their fellow sisters, friends, daughters, co-workers, and more.

Earlier this week I dug out my old scrapbook. It is a diary of sorts that I kept from the point of diagnosis and in the couple of years afterwards. In it I was able to represent how I felt, pour out my own emotions without having to find the right words to tell other people. It was hugely cathartic, and in many ways it was what got me through the first few months.

Over the years I have shown it to a few friends, but largely I kept it to myself – now it serves as a record of how the diagnosis made me feel, a reminder of how this journey started.

But as I looked at it earlier this week I realised that it’s a lot more than that. That snapshot of the 18-year old girl struggling to understand MRKH is the reason I’m doing what I’m doing. It’s the reason I’m raising my voice, and it’s the reason all of this matters. MRKH is just one small piece, but the world is full of people like us, and we need to make it so that we’re not alone.

Jen x

Geology Rocks

Now I get excited about many things, like I really like cartoons (e.g. Spongebob Squarepants) and Lego but I really really like rocks. I wrote an article once in a newsletter I edited about what my favourite rock was. It was one very easy way to see if people actually read the newsletter, turns out they did. Not long after that through the post I received an anonymous box with my favourite rock inside. Since then my rock (and Lego) collection on my desk has reached near breaking point but I love it!

Why is this important? Well because these are some of the things that make me happy. We all need those items, places we go, food we eat, treats we go on to make us smile whether as a short term fix to a crappy day or a way to try and manage a long term problem. Surrounding ourselves in misery and sorrow isn’t going to help you deal with the situation albeit it may seem like the only solution at the time and it may take more than a Lego chameleon (as awesome as it is) or a mars bar to make you feel like you’re ‘better’. But that one little smile that one little effort to try something to make you happier is worth it and you may find will lead to more ways you can find to keep yourself on a level and away from the murky depths of sorrow. We have all been there and I am not belittling the very serious issue of depression but whilst time is a healer it’s also in the interim finding those things that can occasionally make you smile, a drink with a friend after work or whatever can be so very meaningful even if you don’t think it is at the time.

It is often easier said than done to surround yourself with happy things when you don’t feel yourself and when you worry about everything, which I do. Now when I say everything I mean EVERYTHING from how I look, what people think of me to travelling.   For example: I spent a week in San Francisco on a family holiday convinced there was going to be a massive 1906-esque earthquake and I was going to die. I’m essentially a pretty rubbish person in general when it comes to travelling of any sort, I have been lucky enough to see some amazing places, places that have really made me happy, like New Zealand. But I’ve spent days prior to a trip (business or pleasure) in tears stressing about actually going away, flight, hotel, shoes breaking (which has actually happened), case going missing etc etc. Ultimately for my own sanity I have had to try and rein in this irrationalness because otherwise I wouldn’t a) ever go anywhere and b) I’d probably give myself a heart attack.

All comes down to what I have said before learning the things you are in complete control of, the things you can influence and the things you can literally do nothing about.   You are in complete control of ‘you’ so you need to think about what you can control and what you can do for you. You can’t control the fact you have MRKH but you can control how you deal with it. I by no means have a complete handle on this but it is so much better than it used to be.

There are days I might fall apart sometimes over seemingly silly things but there are many more days when I think, do you know what? Life is good I have amazing friends, family and a job I (largely) enjoy. We all have bad days regardless of who we are and what lives we lead I guess it’s really about striking the balance between doing things for us to make us happy whether that’s making that last minute trip to see your best friend because you just need a hug or you just want to get home and have something awesome for dinner and a nice bath and to relax. Or alternatively you could do what many of us often do which is nothing and essentially that’s not really solving anything and if that continues it can compound the issue further.

I am entirely fascinated by how the world is formed, I spend my days looking at it from satellite for my job that it’s such a pleasure to see it up close in the field see an actual fault line in the side of a quarry or standing on the side of the Grand Canyon trying to comprehend the vast expanse and power of water needed to create it. Now this might come to a surprise to some who might have seen my early blogs where it was obvious I was never one for the ‘outside’. The fear that crept up when I had to go on a field trip for my undergraduate degree to the Lake District was immense – there were no doubt, tears. I had to buy walking boots I had to borrow clothes from my brother because I didn’t own anything remotely suitable for wind/rain/mud – thankfully there are no existing pictures since I may have worn the same clothes for a week. But whilst I didn’t really understand the geology, it was cool.  There were rocks moved by glaciers, we aren’t talking small rocks..but MASSIVE boulders, there were volcanic rocks, sedimentary rocks and there was a vast amount I didn’t understand but I thought was interesting.

In my gap year (gap 3 months) I went to New Zealand, for the 1000% worrier about everything, going so far away and to such a tectonically active area was a risk (given what happened in San Francisco). But it was truly the best thing I have ever done I walked on glaciers and climbed volcanoes and thought shit this is cool. Standing on top of the world above the clouds at the top of Mt Tongariro (which has since erupted!) and thinking life really does not get much better than this. To this day that moment was the best moment of my life, hands down.

I’ve had other much less mind blowingly exciting walks but still awesome ones like climbing Helvellyn in the Lake District in the pissing rain and mist (don’t know what the view was like because I couldn’t see more than about 5m in front of me) and slipping on a rock on the way down and apparently my request to call for mountain rescue for what was essentially a graze was ridiculous – didn’t seem it at the time, well for about 30 seconds at least. To many walks in Scotland, probably my favourite place in the UK, where I have visited frequently and always go back to the same places in the Cairngorms because they are truly magical in any season (and I have seen them in them all), even in 12 foot of snow. Which is much less fun than I thought it would be to fall into.

So this very unoutdoorsy, un-risk taking, scared person was finally finding something that had surprisingly captured her imagination she was actually willing to go walking, exploring even, for actual fun – pretty useful given the challenge Jen and I are doing is a walking one albeit I have never walked anywhere near that distance in one go on those many hikes I have been on. Why? Well because look at what you miss if you don’t get out there! The earth is constantly evolving albeit geological time is REALLY slow but still things change and they adapt because they have to. We have to do the same it might not take a geological length of time (because then it would never happen)to adapt but it may take a really long time to come to terms with, get over, manage whatever it is that makes us feel not like us but ultimately we do or it beats us and I’m stubborn as hell so thats not happening.

I went to a lecture by a guy recently who is a science correspondent for ITV, Alok Jha. A couple of years ago he went on an expedition to Antarctica to follow in the footsteps of the lesser known but still historically important explorer Douglas Mawson. However, it turns out Alok doesn’t really like the outside, the cold (starting to sound like me…) oh and he had never been on a boat before. You think of that quickly and you laugh until you realize that the only way to get to Antarctica is by boat from normally South America or New Zealand …….and it takes….. WEEKS….to get there. Then quite frankly you probably laugh even more and think the guy is a total idiot but he did it because he didn’t want to miss out on the opportunity no matter how scary the prospect was and how massively far it was outside of his comfort zone to do (like 1000s of nautical miles far).

Sometimes we have to take that leap of faith.

I guess what I am saying here through all the ramblings is find those short term fixes that make you smile and get you through a hard week at work or a particularly difficult client but find time to ‘escape’ not in a running a way sense of the word but in a finding time to be you and feel content kind of way in whatever form that is for you.

Love Charlie Xx