Endo 365
Your favourite lunatic here, writing in bliss on the plane to Barcelona (my favourite time to write). I am completely alone and sharing as intimate and introverted inter-thinking time with myself as my life allows, facilitated by the discipline that flying gifts: no phone, in my case no friends to talk to, in a transitional period from destination to destination.
I thought I may go a little deeper into Balancing school with endo. Bare with me, even if you are not at school, perhaps this may be relevant to your career and life.
First thing is first: ensure your school (or employer) knows. I have always had good relationships with the head of my year's, if you keep them informed on everything, it is their responsibility and duty of pastoral care to ensure your teachers know as much as you would like them to, but in a way that ensures your needs are met. Punishment for attendance should not apply to you for example, you may be able to drop non compulsory modules etc. You teachers may be more inclined to extend deadlines if you have been unwell and go out of their way to catch you up. In my experience, the more they know, the better. I was able to discreetly slip out of lessons if needed be with no fuss made which is such a relief. After strong painkillers, especially during my GCSE's I used to fall asleep in lessons without being shouted at or removed.
There is such a thing as positive discrimination.
Generally, girlies with endo will have to have time off during their 'time of the month.' So initially, we have to get good at playing catch up. As I mentioned in my former blog, try not to leave this until you feel like you are drowning. Tick a long doing half an hour a day, if nothing else it will make a refreshing break from Jeremy Kyle (reminding yourself that you do indeed, have some braincells remaining). Although my Papa ironically argues that the occasional viewing infacts reinforces that he does indeed have a brain, and a brilliant life.
As I mentioned in my previous blog, I was diagnosed with dyslexia at the age of 6, and have always had to fight and work harder to fulfil my academic potential. Because of this I was never the typical child hating school; Instead I actually valued it and education. I believe that education is the ultimate tool and gift to man and woman kind. It was so important to me that I did not let my endo win doubly and stop me from achieving my qualifications. It is a battle worth fighting because the outcome effects the rest of your life.
It is scary, and it is so unfair, but if you are in pain every day, then your endometriosis has won one war already- Do not let it win another and take away your potential as a human being- depriveing you of the qualifications and education you would have had otherwise. You are bigger and greater than this condition, do not allow it to devour your life.
I am very aware that education is not only founded in school, but it is a good start. During my AS year, my head of 6th form mentioned as an option dropping out and starting again once my pain had gotten under control with the next year. Obviously I was reluctant and eventually I dropped two of my five A Levels (I would have only carried three on anyway into A2 so it seemed silly to catch u on all five. It just put the presure on the three!). We stripped it down to the bare necessary (the simple bare necessities) and eventually not only did I catch up, but significantly surpassed my predicted grades which did not even take into account my attendance or endo!
And between you and me, I don't think I would have done so well had it not been for my dyslexia and endo... Nothing motivates like fury to prove your circumstance and speculation wrong. My three A's were two fingers up- no, make that ten- they were ten fingers up to the world !
My A level, As and GCSE results remain to this day in the top ten moments in my life. I know it is sad, but it is the biggest victory I have ever had as a dyslexic fighting my endometriois- two fat pigeons with one grenade. I do not think I have cired so much with happiness as I have done at these times.
Alice 1, Endo 0.
And this relates to more than results, it may be a target you are working towards, not having one day off sick, not eating chocolate for lent... You pick your victories to be won.
I will always remember my AS year. It is only because of the amazing support network of friends around me that kept me strong, laughing and willing to fight. To my Drama Girls- you are the best. To the extent where even my grandchildren will even be grateful for you all. I hope bit my bit I repay the strength and loyalty you showed me.
It is very easy when you life seems to be taking a nose dive to not fully appreciate what others are doing for you. Take a moment to step back and be greatful for those who will listen and whipe away the tears. Even if it is just your mummy. Likewise, if you are a friend of a sufferer, here is a thank you from me: 'Friendship consists in forgetting what one gives and remembering what one receives.'
During my final A level year I stripped my life down to the bare necessities so all my energy could be focused on 'The Rime of the Ancient Mariner' and 'Meta Ethics'. I waitressed on a saturday night, but months before exams I stopped and sacrificed almost everything extra curricular, including relationships I wouldn't have had done otherwise. It was very tough, and in some aspects I guess I was selfish, but I knew it was for the greater good of my life, the best for my own self interest and I feel like maybe I suffer and sacrifice enough, I deserved the basic right to fulfil my potential to the best I can. And so can you. Sorry if you were a victim of my endo too.
When I get on my soap box, or am philosophizing over relationships, I ensured whilst I was at school to keep my distace and for my heart to be guarded most hostile, because I have to peserve my emotional health otherwise I would have lost everything. My stong mental attitide it what allows my life to be as good as it is, sometimes you have to lead by your head and protect yourself because when you have endo, you are batteling enough as it is. To add heart break to the mix is unfair on yourself and unrealistic. Put yourself first, it will not last forever. Besides, you friends are your real soul mates. For now at least. There will come a time where we can trust someone enough to look after our hearts.
What you must realise girls, is that I do not regret how I dealt with my teenage years. I certainly would not have atchieved what I have and be who I am. Okay I may have gone to one or two more rubbish parties (I never missed the good ones) and missing a few months wages. At the time it was a discipline and felt terribly unfair, and a seemingly extreme attitude but in hindsight it was so worth it, and luckily I had a strong enough mother who was wise enough knew it would be, I was mature enough to trust her. Do not get me wrong, I still had a life, it was just more focused and on fewer things. Also, in the scale of your life, it is literally three months for the rest of your life.
The way you have to think about it is:
'Have you ever noticed how, if you neatly fold everything into a suitcase you can fit so much more in that if you just ram it in?'
Well life is like that too. Organise for success.
And anyone that knows me will tell you I am naturally one of the least organised people they know. I regularly would turn up to school without my school bag, lunch and PE kit. I don't know what I expected to do on those days. However you can curb and mould your habits, it is possible to be the person who has 7 jobs and volunteers and sees all her friends almost once a week, whilst being the same person who gets the wrong train every flipping time. It is about planning maturely, sensibly and rationally, and decided what is important to you. And then if you are me, allowing the wind to take the rest, because you know if you haven't organised it then it isn't of great importance to your greater good, thus you can just roll with it. Besides the best times we have are spontaneous, right?
Likewise, if you have free periods or free time, write a tick list. Do not sit around chatting to your mates or on Facebook, instead reply to emails, write that essay and get things done. Tick lists are the only thing keeping my astonishingly scatty brain on the straight and narrow.
I have on going tick lists, weekly tick lists, tick lists of tick lists. I have tick lists for this flight, for this blog. I have tick lists for when I go into Lutterworth to run errands, otherwise I will walk round confused and in my pyjamas clutching at cats talking to myself. You get the picture.
