The curse of the baby shower

Blog Caveat:  I am going to make it clear now that this is by no means a dig at all at my ‘mummy’ (and daddy) friends out there and by no means am I not interested in attending and sharing in celebrating the fact any of you are having children and I LOVE that I am part of so many of your lives either as an Auntie, Godmother or a close friend, I do absolutely want to be there but I am just explaining why it feels hard for me.

For those of us who can’t have children, haven’t yet got children or are still single wanting children the invitation to a Baby Shower may be met with a depressed sigh. I was recently contacted by a MRKH girl who was going to her first baby shower and wasn’t sure what to expect and how she would feel. I know over the years I have felt a range of things from sadness, to happiness to numbness following a baby shower attendance and sometimes it can also be related to how you are feeling at the time as to how it might impact you at that moment. I did however share my experiences with her from the now numerous baby showers I have been to, to try and give her some perspective of what it might be like.

For some people though of course a baby shower is totally off the table and something they just can’t get their head around because it is too hard for them and that is totally understandable. Once you are a little more comfortable or have sought the support you need to try and find some solutions to work out the MRKH muddle then they can be manageable if you want to be part of them. Because it’s important to note that of course you don’t have to go, it is a choice to put yourself in that situation. For those of us who are open about MRKH I am sure explaining it to the person would mean they totally understand and respect your decision but my suggestion would be don’t rule it out without at least trying it and if needed have a strategy to leave early if it’s all getting too much. It’s too hard to predict how you will feel until you try but I realize that is very much easier said than done.

For me at least the prospect of a baby shower fills me with dread, it’s like a sinking feeling when someone tells you they are pregnant which ironically happened to me twice yesterday.   It’s not that I am not happy for them but it’s just that reminder that I am not at that stage yet and have no idea when that will be and it won’t be a straightforward process when I get there.

They usually involve a number of your female friends, tea, party food which is often heavily cake focused, present giving, lots of feeling the baby move and some really messed up and weird ‘games’ which might include Baby Bingo, Identify the baby food flavour, guess the weight of the baby, pin the dummy on the baby or even Pregnancy/Baby Charades – seeing my wonderful friend, and mother to godchild number 4, at her own baby shower act out the word ‘vagina’ in a game of Charades was however really rather hilarious, particularly in front of her mother.

The last one I went to my friend and I decided that whilst tea is lovely and all, Prosecco is really quite a lot better. So we took a bottle of that with us.

We were the only ones drinking (alcohol), I also sensed we may have been looked at rather oddly or perhaps it was enviousness at our cunning thinking? But to be honest it was a great help, distraction, whatever you would term it, and made it that little bit more bearable. Whilst I don’t condone the use of alcohol as an escape tactic sometimes it is just nice to have a drink and relax – definitely don’t get smashed at a baby shower I can imagine that would be a lot worse and could literally end in tears!

I didn’t feel awkward in saying no to some of the games which I just didn’t really feel happy being a part of and was more than happy to sit and watch everyone else play. That’s not me being a spoilsport but what’s the point in doing something that’s only going to make you feel more unhappy about what is already a rather depressing situation?! I want to be there to support and congratulate my friend but I don’t want it shoved in my face which as you can imagine at a baby shower is rather difficult to avoid so I find it easier to be there and take part in the bits I want to and not feel embarrassed if I don’t want to do something.

When it’s over and I come home, I don’t want to continue to think about the afternoon I have had, I want to do something fun so maybe that’s going out for dinner or having a nice meal at home or going to the cinema but I think it’s important to kind of reward yourself after putting yourself willingly, and I stress again these are things I want to be part of despite how hard they are, into what is always going to be a difficult situation.

I never want people to tread on eggshells around me because of MRKH, I don’t want it treated like a taboo as fertility often is, to the point where people don’t want to tell you things because of it as that quite frankly just makes you feel worse that you aren’t included. Yes it’s hard at times but as I said to a colleague earlier I am used to it now and if I wasn’t then life would be rather depressing given I am part of only a very very small group of my friends who don’t have children. So you do have to learn, as much as possible, to grin and bear it and find a way to manage the sadness when it happens because it is unavoidable.

If needed my personal and draft step-by-step guide is below 🙂

Charlie’s step by step to dealing with a baby shower:

1. Take wine (or other alcoholic beverage of your choice) *
2. Open wine
3. Catch up with friends
4. Drink wine
5. Play games as preferred and don’t be embarrassed to say ‘No’
6. Drink more wine
7. Get home
8. Do something fun as a reward!

*If you happen to be driving substitute wine with tea and then ensure that 8. Includes wine (or alcoholic beverage of your choice), or if preferred chocolate always helps 🙂

Zebra legs, firewater and stress management

This week has been rather eventful. Friday saw me running (in my bid for extra steps) up an escalator laptop in one hand big marketing folder in the other after having ‘some’ wine (which translates to, probably too much) and whilst in heels.

Nothing could go wrong here right?

Wrong…I spectacularly fall up the escalator at Waterloo much to the concern of the woman standing next to me who told me after I had fallen to ‘be careful’. Words I should have probably thought of BEFORE I thought that was a wise idea.