And before you think I'm one of those annoying-to-the-rest-of-us regimented people who live by their diary, alas, I am not. There is always room for fun and spontaneity because (and this is between you and me) the tick lists are only a piece of paper. 'Life is about finding a ballance.'
And whilst I am thinking about it, another gift of my endometriosis is that I have had to become very very organised and honest. Naturally as you can see, I am useless at organisation (I blame the dyslexia) and I find it hard to show weakness, like when I am in pain or upset. However in order for me to get the best out of my life and situation, I have learnt both. Proof that you can change for the better if you want to enough.
I dare you to write a list of at least three positives in your life born out of adversity. Even if it was a friend you made.
Right now the twilight sky above the clouds is stunning. So before I get too soppy and Romantic on you, I shall bid farewell. If you are a teen and reading this blog, read my 'Teen living with endo' blog which is more extensive one about 'Being a teen with endo.' Maybe you will pick something up, or just reading my story know you are not alone.
I hope this was of some use, I am always here to moan to- alice.smith@marriottfarm.co.uk
All my love,
Al XXX
Wednesday 26 March 2014
Sunday 23 March 2014
Day 58, The Issue of Fertility
Endo 365
Me again, I started this blog still on the plane and am finishing it now on the beach with a mojito, life isn't so bad eh?
One of the only things (infuriatingly) ever promoted about endometriosis is that it is the biggest cause of infertility. This is a scary fact. It is something that has been on my conscious and many more like me, probably as soon as we were diagnosed. Ten years ago 40% of women with endo could not conceive, today it has dropped to 25% of women and medicine is advancing at such a rate we really never know what the future holds. Initially reading online about women who wanted to kill themselves because they were in so much pain every day and their husbands had left them because they couldn't have children is never nice, especially when the thing at the epicentre of her troubles is something you have in common: endometriosis.
This is a heavy subject, so I shall start with a light anecdote:
One one of my many teary meetings with my gynaecologist (that department must go through SO many tissues) my mother and I were putting forward our heartfelt urge for him to open me up and see where my endo had grown since my diagnosis because- and I quote- "I (sob sob) am becoming increasingly worried (sniff sob sniff) about my (deep breath) fidelity issues"
I was a little shocked when both he and my mother burst out laughing with him replying: "I cannot guarantee your fidelity but I can help your fertility."
For those of you like me who didn't know the difference:
Fidelity: Sexual faithfulness an loyalty to a partner.
Fertility: The quality of being reproductive.
Typical Alice, I have never got the two mixed up since.
I hate admitting this as a (not so) closet feminist however the thought of being infertile left me feeling robbed of my role as a woman. I was only 15! Likewise, I questioned whether anyone would ever want to marry me incase we couldn't have children. You sane readers will be pleased to know this is no longer my school of thought. Not that no one will want to marry me (I unsure whether there is anyone crazy/ brave enough) but that I don't feel stripped on my femininity because of this condition anymore.
Knowing me I probably couldn't even spell 'infertility' back then. And it would certainly be a decade before I let anybody even try!
The more and more I advertise endo in my life, women come to me with tears in their eyes giving me great big hugs. They then reveal that they have/ had endo and they were told they would never have kids, and went on to have 5 strapping boys. And so on.
It is true, that unfortunately some women with endo will be infertile, however that is not everyone and not if it is caught early enough. That is why we need a qucker diagnosis time, women are being left baby-less due to incompetence and that is just not acceptable.
Now as the eldest and most protective sibling of the Smith clan, those close to me know how much the thought of being infertile destroyed me. Naturally I am very good with babies but I am unfortunately far more withdrawn now when holding them because sometimes it still hurts. People would attempt to try and pasify me by saying 'they're is always adoption or IVF, or Surrogacy.' Which is true, but at the time I secretly would think I don't want any of that. It is selfish but I believe it to be a case of 'you want what you can't have.' I wanted to have my own child, to see my husbands eyes reflected in the face I made. I want to feel my baby grow inside of me.
But these thoughts are poisonous, dangerous and the least productive thoughts you can allow to linger in you conscious. Do not allow these deamonds find a home: it is beyond heartbreaking. Until we try, no expert in the world can say conclusively: mirricales happen every day. And do not let anybody tell you any different or think any differently because we still do not fully understand this disease, it is not an exact science. That is one of the bonus' to our lack of knowledge, in some very minute ways ignorance is bliss.
However it is really lovely to have friends that dead seriously say they would be a surrogate mother for you in a heat beat. And mean it, that is possibly the most special thing you can ever o for a person, so thank you, you little angels.
Rationally, when I began to listen to my mother, I realised that my fertility is ALMOST defiantly fine a) because the consultants said so, (thats quite a good one) b) because my endo was diagnosed and treated early enough (still tool two and a half years) c) we don't know what the future holds, medicine will be so much more advanced- who knows, by the time I get round to having babies there may be a cure for endometriosis.
And d) Something very special happened to me in February 2013- I was on a school trip, touring the north of India. We were in Dharmsala, on the Tibetan border in the Himalayan Mountains. We visited the Dalai Lama's monastery, walked through the sacred mountains and finally, visited his school for orphans and Tibetan refugees who would never again be reunited with their family. When I saw these children, toddlers and babies without a mummy, without a place they could call their home, I could not stop silent tears rolling down my cheeks. I really am not a cryer, so these gentle drops were a strange sensation to me; I felt like a wight had been lifted.
I had an astonishing realisation that these beautiful, precious children need what I want to give. I felt such love for them that I realised it doesn't matter whether they cary my genes or not. This realisation brought such gushing relief, for the first time since I read those poisoned blogs, I realised I would be okay. As long as there are children in this world that need a loving home, I will be fulfilled as a mother. The rest is science.
But this takes time and is your own journey (I had that word) to realisation I wish everyone could feel my relief, I with the younger me knew what I do now.
Of course there are horror stories out there, but do not go looking for them because that is their story, not yours. It is your duty to yourself to ensure you have the best treatment. That is all. You give yourself the best chance, eat the right things, remain happy, and the rest will take place. For all we know, we may be perfectly fertile but our husbands may not be. You cannot predict or manufacture the future.
It is important to bare in mind there is always choice, there is always a solution.
Be easy on yourself, look after yourself and live with hope as your secret weapon,
All my love,
The ever fertile Alice XXX
Me again, I started this blog still on the plane and am finishing it now on the beach with a mojito, life isn't so bad eh?
One of the only things (infuriatingly) ever promoted about endometriosis is that it is the biggest cause of infertility. This is a scary fact. It is something that has been on my conscious and many more like me, probably as soon as we were diagnosed. Ten years ago 40% of women with endo could not conceive, today it has dropped to 25% of women and medicine is advancing at such a rate we really never know what the future holds. Initially reading online about women who wanted to kill themselves because they were in so much pain every day and their husbands had left them because they couldn't have children is never nice, especially when the thing at the epicentre of her troubles is something you have in common: endometriosis.
This is a heavy subject, so I shall start with a light anecdote:
One one of my many teary meetings with my gynaecologist (that department must go through SO many tissues) my mother and I were putting forward our heartfelt urge for him to open me up and see where my endo had grown since my diagnosis because- and I quote- "I (sob sob) am becoming increasingly worried (sniff sob sniff) about my (deep breath) fidelity issues"
I was a little shocked when both he and my mother burst out laughing with him replying: "I cannot guarantee your fidelity but I can help your fertility."
For those of you like me who didn't know the difference:
Fidelity: Sexual faithfulness an loyalty to a partner.
Fertility: The quality of being reproductive.
Typical Alice, I have never got the two mixed up since.
I hate admitting this as a (not so) closet feminist however the thought of being infertile left me feeling robbed of my role as a woman. I was only 15! Likewise, I questioned whether anyone would ever want to marry me incase we couldn't have children. You sane readers will be pleased to know this is no longer my school of thought. Not that no one will want to marry me (I unsure whether there is anyone crazy/ brave enough) but that I don't feel stripped on my femininity because of this condition anymore.
Knowing me I probably couldn't even spell 'infertility' back then. And it would certainly be a decade before I let anybody even try!
The more and more I advertise endo in my life, women come to me with tears in their eyes giving me great big hugs. They then reveal that they have/ had endo and they were told they would never have kids, and went on to have 5 strapping boys. And so on.
It is true, that unfortunately some women with endo will be infertile, however that is not everyone and not if it is caught early enough. That is why we need a qucker diagnosis time, women are being left baby-less due to incompetence and that is just not acceptable.
Now as the eldest and most protective sibling of the Smith clan, those close to me know how much the thought of being infertile destroyed me. Naturally I am very good with babies but I am unfortunately far more withdrawn now when holding them because sometimes it still hurts. People would attempt to try and pasify me by saying 'they're is always adoption or IVF, or Surrogacy.' Which is true, but at the time I secretly would think I don't want any of that. It is selfish but I believe it to be a case of 'you want what you can't have.' I wanted to have my own child, to see my husbands eyes reflected in the face I made. I want to feel my baby grow inside of me.
But these thoughts are poisonous, dangerous and the least productive thoughts you can allow to linger in you conscious. Do not allow these deamonds find a home: it is beyond heartbreaking. Until we try, no expert in the world can say conclusively: mirricales happen every day. And do not let anybody tell you any different or think any differently because we still do not fully understand this disease, it is not an exact science. That is one of the bonus' to our lack of knowledge, in some very minute ways ignorance is bliss.
However it is really lovely to have friends that dead seriously say they would be a surrogate mother for you in a heat beat. And mean it, that is possibly the most special thing you can ever o for a person, so thank you, you little angels.
Rationally, when I began to listen to my mother, I realised that my fertility is ALMOST defiantly fine a) because the consultants said so, (thats quite a good one) b) because my endo was diagnosed and treated early enough (still tool two and a half years) c) we don't know what the future holds, medicine will be so much more advanced- who knows, by the time I get round to having babies there may be a cure for endometriosis.
And d) Something very special happened to me in February 2013- I was on a school trip, touring the north of India. We were in Dharmsala, on the Tibetan border in the Himalayan Mountains. We visited the Dalai Lama's monastery, walked through the sacred mountains and finally, visited his school for orphans and Tibetan refugees who would never again be reunited with their family. When I saw these children, toddlers and babies without a mummy, without a place they could call their home, I could not stop silent tears rolling down my cheeks. I really am not a cryer, so these gentle drops were a strange sensation to me; I felt like a wight had been lifted.
I had an astonishing realisation that these beautiful, precious children need what I want to give. I felt such love for them that I realised it doesn't matter whether they cary my genes or not. This realisation brought such gushing relief, for the first time since I read those poisoned blogs, I realised I would be okay. As long as there are children in this world that need a loving home, I will be fulfilled as a mother. The rest is science.
But this takes time and is your own journey (I had that word) to realisation I wish everyone could feel my relief, I with the younger me knew what I do now.
Of course there are horror stories out there, but do not go looking for them because that is their story, not yours. It is your duty to yourself to ensure you have the best treatment. That is all. You give yourself the best chance, eat the right things, remain happy, and the rest will take place. For all we know, we may be perfectly fertile but our husbands may not be. You cannot predict or manufacture the future.
It is important to bare in mind there is always choice, there is always a solution.
Be easy on yourself, look after yourself and live with hope as your secret weapon,
All my love,
The ever fertile Alice XXX
Wednesday 19 March 2014
Day 54, Being a Teen with Endo
Endo 365
Let's face it, growing up isn't easy for anyone. We are constantly growing in awareness and trying to make sense of the world in to which we are emerging. We learn that the world is not all sandpits and nap time, it is tough and at times frustrating and the greatest injustices are those we experience for we know no greater burdens than the ones we carry on our own back.
This blog is dedicated to the younger Alice and to many more like me. I will explain to you what it is like being a teenager with endometriosis. In the words of MJ 'you are not alone'
Incase you didn't know, I am 18 years old and have been suffering with endometriosis for six years now. It has been challenging, isolating, debilitating and at times, heart breaking. However time really is the best healer and you learn to live with it, because well, that is all you can do. You may as well make the most of it, right?
My initial reaction to diagnosis was crying with happiness. We finally knew what was wrong and now we can fix it. However when I began to read blogs and horror stories online a dark realisation soon overcast my previously optimistic hopes. Reading about women who wanted to kill themselves because they were in so much pain every day and their husbands had left them because they couldn't have children is never nice, especially when the thing at the epicentre of her troubles is something you have in common: endometriosis.
Young, impressionable, ill informed and increasingly isolated, this was a very very scary prospect and something near impossible to digest. It quickly seemed that endometriosis was a nasty, malicious, potentially life devastating sentence. And indeed it can be those things and many more, but that is not why I am writing.
The more I read the more it was being nicknamed 'The Working Woman's Syndrome'a punishment for women who had chosen careers over child bearing and thus were struck down with this for not using their uterus for what God intended.' Ignorance is the greatest provoker isn't it? How about this you particle supporting baboons, maybe they ended up with careers because they couldn't have children, over 50% of women have their first experience of endo before they are 25. But what do I know.
Anyway, rant over, apologies.