It wasn’t until I got home that I realized zebra leg had befallen me (but its ok the new shoes were undamaged!). Now zebra leg is rather painful affliction and over the week it has developed into a rather colourful delight of abstract art

 

 

To get over the woe of my stupidity I had the pleasure of celebrating my friend and walking buddy, Jen’s 30^th on Saturday this saw me walk (coz I need all the practice I can get even with zebra leg) to the station and then up to the big smoke for some afternoon tea fun and the rather dangerous concept of ‘bottomless champagne’. With a choice of tea (according to Jen’s mum we were drinking ‘fire water’ that tasted like chimney smoke – I didn’t want to ask further how she knew that) enough scones to probably feed the entire hotel plus cakes and the obligatory cucumber sandwiches it was an all very british and lovely afternoon and we were even all rather restrained with the concept of ‘all you can drink’ alcohol but that may be because of the volume of cakes we consumed in a short space of time.

Leaving the girls to their evening of debauchery I went off to Greenwich to see the stars (or not because it was cloudy) and then even get to see the nail biting last half of the Six Nations before late night domino’s and sleep time. Rounding off the weekend looking at gym gear and testing out the delights of a rowing machine (which I was never going to buy I might add) that actually has water resistance in it combining the pleasure of rowing on the water with the comfort of being inside – great idea.

The highlight (?) of the working week apart from losing my train ticket on the way back from Portsmouth on Monday where I gave two guest lectures and having to beg the guard to let me through the gate was the breath of fresh air to be out of the office for a whole day! yay!

Albeit I was on a Stress management course which given I was already stressed because of the amount of work I had to do and would therefore have to catch up on was rather ironic. However, I see this as a very positive thing for the company to be doing to help people identify their stress at work and find a way to manage it so we can get a better work/life balance we work to live not live to work after all.

The premise was to go through the different ways people show stress and how we can not only identify this as well as find ways to manage it. This may seem like a largely logical concept but it’s amazing how illogical we can all be when we are thinking about these things for ourselves but when given a different perspective it changes things completely.

Over the years I have had the opportunity to use a lot of different techniques to manage my MRKH stress and the skills I learnt are transferable and some were similar to today’s tools (albeit I got some new ideas I think will be great) but this just helps to reaffirm particularly points for me as well as helps us all to identify the things that work for us. But they won’t necessarily work all the time so its finding something that works for you.

Mindfulness and Cognitive Behavioral Therapy are some of the tools I have used in the past to manage MRKH. To be honest CBT didn’t work so well for my but Mindfulness was much much more effective at pulling me back to the present rather than panicking about the future and what might happen but it’s also true that different techniques may be useful at different times of life.  Something I do still use now as and when I need to.

When you are overworked the stress of trying to manage a million things at once seems all consuming and unmanageable so we can still use similar techniques to try and pull as back to the present and tackle those issues head on as best we can. I am not sure I still manage this effectively but it’s a good opportunity to try and make some small changes and a bit of trial and error to see what works in a period for me at least where resource pressure and workload means it will always be busy.

Today it was all about taking control and not ‘being a victim’. Something I can relate to with MRKH as well it’s very easy consciously or subconsciously to go into ‘woe is me’ mode.  Now I am not belittling how people handle this or any other situation at all because actually its normally bloody difficult  but by admitting there is a problem and seeking help, in whatever form, is the first step, dwelling on the issue and letting it consume you is helping no one, particularly not you.

It may not work for you and perhaps some of the other tools available through the wider NHS (loads of stuff on this on the web) may also be useful. As part of this course, and before it started, we had to take the NHS mood assessment test a test designed through a series of rather straightforward questions how anxious and how depressed you are and then some useful tips on what to do next. To be honest this might be stating the obvious to some but it’s interesting to see if the way you think you feel is the way that you subconsciously come across in the way you answer the questions. Invariably it will be the same but in some cases it might give you a different perspective. I know I am a traditionally anxious person anxious about pretty much everything in pretty much any situation which only exacerbates my stress and something I try very hard (and often fail) to resolve. In my irrational brain anything that could go wrong probably will even though I know rationally it won’t and if it did happen to ‘go wrong’ then there isn’t anything I can do about it. I am a delight to fly with as I know my friend Kerry would particularly (not) agree with after Milangate 2012.

There are many things that we can control, there are many more things we can influence and there are loads of things that we have absolutely no control over like flight delays or emergency road works holding us up on the way to work. If, and this is a big if, we can recognize these then that is a start, once we do then we can take control of our own situation but the hardest thing is recognizing it and realizing the detrimental impact that is having on us from a health and general well-being perspective

We are all human, what works for me may not work for you, might be a bit of trial and error but ultimately its worth it

This weekend sees Jen and I embark on our first combined training walk for a very long time…we shall be sure to update you on what I am sure will be a hilarious escapade if we are both involved. Hopefully no blisters of zebra legs this time…

Walking: what I have learnt so far

Assuming we survive today without drowning in mud puddles or being eaten by passing sheep, we’ll probably go again in future***

*** But not if it’s snowing, hailing, raining, drizzling slightly, or that little fluffy cloud is looking vaguely threatening. And assuming we have suitable footwear. And not if it’s too muddy, too flooded, too foggy, too windy, or too sunny. And probably not if there’s a ‘y’ in the day…

Words to live by right? I admit these were not coined by me but by my good friend Rachel as part of our workplace active lifestyles campaign to get people less sedentary in our office based environment. I am sure a lot of us probably have a reasonably amount of sympathy with this statement because realistically it takes the edge off walking if you have to walk through a bog (not quite the resistance training I am used to), if it’s snowing if it’s raining or indeed sleeting (had that recently) but I don’t have the luxury to think, oh well the weather is rubbish so I think I will stay inside. It’s very easy for us at work when the time is limited and the weather is rubbish, and totally justified, particularly when there is cake in the office, but at home…I can’t get away with it. I just have to suck it up and get out there and know that at the end there will at least be a washing machine and a warm bath (if I remembered to turn the booster on)

 

 

So what have I actually learnt so far?