As I was saying, having this crippling condition from a young age when society believes it to be only for older women is incredibly isolating for many reasons: I thought I was an outlier (not for the first time) but I now know I am not. The more involved I become with Endometriosis UK the more lovely ladies I meet with this condition who were my age and younger. Never feel alone because it is quite simply a fallacy. There are 1.5 million alone of us in the UK. Secondly, I was so isolated because so few people knew it even existed. That is true for some people, but it is changing. We can make a change. Everyone on my social media and in my real life knows exactly what it is, and my friends friends do too. You have help this movement, be a cog to our clock.
With time comes perspective of these things, you feel alone at the time but when you make it to the other side believe that you wont. Come to the Endometriosis UK event and make friends, attend or host a support group, scream 'Endometriosis' from your Town Hall! You see where I am going with this. If you are reading this it means you are fairly techno-literate. There is a huge endo community on twitter and Facebook and even Instagram! Email me, I will always reply. It is: alice.smith@marriottfarm.co.uk
One of the things that takes years to understand and then perfect is pain management. First, you must learn your body which is part of your adolescence anyway, you just get a crash course. When you feel great amounts of pain from a young age it is quite a hard thing to contextualise: it is scary because it isn't normal to take ambulances from school instead of the bus. You fine tune instincts before you peers about how your body feels, what it needs and wants. You know when your kidneys aren't working properly because you have poisoned them with the painkillers you take to ensure you can manage going to school. From a younger age you are far more intuitive about your body as a machine than your peers. It's an unfair thing, but it isn't a bad thing. If this interests you, read my blog on 'Pain Management.'
Knowing your body has it's advantages, I now know within two minutes whether it is the sort of pain that will escalate into needing morphine, so I can act appropriately before ending up in A&E. I can identify and counteract what and why parts of my body ache and have the knowledge of how to sort it. Meanwhile my peers are still confused and (rightly) complaining. We soon know what is wrong and we know how to sort it. That is a gift in life.
Naturally I am a busy bee. I love balancing 7 plates whilst running a marathon. I thrive whilst multi tasking. However between the pain and the medication, I ended up with chronic fatigue from the age of 14 to 17. For those of you unaware of what it is like, I want to say you feel like a zombie. No energy, no life and lots of grunting. You can do things to help it, but what is hard to explain is that irregardless of whether you have 12 hours sleep a night, you will still fall asleep in maths. And physics. And deffenatley French. Sometimes you have to cancel last minute on social engagements because you're whipped out. And that is hard for people to understand because to them, you are a teenager and thus in your prime years. You should be able to do all things and with enthusiasm!
It got to the stage for me where I stopped everything that wasn't school. I slept and did work and quite often at lunchtime I would go to the medical room and have a nap. You have to make choices about what is important and neccicary to your life, then let the rest go. I know this is unfair, but if this is the position you are in, accept it. Learn your body and start a regime that works to your benefit.
Being diagnosed with dyslexia at the age of 6, I have always had to fight and work harder to fulfil my academic potential. Because of this I was never the typical child hating school; Instead I actually valued it. I believe that education is a fundamental right as a human being, the best tool to be equipped with and A legacy to install in your children. However I also believe in this world it is a privilege because not everyone is born into a society like ours, where as a female you would be able to write a blog, and indeed read a blog. We are so lucky that irrigardless of sex or wealth, we have access to a free, safe and comprehensive education.
Because of this I chose to focus on my schooling and sat my GCSE's with just over a years attendance across the two. Likewise I missed a lot in my AS year at A level. But thankfully I had selfless and devoted teachers who would sit with me in their lunch hour and the like to catch me up. It is good having goals when you are going through hell- pick them and work hard for them, that way you forget you are walking on hot coals to get there. And you know what, irregardless of my dyslexia and attendance- I still did okay. Mores the point, I didn't let any ailment win. It doesn't matter whether they were straight A*'s or straight d's because I succeeded where many would have taken the easy route and dropped. It it matters to you, work for it. If it upsets you, smile at it. If it scares and intimidates you, run at it.
Obviously not everyone has to be as extreme as miss competitive here when managing school work and endo. You have to calculate how much you are willing to sacrifice for school, what it is worth to you. A good way to catch up is getting your friends to co-teach you. It is good for their revision to go over it with you, it is social, and you're also learning. Do not leave everything to the last minute or you will feel like you are drowning. Try and do half an hour everyday.
During my time I learnt the best way for my body to combat the fatigue was regular exercise, sleep (obviously), the FODMAPs diet and most importantly: positive thinking. It is very easy to feel down when you're inside, horizontal on the sofa like yesterday, and the day before. But use it as productive down time, become a film critique, read books, write hoax answers on yahoo answers!
The next one is so unfair at the time, but ultimately is such a blessing. When you have real issues to worry about, when you are carrying real burdens and fighting real battles, the typical indulgent teenage worries are irrelevant to you. And it feels unfair that you have to worry about whether you will ever have children whilst your best friend is worrying about what colour to dye their hair. But that is just the way it is. Accepting it will be the biggest weight off your shoulders.
First you must of course mourn for the injustice of it, scream into your mothers chest whilst she holds you, cry yourself to sleep and hold your friends hand when you have just had enough. It sucks, we haven't done anything to warrant this but then nor have the babies who were born HIV positive. Endometriosis is isolating. Especially when you are young and it is embarrassing, and you're not sure who you are let alone how you deal with this. But I will let you into a secret, of all the friends that seek my council, all of them feel alone in some aspect. I guess ironically we are all together in feeling isolated and that no one can understand. How very teenage and western of our little indulgent selves.
Plus, we are spoilt growing up in England because we experience a false sense of absolute justice and there is nothing your parents cannot right. But in the real world unfortunately it isn't just and it isn't fair. No matter how much my daddy loves me it will not take away my endo. It is a fact of life.
Trust me, in the end, having that perspective allows you to contextualise what is a real issue and what is worthy of worry, whilst being able letting the more futile things wash over you because you know the bigger picture. If you like, we have seen the light from Plato's cave meanwhile our peers still stare at shadows.
Because of Endo, treatment and the fatigue, I have missed out on many 'typical' teenage experiences. I was robbed of my right to petty, futile and magnificently normal every day problems. I was robbed of my right to go to school and have the social life I naturally crave and have now, I was robbed of the innocence and ignorance teenage years warrant. I grew up too quickly. Having old woman hormones I would never have that crushing first teenage love because the hormones just weren't there- and I'm naturally hostile enough towards potential male suitors as it is !
It is hard, but there is always a way to manage because that's what we have to do. We have to cope because running away will not change the fundamental facts- as soon as you accent this, you have nothing to lose by empowering yourself to work hard, be positive and make the best of the situation.