Walking is much harder than you think.

• 10 mile training walks take a lot longer than you think
• Do not do said 10 mile training walk in your trainers when you have actual walking shoes…idiot
• You get aches in muscles you never knew you had
• You feel utterly justified coming home and eating an entire bag of kettle chips, and not a little bag either (this is not a crucial part of my diet plan I might add)

Whilst I am starting to develop the most defined calf muscles of my life my incessant feet pointing in (a ‘habit’ my parents thought I would get out of) means I trip a reasonable amount and more importantly here it makes my knees, ankles and often hips ache…particularly walking long distances – something I have only really found out recently. I feel like an old lady when I get home and stumble through the front door in an often sweaty mess and lie flat on the ground with the delight I don’t have to walk anywhere for at least half a day.

But this means these are the areas I need to work on more I need to build up strength in those areas that are achey (ankles…how the f do you do that?!). Core strength is also important so lots of core exercises such as ab control, back exercises, planking etc have all helped me build up strength in my upper body…I can now (almost) do actual press ups without cheating! The one lunchtime a week of Sworkit circuit training (‘Strength, Full body, 25mins’) always meets with a groan from my lunchtime work workout friends but the mixture of pushups of so many varieties I am sure they make them up to make you look silly (spiderman pushups…wtf?) to the squats and lunges that help build up both core and lower body strength are a good way to get the body moving and strengthening the muscles and lest we forget those all-important calf raises and ‘sky humps’!

Actually whilst it might not sound like it I do actually like doing exercise, as I described to my colleagues recently, I am an enthusiastic but decidedly rubbish runner, hate swimming, and a mediocre cyclist so walking a long distance seemed something challenging but that I should be able to complete, although it is not to be underestimated. My friends at work have been very supportive asking how the weekly training is going ‘oh 10 miles yesterday, wow that’s great’ yeah it is great until you factor in that took about 2.5 hours at a reasonable pace and I have to do 6 times that in one go, without sleep, to complete this challenge and then it seems like it’s not quite enough. At the moment it’s about building strength and then continuing to build the distance as much as is possible before the event takes place. I just keep telling myself that there is plenty of time.. because there really is, but only if Jen and I get out there and train.   Lots of exercise during the week and one long walk at the weekend is a good benchmark and I do notice the difference in the training, I am seeing a whole new side to where I live, its actually got some nice parts to it and I thought I was all about the Toys R Us with the 1960s car park on top of it…how wrong was I!

Raising awareness in 6 minutes

Fran, Lise (www.mrkhnorge.org) and I participated in a MRKH support and awareness film for Fixers (http://www.fixers.org.uk/).  Fixers is a project of the Public Service Broadcasting Trust, funded by the National Lottery through the Big Lottery Fund, and featured on ITV.  The ‘Fixers’ are the young people who are using their past to fix the future  – these are from a range of different walks of life and experience.  They are motivated by personal experience to make positive change for themselves and those around them.  Fran wanted to do this to document her own and other MRKHers experiences as part of raising awareness of MRKH so it was something I was really pleased to be part of.

Filmed last year it has just been released and can be watched below…instead of telling you about it I thought I would let you watch it, its only 6minutes…go on…you know you want to check it out 🙂

IVF Surrogacy, what does it mean for me?

‘Surrogacy’ – sometimes considered a dirty word in the sense that it is considered by some to be against the natural process of life or even fraught with so many legal considerations it just not a ‘safe’ option to consider. In reality surrogacy has changed a lot since it started and recent reform discussions seek to change this even further and make this often difficult subject and difficult process perhaps a little more acceptable and better still straightforward.

It is important to note that IVF Surrogacy is one route for us MRKH girls if we want to have a family but it’s not the only route. Other options are fostering and adoption but for those who wish to have their own biological child IVF Surrogacy is the only option. As such it becomes rather attractive to many of us given that adopting a baby is normally extremely difficult and for some a non-biological child is not an option or not a preferred solution when considering those next steps. With that in mind I want to share my personal experiences of IVF Surrogacy.

Some of you may not know but the IVF process itself is generally the same for MRKH girls as well as for those who have other fertility issues that require IVF but who don’t need a surrogate. The only difference is the embryo is placed into someone else when it comes to IVF Surrogacy and there are additional checks and considerations to be taken into account but the medical process, the ‘IVF’ bit, is the same.

So what does it entail?

In its simplest and perhaps crudest terms the general steps are below (yes these are very very simplified)

• Fertility tests
• Funding check / Private payment set up
• Counselling
• IVF drugs for ovary stimulation
• Egg extraction / Sperm sample
• Embryo generation and quarantine
• Find surrogate
• Implantation into surrogate

Over the years I have sat through many talks from medical professionals as well as MRKH women who have gone through this process with both good and bad stories to share. Whilst it’s not always the case, MRKH girls are often, but not always, still quite fertile so the fertility is often not the problem as it is with others who might require IVF but we just can’t carry our own children so from that point of view it is often a viable option with a reasonable, and ever improving, success rate.

With that in mind 4 years ago I wanted to find out more about IVF and whether my boyfriend (now ex) and I were fertile enough to pursue it even as an option. We were referred to a fertility specialist, in this case we went to IVF Hammersmith as this is linked to the national centre for MRKH. The initial consultation provides a little more information on the process and then they request you have a series of blood tests (both you and your partner) as well as an internal scan (me only) and a sample (obviously him only!). These tests are then run to establish fertility and whether IVF might be a viable option as well as, and important in the case of IVF in MRKH girls, how easy it is the access the ovaries as this establishes the route for egg extraction. In women who have wombs the ovaries are of course attached but in MRKH women the ovaries have nothing, or something only very small, to attach to and therefore can often be a little more elusive. I have one up near my diaphragm whilst the other is closer to my pelvis for example, some with MRKH may only have one or perhaps in few cases, none.