It is no picknick. It is nothing we would choose to do. It is so impossibly lonely. But You are bigger than your problems, I promise. And you are not alone, things could be worse, and in the end, they will be okay as well.
Hope, think positively, and think globally
All my love,
Alice XXX
Let's face it, growing up isn't easy for anyone. We are constantly growing in awareness and trying to make sense of the world in to which we are emerging. We learn that the world is not all sandpits and nap time, it is tough and at times frustrating and the greatest injustices are those we experience for we know no greater burdens than the ones we carry on our own back.
This blog is dedicated to the younger Alice and to many more like me. I will explain to you what it is like being a teenager with endometriosis. In the words of MJ 'you are not alone'
Incase you didn't know, I am 18 years old and have been suffering with endometriosis for six years now. It has been challenging, isolating, debilitating and at times, heart breaking. However time really is the best healer and you learn to live with it, because well, that is all you can do. You may as well make the most of it, right?
My initial reaction to diagnosis was crying with happiness. We finally knew what was wrong and now we can fix it. However when I began to read blogs and horror stories online a dark realisation soon overcast my previously optimistic hopes. Reading about women who wanted to kill themselves because they were in so much pain every day and their husbands had left them because they couldn't have children is never nice, especially when the thing at the epicentre of her troubles is something you have in common: endometriosis.
Young, impressionable, ill informed and increasingly isolated, this was a very very scary prospect and something near impossible to digest. It quickly seemed that endometriosis was a nasty, malicious, potentially life devastating sentence. And indeed it can be those things and many more, but that is not why I am writing.
The more I read the more it was being nicknamed 'The Working Woman's Syndrome'a punishment for women who had chosen careers over child bearing and thus were struck down with this for not using their uterus for what God intended.' Ignorance is the greatest provoker isn't it? How about this you particle supporting baboons, maybe they ended up with careers because they couldn't have children, over 50% of women have their first experience of endo before they are 25. But what do I know.
Anyway, rant over, apologies.
As I was saying, having this crippling condition from a young age when society believes it to be only for older women is incredibly isolating for many reasons: I thought I was an outlier (not for the first time) but I now know I am not. The more involved I become with Endometriosis UK the more lovely ladies I meet with this condition who were my age and younger. Never feel alone because it is quite simply a fallacy. There are 1.5 million alone of us in the UK. Secondly, I was so isolated because so few people knew it even existed. That is true for some people, but it is changing. We can make a change. Everyone on my social media and in my real life knows exactly what it is, and my friends friends do too. You have help this movement, be a cog to our clock.
With time comes perspective of these things, you feel alone at the time but when you make it to the other side believe that you wont. Come to the Endometriosis UK event and make friends, attend or host a support group, scream 'Endometriosis' from your Town Hall! You see where I am going with this. If you are reading this it means you are fairly techno-literate. There is a huge endo community on twitter and Facebook and even Instagram! Email me, I will always reply. It is: alice.smith@marriottfarm.co.uk
One of the things that takes years to understand and then perfect is pain management. First, you must learn your body which is part of your adolescence anyway, you just get a crash course. When you feel great amounts of pain from a young age it is quite a hard thing to contextualise: it is scary because it isn't normal to take ambulances from school instead of the bus. You fine tune instincts before you peers about how your body feels, what it needs and wants. You know when your kidneys aren't working properly because you have poisoned them with the painkillers you take to ensure you can manage going to school. From a younger age you are far more intuitive about your body as a machine than your peers. It's an unfair thing, but it isn't a bad thing. If this interests you, read my blog on 'Pain Management.'
Knowing your body has it's advantages, I now know within two minutes whether it is the sort of pain that will escalate into needing morphine, so I can act appropriately before ending up in A&E. I can identify and counteract what and why parts of my body ache and have the knowledge of how to sort it. Meanwhile my peers are still confused and (rightly) complaining. We soon know what is wrong and we know how to sort it. That is a gift in life.
Naturally I am a busy bee. I love balancing 7 plates whilst running a marathon. I thrive whilst multi tasking. However between the pain and the medication, I ended up with chronic fatigue from the age of 14 to 17. For those of you unaware of what it is like, I want to say you feel like a zombie. No energy, no life and lots of grunting. You can do things to help it, but what is hard to explain is that irregardless of whether you have 12 hours sleep a night, you will still fall asleep in maths. And physics. And deffenatley French. Sometimes you have to cancel last minute on social engagements because you're whipped out. And that is hard for people to understand because to them, you are a teenager and thus in your prime years. You should be able to do all things and with enthusiasm!
It got to the stage for me where I stopped everything that wasn't school. I slept and did work and quite often at lunchtime I would go to the medical room and have a nap. You have to make choices about what is important and neccicary to your life, then let the rest go. I know this is unfair, but if this is the position you are in, accept it. Learn your body and start a regime that works to your benefit.
Being diagnosed with dyslexia at the age of 6, I have always had to fight and work harder to fulfil my academic potential. Because of this I was never the typical child hating school; Instead I actually valued it. I believe that education is a fundamental right as a human being, the best tool to be equipped with and A legacy to install in your children. However I also believe in this world it is a privilege because not everyone is born into a society like ours, where as a female you would be able to write a blog, and indeed read a blog. We are so lucky that irrigardless of sex or wealth, we have access to a free, safe and comprehensive education.
Because of this I chose to focus on my schooling and sat my GCSE's with just over a years attendance across the two. Likewise I missed a lot in my AS year at A level. But thankfully I had selfless and devoted teachers who would sit with me in their lunch hour and the like to catch me up. It is good having goals when you are going through hell- pick them and work hard for them, that way you forget you are walking on hot coals to get there. And you know what, irregardless of my dyslexia and attendance- I still did okay. Mores the point, I didn't let any ailment win. It doesn't matter whether they were straight A*'s or straight d's because I succeeded where many would have taken the easy route and dropped. It it matters to you, work for it. If it upsets you, smile at it. If it scares and intimidates you, run at it.
Obviously not everyone has to be as extreme as miss competitive here when managing school work and endo. You have to calculate how much you are willing to sacrifice for school, what it is worth to you. A good way to catch up is getting your friends to co-teach you. It is good for their revision to go over it with you, it is social, and you're also learning. Do not leave everything to the last minute or you will feel like you are drowning. Try and do half an hour everyday.
During my time I learnt the best way for my body to combat the fatigue was regular exercise, sleep (obviously), the FODMAPs diet and most importantly: positive thinking. It is very easy to feel down when you're inside, horizontal on the sofa like yesterday, and the day before. But use it as productive down time, become a film critique, read books, write hoax answers on yahoo answers!
The next one is so unfair at the time, but ultimately is such a blessing. When you have real issues to worry about, when you are carrying real burdens and fighting real battles, the typical indulgent teenage worries are irrelevant to you. And it feels unfair that you have to worry about whether you will ever have children whilst your best friend is worrying about what colour to dye their hair. But that is just the way it is. Accepting it will be the biggest weight off your shoulders.
First you must of course mourn for the injustice of it, scream into your mothers chest whilst she holds you, cry yourself to sleep and hold your friends hand when you have just had enough. It sucks, we haven't done anything to warrant this but then nor have the babies who were born HIV positive. Endometriosis is isolating. Especially when you are young and it is embarrassing, and you're not sure who you are let alone how you deal with this. But I will let you into a secret, of all the friends that seek my council, all of them feel alone in some aspect. I guess ironically we are all together in feeling isolated and that no one can understand. How very teenage and western of our little indulgent selves.
Plus, we are spoilt growing up in England because we experience a false sense of absolute justice and there is nothing your parents cannot right. But in the real world unfortunately it isn't just and it isn't fair. No matter how much my daddy loves me it will not take away my endo. It is a fact of life.
Trust me, in the end, having that perspective allows you to contextualise what is a real issue and what is worthy of worry, whilst being able letting the more futile things wash over you because you know the bigger picture. If you like, we have seen the light from Plato's cave meanwhile our peers still stare at shadows.
Because of Endo, treatment and the fatigue, I have missed out on many 'typical' teenage experiences. I was robbed of my right to petty, futile and magnificently normal every day problems. I was robbed of my right to go to school and have the social life I naturally crave and have now, I was robbed of the innocence and ignorance teenage years warrant. I grew up too quickly. Having old woman hormones I would never have that crushing first teenage love because the hormones just weren't there- and I'm naturally hostile enough towards potential male suitors as it is !
It is hard, but there is always a way to manage because that's what we have to do. We have to cope because running away will not change the fundamental facts- as soon as you accent this, you have nothing to lose by empowering yourself to work hard, be positive and make the best of the situation.
It is no picknick. It is nothing we would choose to do. It is so impossibly lonely. But You are bigger than your problems, I promise. And you are not alone, things could be worse, and in the end, they will be okay as well.
Hope, think positively, and think globally
All my love,
Alice XXX
Friday 14 March 2014
Day 43, The Million Woman March
Endo 365
Yesterday my family and I, and maybe a few reading this, along with about 150 others marched through London to raise awareness for Endometriosis. What a day.
The Sun was Shining. We were all dressed in yellow head bands, Endometriosis UK t-shits and sashes. It was really lovely and so nice to speak to so many other women who understand exactly what no one else does. Its like the worse in joke in the world !
It was good for everyone I think to feel like things are finally happening, and it is amazing to be part of that ripple, that movement.
We started in the Kensington Gardens and marched for around 3 hours (including lots of toilet and ice-cream breaks) with a group photo and speech from our Chair which actually brought a tear to my cold souled eyes.
I felt liberated at the end of the day, and strangely American- like I wanted to 'woop' and 'hollar' and jump in the air and tell that nazi in my stomach to take a running jump.
Another aspect that makes me so excited about this campaign is that it is not just us in London. Yesterday, world wide, there were 46 countries marching in 53 cities, in all 6 inhabited continents, and in some countries you many not expect. This really was a global campaign to 'Educate, Empower and Effect.' I am proud to announce that these following countries all held marches, what great global strength:
Argentina
Australia
Bahrain
Belgium
Brazil
Canada
Chilli
Denmark
Finland
France
Germany
Greece
Hungary
Iceland
India
Iran
Ireland
Israel
Italy
Jamaica
Kuwait
Malaysia
Malta
Mexico
New Zealand
Nigeria
Northern Island
Norway
Panama
Peru
Philippians
Poland
Portugal
Puerto Rico
Russia
Saudi Arabia
Serbia
Spain
Sweden
Switzerland
The Netherlands
Trinidad and Tobago
Turkey
United Arab Emirates
United Kingdom
Unites States of America
Is it just me or is that cool?
Here is a recap of the march on the Endo UK website: http://endometriosis-uk.org/news/beautiful-day-beautiful-march-million-woman-march-endometriosis-37214?utm_source=Twitter&utm_medium=Social&utm_campaign=MWMday#.UyM7faEgGSM
"It was really lovely being among people who know exactly what you're going through and to all be marching towards the same goal."
What we did at the march, making a statement, showing sorority and strength, showing fight, determination and grit, it is something that we probably all do anyway every day. But lets not allow it to stop with us. If you are talking about periods, pain and endometriosis, encourage those loved ones to do the same as a matter of duty and of loyalty. I know for a fact my best friend suze talks to everyone who will listen about my endo and all the shocking, scary and largely funny stories we have accumulated.
I am not saying we talk about the female mysticals 24/7, I am simply saying if the topic arises, do not dispare, blush and avoid the topic. Have courage and speak truthfully. If you believe in what you are saying and speak with courage, you will never look or feel silly, where as if you deliver meekly with awkwardness on your face, it will be contagious.
If you haven't worked out by my occasionally hyperbolic language, I am a thespian (Drama Kid). I have had some fabulous teachers during my education and the last, and I think the best, had a saying. I am going to let you into a secret now. I think about this saying almost everyday of my life; whether I am going on this morning, or conquering a silly fear of which I have many: from singing in front of people or tomatoes (yep the red stowaways in salads).
The saying it this:
'You have just got to break through the twat barrier.'
By 'twat barrier' I think she means that which lies beyond our comfort zone. Because that is how we feel when we go beyond our comfort zone isn't it? Like a spare dick at a wedding/ scared/ vulnerable/ a bit of a tool. But life is about pushing ourselves, conquering and then claiming new territory for our comfort zone. We owe it to ourselves to push ourselves and achieve things we didn't realise were possible.
My favourite bit about the quotation is the idea of 'breaking' through, like we are not just dipping our toe in the water but 'top bombing' into it with your phone, your heart and the kitchen sink. Everything is done with the whole of your being, gumption and conviction.
This doesn't have to be a grand gesture, climbing a mountain or sky diving. It can also be things that we as humans find equally difficult; introducing yourself to everyone in the room networking or just talking about periods.
I also like the idea of there being a physical 'twat barrier' opposed to 'comfort zone' because sometimes it really does feel like there is a physical barrier in front of you. But there really is not, it is all in our heads, you can break through.
Indeed, life does not begin at the end of your comfort zone, but life begins when you break through the twat barriers.
And remember, 'anyone who says they are not a twat, is in denial.'