Tests undertaken and fertility checked we were told all was as good as it could be to take forward. The next step was to see whether the NHS would fund the process. In most cases the NHS will fund IVF (at least one round) BUT only if the embryo is being put back into the same person. It’s important to note that regardless of whether the NHS will fund the IVF process itself, they will never pay the surrogate expenses*.   But you would think that given the circumstances and that the IVF process is the same for women with wombs as those without in terms of hormone stimulation and egg extraction that both would have access to the same funding right? …Wrong

IVF Surrogacy is a minefield of what medical professionals would class as ‘ethical and legal issues’ which is one reason why Surrogacy UK are fighting so hard for the surrogacy reform to take place. Despite the unlikeliness of the getting funding, we knew it did very very occasionally happen (NHS postcode lottery at its best) so we still applied and were declined funding 3 times in total across a period of 10 months with various rounds of letters to doctors, hospitals, MPs to try and put the case forward, to no avail.

Sadness doesn’t quite explain how you feel when you are told that due to something you can do nothing about the process can’t be supported. This is even harder to swallow when the NHS will spend £1000s on supporting things such as non-emergency plastic surgery or long term medication but a one off payment of ~£6,000 is something that is not considered ‘ethical’ to do.

Now I could pay for this process myself, essentially going private, and most people do in this situation. The cost would be the same and the process could have started immediately but at the time we weren’t in the position to have children, our main concern was seeing if there were any other nasty surprises we might come up against and then store the embryos (something we would have had to have done anyway due to quarantine requirements) until a later date.

I still don’t feel that we should have to pay, I guess in part that is part of the issue, there are plenty of people out there in my position that want it so badly they will pay. I suspect that might be why trying to reform the system and for NHS England (and subsequently NICE) to consider MRKH as a condition that requires the same type of support as those who have fertility issues such as Poly Cystic Ovary Syndrome (PCOS) is taking time. That and the obvious legacy legal issues of the surrogate mother being listed as the ‘biological mother’ on the birth certificate because they are the ones who have given birth to the child (this is then changes a few months after birth via a parental order) I can’t think has helped. The problem is when a number of these regulations were written Surrogacy was in it’s infancy and not as widely available as it is now. But these antiquated rules still stand and it is something the Surrogacy reform is trying to address.

So what is the surrogacy reform?

Basically the Surrogacy laws have not changed substantially in 30 years, some small changes have been made to improve the mechanism of transfer of legal parenthood and to consider taking away the restriction that only those married heterosexual couples could consider this option but there is still a lot to do. This is highlighted further that owing to the UK system some UK couples will travel overseas for their IVF Surrogacy treatment because they feel that it is their best option, and perhaps it is, under the current system.

The Surrogacy reform has been designed to:

• Ensure that the welfare and interests of surrogate-born children are of prime concern
• Remove uncertainty over parenthood
• Broaden access to surrogacy

I am not going to sit here and paraphrase the hard work of those involved but if you are interested then you can read more about this here http://www.surrogacyuk.org/legal-reform-for-surrogacy.html

Why is it important for me?

In short the IVF process for me, even at only the initial stages sadly killed me and my relationship because we weren’t communicating and the whole process was considerably more stressful and upsetting than I ever imagined. Whilst that may sound very negative, it made me learn a lot and it is certainly not a process to go into lightly, albeit at the time I didn’t think we did. To be honest that option has been shelved for me now and I am not sure that it’s the right path for me anymore. However what is important to me is that I want to make the process better for the future. Whether it’s something I will undertake is uncertain but if I can lobby, write letters (and get MP support!) and do whatever I can to make this option, and others more available and straight forward as it possibly can be then I will.

 

 

 

 

*These expenses, a record of which must be kept to show proof you haven’t paid for your baby above what is considered reasonable. These might include costs incurred travelling to scans, maternity clothes etc etc and what is covered by these expenses is pre-agreed before the process starts. Typically this might be in the region of £15,000-20,000.

2003 and me

This is the story of me and my friend Phil Revell

I first met Phil at a party at a mutual friend’s house in 2000 he was 17 to my 16. I knew a few of his friends but had never met him, we kind of instantly clicked, just one of those situations where we could have talked all night if we had had the chance. The party came and went and I got a message a few days later from Phil as he got my number from one of my friends and the friendship started from there.

We spent quite a lot of time together, going for coffees, meeting for lunch and at each others’ houses.   He made me laugh, a lot, the things he said as well as the things he did, like falling over in Sainsbury’s carpark as he so very un-casually fell off a curb whilst talking to me – and I thought I was the accident prone one!

In July 2001 I was diagnosed with MRKH following a laparoscopy assessment, I had waited in a hospital all day after the surgery to be told I wouldn’t be able to have children and all I could think about was going home, I was tired, in pain and just didn’t want to be there anymore. I had pretty much got to the point of ‘OK great, can I go home now’. The following day Phil turned up at my house, he knew I had been in hospital but not what for. I remember we sat in the garden on the picnic bench and he sat and listened as I told him in a very straight and unemotional way (because I hadn’t processed it and didn’t for some time) that I didn’t have a womb and I couldn’t have children, oh and to top it all off I was going to need some extra ‘help’ to have sex. Pretty weird to say this to a purely platonic friend but he listened and he held my hand and he gave me a hug and told me how much he wished it hadn’t happened and that it would be ok. I will at this point also point out that I had a boyfriend at this time. He turned up at my house not much before Phil but only stopped by briefly on his way somewhere else, I forget where. He, on the other hand, didn’t take it well, I found out not long after that he had told all of his friends, 95% of whom I hadn’t met, exactly what had happened. The relationship didn’t last much longer after that…and certainly gave that first realisation that the support I expected to get (e.g. from my boyfriend) was dumbfounded.