I am doing okay. I am starting to get slightly disheartened because I am still not back at work and am in increasing pain every day and had a full blown pain attack on tuesday, and would have been in A&E had it not been for the stock of strong painkillers I have left over from my operation, my tens machine and mentally ensuring I didn't become panicked but (like a jedi) manipulated my pain and overcame it mentally. Then the morphine kicked in and I started seeing unicorns. But I am happy, well fed and well loved so all is good.
Be smart, be weird and break through the twat barrier every day,
All my love,
Al XXX
Yesterday my family and I, and maybe a few reading this, along with about 150 others marched through London to raise awareness for Endometriosis. What a day.
The Sun was Shining. We were all dressed in yellow head bands, Endometriosis UK t-shits and sashes. It was really lovely and so nice to speak to so many other women who understand exactly what no one else does. Its like the worse in joke in the world !
It was good for everyone I think to feel like things are finally happening, and it is amazing to be part of that ripple, that movement.
We started in the Kensington Gardens and marched for around 3 hours (including lots of toilet and ice-cream breaks) with a group photo and speech from our Chair which actually brought a tear to my cold souled eyes.
I felt liberated at the end of the day, and strangely American- like I wanted to 'woop' and 'hollar' and jump in the air and tell that nazi in my stomach to take a running jump.
Another aspect that makes me so excited about this campaign is that it is not just us in London. Yesterday, world wide, there were 46 countries marching in 53 cities, in all 6 inhabited continents, and in some countries you many not expect. This really was a global campaign to 'Educate, Empower and Effect.' I am proud to announce that these following countries all held marches, what great global strength:
Argentina
Australia
Bahrain
Belgium
Brazil
Canada
Chilli
Denmark
Finland
France
Germany
Greece
Hungary
Iceland
India
Iran
Ireland
Israel
Italy
Jamaica
Kuwait
Malaysia
Malta
Mexico
New Zealand
Nigeria
Northern Island
Norway
Panama
Peru
Philippians
Poland
Portugal
Puerto Rico
Russia
Saudi Arabia
Serbia
Spain
Sweden
Switzerland
The Netherlands
Trinidad and Tobago
Turkey
United Arab Emirates
United Kingdom
Unites States of America
Is it just me or is that cool?
Here is a recap of the march on the Endo UK website: http://endometriosis-uk.org/news/beautiful-day-beautiful-march-million-woman-march-endometriosis-37214?utm_source=Twitter&utm_medium=Social&utm_campaign=MWMday#.UyM7faEgGSM
"It was really lovely being among people who know exactly what you're going through and to all be marching towards the same goal."
What we did at the march, making a statement, showing sorority and strength, showing fight, determination and grit, it is something that we probably all do anyway every day. But lets not allow it to stop with us. If you are talking about periods, pain and endometriosis, encourage those loved ones to do the same as a matter of duty and of loyalty. I know for a fact my best friend suze talks to everyone who will listen about my endo and all the shocking, scary and largely funny stories we have accumulated.
I am not saying we talk about the female mysticals 24/7, I am simply saying if the topic arises, do not dispare, blush and avoid the topic. Have courage and speak truthfully. If you believe in what you are saying and speak with courage, you will never look or feel silly, where as if you deliver meekly with awkwardness on your face, it will be contagious.
If you haven't worked out by my occasionally hyperbolic language, I am a thespian (Drama Kid). I have had some fabulous teachers during my education and the last, and I think the best, had a saying. I am going to let you into a secret now. I think about this saying almost everyday of my life; whether I am going on this morning, or conquering a silly fear of which I have many: from singing in front of people or tomatoes (yep the red stowaways in salads).
The saying it this:
'You have just got to break through the twat barrier.'
By 'twat barrier' I think she means that which lies beyond our comfort zone. Because that is how we feel when we go beyond our comfort zone isn't it? Like a spare dick at a wedding/ scared/ vulnerable/ a bit of a tool. But life is about pushing ourselves, conquering and then claiming new territory for our comfort zone. We owe it to ourselves to push ourselves and achieve things we didn't realise were possible.
My favourite bit about the quotation is the idea of 'breaking' through, like we are not just dipping our toe in the water but 'top bombing' into it with your phone, your heart and the kitchen sink. Everything is done with the whole of your being, gumption and conviction.
This doesn't have to be a grand gesture, climbing a mountain or sky diving. It can also be things that we as humans find equally difficult; introducing yourself to everyone in the room networking or just talking about periods.
I also like the idea of there being a physical 'twat barrier' opposed to 'comfort zone' because sometimes it really does feel like there is a physical barrier in front of you. But there really is not, it is all in our heads, you can break through.
Indeed, life does not begin at the end of your comfort zone, but life begins when you break through the twat barriers.
And remember, 'anyone who says they are not a twat, is in denial.'
I am doing okay. I am starting to get slightly disheartened because I am still not back at work and am in increasing pain every day and had a full blown pain attack on tuesday, and would have been in A&E had it not been for the stock of strong painkillers I have left over from my operation, my tens machine and mentally ensuring I didn't become panicked but (like a jedi) manipulated my pain and overcame it mentally. Then the morphine kicked in and I started seeing unicorns. But I am happy, well fed and well loved so all is good.
Be smart, be weird and break through the twat barrier every day,
All my love,
Al XXX
Saturday 8 March 2014
Day 38, TEDx and This Morning
Endo 365
I am writing this blog purely because my favourite time to write is either on a plane alone on on a train on alone. There is something highly alluring to me about the solitude of travel, the space to think objectively whilst in a physical transition from departure to destination. In my little artistic brain it is like a gap in time which is separate from my life, alone to think with no distractions from your life by setting or people.
Meanwhile, In the real world, time is still on going and everybody secretly thinks Alice is a nutter.
I have been inundated with emails this week from very kind 'endosisters', mothers, husbands, siblings and friends of sufferers due to my appearance on ITV's 'This Morning' and this blog.
'This Morning' was a great experience and yes, Holly Willabooby and Scoffey are fantastic. Absolutely genuine and lovely. I could not have been better looked after and in my opinion, ITV's care is superior to the BBC...
To those of you who missed it, here is a link to my interview: http://www.itv.com/thismorning/health/endometriosis-awareness-week
En route home having been 'Brighton Bound' (capitalisation is justified due to alliteration.. My blog my rules) having partook in a TEDX talk about, you guessed it, Endometriosis.
If you read my 'p' word' blog then I hope you may have watched Carol's TEDx talk 'Little Red Riding Hood' talking about Endo. A truly inspiration, universal, accessible, entertaining, enlightening and just amazing talk and woman. I am honoured that I was asked to conclude the her fantastic talk. The response to our talk today was overwhelming with some people telling us it was their favourite talk of the day!