I found a lot more support in Phil, he was there for me for the fun and laughs as well as for the serious stuff if I needed it. I came to know and like his parents a lot as well and I remember being really sad when Phil and his best friend and partner Matt went traveling around the world. I felt like I was losing the support that I most needed at the time so in true early 2000s teenage style I gave him my friendship bracelet and told him to bring it back to me, which he did. He was only gone 6months but it felt like the longest 6 months EVER!

He came home and we fell largely back into the same routine, albeit I was by then heading off to university and so the dynamic was shifting a little as we adjusted to only seeing each other more occasionally.

Phil died on 7^th June 2003 age 20, his best friend’s, Matt’s, birthday.   He was hit on his motorbike by a drunk driver in a van not far from where I lived. I woke up on 8^th June to about 25 missed calls and messages from Matt, who at this point I hadn’t met or ever spoken to, asking if I had seen him as he would have had to drive past my house to get home. The final message was him telling me that Phil had died and could I call him back – I actually thought it had been a sick joke.

My phone had been on silent as I finished my first year university exams on the Saturday (6 hours of exams on a Saturday – what is that about!) and the Sunday we were celebrating my brother’s 18^th birthday so I wanted to get a good night sleep.

I had seen Phil only 4 days earlier out celebrating his own birthday with his work colleagues. This was the first time I had seen him for ages and we had a quick catch up and then promised to catch up the following week once Uni was over.

That morning I felt my world fall apart this person who had been so supportive was no longer there. What was I going to do? I felt really lost.   I remember speaking to Matt and I was told what happened, hadn’t ever imagined that the first time I would speak to Matt after hearing so much about him would be to talk about how Phil had died. Needless to say time seemed to go very slowly for a bit, it was the Uni summer holiday but I didn’t feel much like celebrating. The week leading up to the funeral was hot and sticky and I was doing some temp work in a school kitchen, all I can remember is listening to a really (and I mean really) rubbish song over and over again whilst I tried to remove myself from what had happened. Displacement therapy…great short term…really not great long term.

At the funeral, I decided I wanted to stand up and say a few words so I wrote him a letter which I read out at his funeral.   It was important to me to stand up and say something about the person who, although I had only known for a short time, had been so very special to me. He made that early time of my diagnosis that much more bearable just by being there and being the kind and gentle person he was.

2003 marked a crappy year for me, my brother and my friends. In that same year 4 people we knew died in separate car crashes. So many of those close to me felt loss that year and it all affected us or impacted us in different ways.

I don’t think I will ever meet anyone like Phil ever again, and that’s ok, I don’t really expect to, we are all different after all. I will never forget the support he gave to me at a time when I needed it the most when it all seemed so scary and lonely and I will thank him forever in my dreams for the part he had to play in my life. When 2003 happened I didn’t think I would ever find someone like Phil again, it was because of this that I went to see the psychologist the first time to try and get through the muddle of why these horrible things had happened to me and seemingly kept happening. I have since found support from so many people a very small group of whom I can rely on any day, any time, if needed.

Everyone, even the strongest people need support MRKH or not and often support in different stages of your life can have a huge impact on your general mindset and overall well being.  By widening my support network it has made me more open and able to share without being too reliant on one person, for their sake as much as for mine despite the fact I know they are there if needed.

You can never get over something like the loss of someone special to you, you never forget them or what happened. I still have a photo of him up in my house, I will always have one, because it reminds me not only of him but also that life is precious and to be lived to the full for as long as we have.

He will always be in my heart

Life is a game..

…made for everyone, and love is the prize (Wake me up – Avicii)

We all play the moves and see what happens and our ultimate goal is happiness whether that’s love for ourselves, from others or for others. You can’t plan for the future because you don’t know what is going to be flung your way, you can have an idea of what you might like to do sure, but life happens and sometimes its not possible, or perhaps not what you want to follow that previously defined path so you have to keep an open mind. Life is a game of strategy to a certain extent, kind of like Risk (I will at this point note that I have never in fact played Risk in case this becomes relevant to my ramblings) we take risks all the time to try and improve our lives. It might be taking that punt on that new job, moving to a new area taking the chance on someone new some of these risks pan out well and some sadly don’t that’s life.

The saying goes that ‘hindsight is a wonderful thing’ and I am sure all of us have those things we have done or said or wish we had or hadn’t done or said but we can’t change that we have to move away from the past because whilst the past shapes us it doesn’t define us, dwelling on it isn’t helping anyone, particularly yourself. In reality hindsight is a bitch but the fact we can recognize things we should or shouldn’t have done in many ways is also positive because it means we can learn from them (or not if my DIY (lack of) prowess is anything to go by having electrocuted myself twice at the weekend rewiring light switches….reminder to self *must check mains next time* – stupid hindsight).

Now my family knows I am not a great person to play games with, I get very competitive and have been known to be liable to tantrums, tipping the board upside down etc if I don’t win, was very awkward on holiday with my cousin in Vegas where I didn’t talk to her for 3 hours because she won more money than me.   This temperament is however improving; my parents will now actually play games with me again after banning all family games following ‘Eastergate’ 2012. I have realized that actually being so overtly competitive is just annoying, for me and the people around me. What does it achieve? Nothing really because I am still crap at the games I am so desperate to win. Whilst it is a game, of sorts, life isn’t a competition, there is a difference.

For some people life however is competitive, all about one-upmanship but all it seems to do is piss off us other folk and perhaps make us over worry about our own situations particularly if we are feeling unsettled or low. In reality though things are often much better than we think when we sit back and take a second. These competitive types might want to have the biggest house, most expensive cars, most expensive/lavish wedding and maybe best children but who cares, if you are happy, have a roof over your head and drive a fiat panda (nothing wrong with a fiat panda) then actually you could be the one winning in this situation because you are probably, although it may not seem like it, happier than them. The very fact they have to shout about their achievements the whole time screams their insecurity or own unhappiness. I will at this point note that it is one thing to be proud to have achieved something new and wonderful and to get that new car, job, wife, husband, baby you wanted and those are not the people to which this would be directed as I like hearing those things, but it’s another for things material or otherwise to drive your very being and sadly there are people like this out there.

If you can afford and enjoy material things then so be it, if your children are amazing, good for you but doesn’t mean I have to feel undermined because I don’t have those things or my child (if/when I have one) doesn’t do those things at the same time as ‘so and so’ from the baby group because quite frankly we are all different as we know. The strategy we take in life must be the path we want to, no one else is taking it for us. It could be the path of least resistance because it’s easier for us to do that or because that is naturally how it works for us or it could be the challenging path full of difficult situations those could be situations we impose on ourselves e.g. walking 100km or ones that sadly are thrown our way we have to deal with, or more likely in most cases, it’s a combination. I think of it like snakes and ladders, a mixture of ups and downs, sometimes feeling like we are flying high whilst other times being taken right back to the start again, that sadly is life. There are no ‘get out of jail free’ cards here; you just have to get on with it in whatever way you can.

Want vs Need

This comes up a lot in the business I work in, you may want something (I’d love an old school red Porche 911) but do you actually need it? I want children but I don’t need them right now, I want a bigger house but I don’t really need one right now. We have to learn that life isn’t a competition the whole get married in your 20s and have 2.4 children is so much more a thing of the past now, life just isn’t like that anymore and that’s ok, life evolves as time and people evolve and priorities change. There are some people I know at my age or older so desperate to have children that they will settle for a relationship or situation that isn’t ideal just to have what they want which I find so sad. The alternatives may not be what you wish to follow but in the long term they may well be better for you and maybe even make you happier. Of course you never know (stupid hindsight again) but being realistic comes into it to make sure we aren’t doing something with clouded judgment that may in part make us happy but in other parts really not – is the trade off really worth it, is it not better to be more certain?

Life throws stuff at us to make us think, to challenge us to keep us on our toes how we deal with it helps us move onwards and upwards, sure sometimes what we try won’t work but then we get up and we try something else, we don’t give up. The game doesn’t end until it’s time for it to so we can either coast along with life the way it is knowing that we aren’t doing as much as we could or we do our best (not always easy I know) to try and make those changes, think small in the first instance and take small steps to making things better, I am sure you will feel happier even for taking those first small steps and the big wins that it provides. I was really pleased to see that a contact I know has taken the first steps to reaching out to the hospital for some support and to meet the medical team there to start to get to grips with MRKH even though she has known about it for a long time, she was so excited, nervous but excited and that’s great. Small steps but big wins.

Doesn’t mean it’s going to be easy but life isn’t, we either live it or we let it consume us and we can’t be afraid to ‘Call a friend’ and ask for help. It’s up to us.

What makes you different, makes you beautiful

Before you start vomiting in your mouths at that cringey title, following on from Jen’s blog about music I thought given this week’s news I would also put my spin on it too – and yes that is a title of an actual song by a well-known 90s boyband, as I am sure you all knew.   Now I am perhaps (definitely) not as musically cultured as Jen, in fact quite a few of the people she mentioned I had never actually heard of although I recognized some of the lyrics from songs I know and love as well.   The soundtrack to my life is much more on the cheesy pop or dance/trance side interjected with some 70s rock so if anyone ever made a film of my life (what a watch that would be!) it would be full of SClub7, 5ive, Backstreet Boys, Steps, and Take That as well as Faithless, Sigma, Rudimental with Journey and Van Halen for good measure.

Despite what some might consider (and they would be wrong) my questionable taste in music it has still been a big part of my life, albeit I am often cursed for saying ‘I know this song…isn’t it by X’ only to find out I am actually listening to the original and I didn’t even know my beloved [insert crap band here] did not write it originally – I am far too ashamed to provide any actual examples here but it’s bad! But do you know what? to some extent who cares, music can be important and completely take over you regardless of whether Eric Clapton sung it originally or Spice Girls it can still make you feel spine-tingly awesome and remind you of specific events, people etc for example…

•  Backstreet Boys, Black & Blue album: reminds me of Jurassic park
• N*SYNC, No Strings Attached album: reminds me of A-level music revision
• 5ive, Keep on Movin’: reminds me of trains
• N-Trance, Set you free: reminds me of my last summer ball of University
• Glee Season 1 soundtrack: reminds me of one specific project at work
• Goo Goo Dolls, Iris: reminds me of sunflowers
• Mariah Carey, #1s album: reminds me of being diagnosed with MRKH

I am a big fan of finding a song or album and listening to it over and over again, I listened to Journey’s Don’t stop Believing 70 times in one day, that was on continuous repeat, that is how obsessive I can get with music, it is also the most listened song on my ipod.

Like Jen I like songs with meaning, with words that I can really find some relation to, Counting Crows, Goo Goo Dolls, Journey etc are very good at those poignant songs that really hit you and make you think and feel every word but there are other songs, perhaps some you wouldn’t expect that also mean something to me, Candi Staton’s ‘You’ve got the love’ (itself not the original, I just googled to check) may have been remixed what feels like 1000 times but it’s still one of those songs that I absolutely love, the perfect combination of dance music and, to me at least, poignant lyrics (yes that is possible, see below)….and there was my brother thinking ‘Charlie’s mobile disco’, as he used to call my car, was all about the baseline.

‘Sometimes it seems the going is just too rough
And things go wrong no matter what I do
Now and then I feel like life is just too much
But you’ve got the love I need to see me through’

You can easily get absolutely lost in music, caught in a trap, no turning back, it can be all encompassing it can be the thing we turn to to de-stress at work, in the evenings, at social events and when we are by ourselves, not only that but it’s everywhere. Without music; films, television etc would be completely different try watching a scary film without music, its not as scary, I promise. Music can therefore change our perspectives and mindset even on a subliminal level.

I find music can help me take stock and be me little way of dealing with those tricky times. I guess each of us find that one thing or handful of things that to us helps to separate our mind from day to day life and for a short time at least immerse ourselves in a different world. Some find that joy in music, some find it in exercise, cooking, shopping, spa treats or maybe any combination of these things or others.

Nowadays we are brought up in a social media and technology driven world where often appearances, how we should eat, what we should eat, how we should act become so much more important to us, largely because they are so consistently shoved in our faces. They were simpler times when I was at school because we didn’t have to worry about that, so much has changed with technology in such a short space of time its bonkers but I think we shouldn’t forget that despite the drive to do everything as others do or to look like someone particular it’s about finding our own identify and our own place in the world and not being afraid to do that just because it’s not what everyone else is doing.

For some of us that can feel overwhelming to say the least and maybe even seemingly impossible but it is possible we just need to have a little Faith and courage to take that leap and be individual. It’s not always possible to follow the same path as others, doesn’t mean we aren’t normal (because quite frankly what is) it means that we make the best of a situation because ultimately we have to do so otherwise it will consume us and I see this happening so often with people who have MRKH. We become so consumed and hung up on what lives should be like as we look at our friends, sisters, mums and aunties that some of us forget to enjoy what we do have.

There’s no limit, Love your perfect imperfections and Lose yourself and your Natural blues, Go your own way, don’t Hide, Hold On as you make your own path to Reach for the stars, Challenge what the future holds and Don’t stop movin’, Take a chance, Dance with some body, Feel, Happiness, not Loneliness, Until the time is through

Am I wrong? No, because You are amazing, just the way you are

Good luck

 

*Songs/Lyrics in italics (separated by commas): Sister Sledge, George Michael, 2Unlimited, John Legend, Eminem, Moby, Fleetwood Mac, SClub7, Desree, SClub7, Magic Numbers,Creed, Wilson Phillips, Whitney Houston, Robbie Williams, Alexis Jordan, Tomcraft, 5ive, Nico&Vinz, Bruno Mars, Basement Jaxx

New Year, No Excuses, Bugger

That means no more putting off extensive training walks it also means active sponsorship and awareness raising and putting into practice a lot of what Jen and I have talked about for the last 6 months knowing that we only have just under 6 months until D-Day.

This year’s resolutions shape up something like this:

• Have fun
• Walk more*
• Keep fit
• Be awesome at work
• Don’t break stuff in house**
• Raise a whole heap of money and awareness for MRKH
• Win lottery***

 *Quite important

**it’s expensive and I would rather spend the money on shoes

***Unlikely but we can always dream

So for Christmas I got a range of presents including those useful for the walk as well as those that will be significantly less useful. The less useful presents include being a god mother again to the 6 month old Oliver (really awesome news but really not useful to me for the walk although this is not a good excuse for babysitting duty Jen and Ian ;)), perfume (although at least I will smell nice), slippers (apparently not practical walking attire, although sooooooo cosy with monkey faces on them) and a UAV which in all honesty is more likely to cause me injury than actually be useful for walking unless I can master the art of flying it and perhaps using it to film parts of our training sessions, which based on my current success rate is unlikely.   But the useful presents included a head torch and a Fitbit. Now I wanted the Fitbit as I thought it would be helpful during training to keep track of the steps/distances I was travelling. After all, Steps = Kilometers.

Whilst it might look like an ASBO bracelet I can assure you all, and particularly my parents, that it’s not and that it does indeed count steps, distance, measure my heart rate, track my sleep, have a stop watch, an alarm and through the app also allow me to track my daily food/water intake. So it pretty much does everything I will need for the walk so maybe it can walk for me as well? Or engage in electric shock therapy if the pace dips below a particular level? Although apparently this isn’t how they are designed to work.

Now I am already pretty active so it might seem that walking that kind of distance would be ‘easy’, well to those who think it will be ‘easy’ I challenge you to join us because even for the fittest souls 100km is a long way and requires endurance and stamina. It uses muscles that you perhaps might not usually use for long periods of time unless you are already used to hiking considerable distances. Now I like a hike as much as the next person but haven’t ever hiked anywhere near that kind of distance in one go so it does require training. My dad had concerns that I might get bored walking, I did an 8 mile training walk recently by myself and he asked me if I was bored. I explained to him that actually no I wasn’t and I don’t expect to be bored because I have a Jen to walk with (so really no disowning happening Jen, you are well and truly stuck with me). My Dad is yet to meet Jen, but when he does I think he will know why it will not get dull, there is always plenty, and often random discussions to be had and when needed we have ipods etc to distract us….plus there are OTHER people walking so we might even talk to OTHER people…shock horror! So no I am not worried about being bored I am more worried about what state I will be in at the finishline and what aches, pains, strains, blisters, bruises (very likely as I am extremely clumsy) may have befallen me and/or Jen on the way.

Plus I think it gives you that extra boost when you are walking for something that you truly believe in as it motivates you to continue and complete the challenge that you set yourself. It probably sounds decidedly mental of me to say that I’m actually excited to do this walk, I am excited by the challenges that 2016 holds because believe me it really can’t be worse than the last couple of years and for once in my life I feel like I might be able to do something useful that will directly or indirectly help people in what is often a very challenging and lonely time, particularly at the early part of diagnosis, whatever age that happens.

So over the coming weeks expect to see more from us on what we are doing to raise awareness and generally make pests of ourselves (in a nice and lovable way of course) to get people’s attention on this topic. Watch this space.

We always welcome any comments, shares, likes, retweets, follows, suggestions so feel free to send them to us privately or through facebook, twitter and our email address.

BYOT Christmas and festive stomping

I promised my Dad the best Christmas ever, it’s just me and my parents this year and it will be the best even if I have to Bring Your Own Tree (BYOT) to my parents’ house.

I received a brilliant email from a friend of mine this week as we were sharing Christmas wishes where he said the following:

What’s your plan this year? Are you the sort that travels the length and breadth of the country on visiting duties, or are your family all together? I’m curious how fancy your lunch/dinner is, as in, how many birds are stuffed into the turkey? Any quirky traditions? Compulsory films? Does Santa still come?

I tactfully pointed out that the chances of us having a roast were rather minimal so having a multi bird stuffed dinner was unlikely and that Santa never came to my house as a kid so it was unlikely he would as an adult. This may make Bishop Christmases sound rather depressing but it really isn’t. A Bishop Christmas is a great Christmas without the farce of potentially forced roast turkey eating when no one really likes it, without the family all descending when you don’t all get on and where we can have a rather relaxed but still hugely enjoyable time.

Christmas is not ‘just about the kids’ it’s about being with the people you love and for some its about having one day where you try to have a meal together without killing each other. This maybe more easily said than done for some families I realise. It’s centred on one day of the year, probably the only day where the shops are not open and people grudgingly or not are destined to spend time with friends and family or perhaps in less happy cases, unless preferred, by themselves.   However Christmas in the Bishop house is never quite standard as you might have guessed as my mum actively despises Christmas, with a passion.

A genuine message from my brother on our family whatsapp group on Christmas Eve:

Merry Christmas Eve all 😉 X

To which my mum replied:

 Ah yes. Of course. I had forgotten xx

She then proceeded to combine a set of emojis to highlight her displeasure of it being Christmas, it included a lot of wine glasses and a scary face.

Decorations:

My parents have not had an actual tree up in their house since my brother and I were kids, probably some 15 years in reality. They have had Christmas twigs (of course the staple of any Christmas decoration, right?), the Christmas bowl of cards (because The Times said that was the ‘trendy’ thing to do) or better still in mums eyes absolutely nothing. I wasn’t having this, I wanted a tree, mum wouldn’t get a tree before Christmas eve so I have resorted to buying a tree for them and bringing it with me, I was informed there were decorations still which was something. I put it up when I arrived on Christmas Eve and I will then take it down and pack it up on Boxing day when I leave.

Christmas traditions:

Well that’s easy, there really aren’t any. We never have a full Christmas roast, we don’t roast chestnuts on the open fire, we don’t have stockings, my parents regularly don’t buy each other gifts, barely do decorations but we do eat fantastic food (thanks mum), have a champagne breakfast, have the obligatory Christmas dog walk, enjoy a tipple or two and actually enjoy each others company (I am sure my parents would agree that my company is a delight!) and that to me is what makes my Christmas. I really love Christmas it still makes me excited like a small child.

 Presents:

Now of course we still do presents however my Mum and Dad’s way to do presents for us is ask us in August/September time what we want. We have learned over the years that the chances are if it’s not something she can purchase is Sainsbury’s then it’s probably not going to get bought so vouchers are a common and very well received gift.   My brother and I however do tend to go for proper presents for my parents and get them things they actually might like. Although in reality they would really rather genuinely us not spend our money on them but of course we would never not get them a present! We may only get a handful or presents each now we are ‘adults’ but that doesn’t detract from the enjoyment.

Christmas dog walk:  

Christmas is no time for taking a back seat with the training so the Christmas morning dog walk with my mum is a great start to the day – even if I was frog marched out of bed at 7.15am – this was supposed to be to avoid the rain, which still hasn’t appeared. This is normally a brisk walk over a few miles across the lovely Kent countryside with my parents’ golden retrievers. No lying in in the bishop house that’s for sure.

Family:

Family to me is very important my parents may be a bit quirky or peculiar at times but I wouldn’t change them for the world. Sometimes it’s the little things and the little gestures that really make a difference. We have never been the type of family who feels they must see each other on Christmas day over the years we have done lots of things separate, even been away over Christmas but if the opportunity is there then it’s really nice to share it with them. This will be the first Christmas in 30 years I have ever spent just me and my parents, the only other time was when I was 1, the year before my brother was born, which as you might expect, I don’t remember. I for one am really looking forward to it, I know my Dad is and my Mum will even if I have to force her 🙂

Merry Christmas Everyone