I am quite a fan of TED talks because they are such a brilliant and accessible way to learn about new things, and not just in your area of interest, which I believe is important when trying to keep the brain ticking over and stimulated. As you may know, I suffer bouts of insomnia due to pain- I have learnt many a thing from late night TED watching. I profess it is all usually in my familiar and favourited field of ethical and political philosophy, but I have also watched talks on the stars, psychology of shopping and even some on farming.
But do not be put off by my ridiculous obsession, TED talks are lecture-like talks given by all sorts of people on any subjects in front of a live audience and are then filmed and uploaded onto their website- or if you are a real geek like me- the app. These talks can vary from professors on Middle English at Cambridge giving lectures on Chaucer's 'Canterbury Tales', to physics, to cars, to sex, to basket weaving, to hospitality, to the environment, to endometriosis. You see you can find one on anything. If I really wanted to I could probably do a TEDX talk on why every household should keep two chickens- its a bit like pitching or purposing an idea or dissertation you see. Or just an interesting story like when my brother managed to hit himself in the face with a golf ball... having hit it forward. But that is another blog for another day.
Carol spoke with passion, conviction and emotion and I came in at the end with a few dramatic sentences. Once the video is available to me I shall upload it on here.
The most important thing was after the TEDX day was finished. Afterwards we were greeted by groups of lovely girls wanting to ask lots of questions and outraged by society that they haven't heard of this disease before. They, like most of us, feel let down by society they they knew nothing of such a common disease that effects so many people with potential devastating effects if it goes undiagnosed for too long. Some girls feel inspired to make 'Endometriosis UK' their house charity which is amazing- and not just because they are raising money but because then everyone in their house and thus the school, will then hear of endometriosis. Slowly but surely the snowball is starting to roll.
Hopefully we may see a few of them at the million woman march next thursday.
Our Chair, Trevor, who is an absolute darling and we are so lucky to have such a gentleman behind us with such vision, passion and dynamicity (Its an Alice word, derived from dynamic) spoke to me of a beautiful metaphor which I shall share with you in hope:
"The cows are leaning on the fence and it is bending. It will one day break, it is not far off, and we will be grazing in lush pastures anew."
Now I come to think about it, I guess he was referring to us (and himself) as cows, which in hindsight is hilarious (cheeky man), but I like the idea of bending the fence, a fence that is preventing and holding us back, and the grass being genuinely greener on the other side. A struggle worth the reward.
We will get there. This has been the best 'Endometriosis Awareness Week' to date, and there is no such thing as going backwards.
This week has made it apparent to me just how much DEMAND there is for endometriosis to be spoken about, be it now the endless and brilliant women who have emailed me having watched 'This Morning' thanking me for sharing my story and speaking up for endo, or the girls who where so grateful to have been educated about a condition they never realised existed. Both are our 'target markets', and I am compelled to do as much as I can, meet and surpass demand if you like.
It is rather daunting because there is so much work to be done. And it is always against the tide because no one wants to talk about periods. But I know this is a worthy cause and I want to give the fourteen year old Alice hope, a role model and permission to talk to others about it and not be embarrassed or to ever be in a position where she may feel isolated by this bitch of a condition.
Thank you so much for your emails, this week has been overwhelming. Thank you for sharing your stories with me, please do not stop, I will always reply. Except for my brothers friends. You can stop emailing me, squirts.
I shall repeat on my blog to what I say to everyone who emails me, I am not doing anything special right now, you reading this can make as bigger impact as I am. You can share this blog with one other person, or donate to the 'Endometriosis UK' website, or join us in the Million Woman March, or tell your friend what endometriosis is, or go and see a friend in pain or who is low and run them a bath, give them a massage and tell them you love them. I have said it before and I will say it again, we cannot change the world with one big gesture. It has to be lots of small acts. The world is complicated with lots of cogs like a clock... Everything is a chain of cause and effect and it will not happen over night.
Plant seeds, spread the word and do something everyday for the cause.
If we were all to do that, we would be amazed how many small ripples create a current.
Keep the emails coming, they are keeping me sane, happy and driven. You are all brilliant.
Be strong, be brave, and be silly.
All my love,
Alice XXX
I am writing this blog purely because my favourite time to write is either on a plane alone on on a train on alone. There is something highly alluring to me about the solitude of travel, the space to think objectively whilst in a physical transition from departure to destination. In my little artistic brain it is like a gap in time which is separate from my life, alone to think with no distractions from your life by setting or people.
Meanwhile, In the real world, time is still on going and everybody secretly thinks Alice is a nutter.
I have been inundated with emails this week from very kind 'endosisters', mothers, husbands, siblings and friends of sufferers due to my appearance on ITV's 'This Morning' and this blog.
'This Morning' was a great experience and yes, Holly Willabooby and Scoffey are fantastic. Absolutely genuine and lovely. I could not have been better looked after and in my opinion, ITV's care is superior to the BBC...
To those of you who missed it, here is a link to my interview: http://www.itv.com/thismorning/health/endometriosis-awareness-week
En route home having been 'Brighton Bound' (capitalisation is justified due to alliteration.. My blog my rules) having partook in a TEDX talk about, you guessed it, Endometriosis.
If you read my 'p' word' blog then I hope you may have watched Carol's TEDx talk 'Little Red Riding Hood' talking about Endo. A truly inspiration, universal, accessible, entertaining, enlightening and just amazing talk and woman. I am honoured that I was asked to conclude the her fantastic talk. The response to our talk today was overwhelming with some people telling us it was their favourite talk of the day!
I am quite a fan of TED talks because they are such a brilliant and accessible way to learn about new things, and not just in your area of interest, which I believe is important when trying to keep the brain ticking over and stimulated. As you may know, I suffer bouts of insomnia due to pain- I have learnt many a thing from late night TED watching. I profess it is all usually in my familiar and favourited field of ethical and political philosophy, but I have also watched talks on the stars, psychology of shopping and even some on farming.
But do not be put off by my ridiculous obsession, TED talks are lecture-like talks given by all sorts of people on any subjects in front of a live audience and are then filmed and uploaded onto their website- or if you are a real geek like me- the app. These talks can vary from professors on Middle English at Cambridge giving lectures on Chaucer's 'Canterbury Tales', to physics, to cars, to sex, to basket weaving, to hospitality, to the environment, to endometriosis. You see you can find one on anything. If I really wanted to I could probably do a TEDX talk on why every household should keep two chickens- its a bit like pitching or purposing an idea or dissertation you see. Or just an interesting story like when my brother managed to hit himself in the face with a golf ball... having hit it forward. But that is another blog for another day.
Carol spoke with passion, conviction and emotion and I came in at the end with a few dramatic sentences. Once the video is available to me I shall upload it on here.
The most important thing was after the TEDX day was finished. Afterwards we were greeted by groups of lovely girls wanting to ask lots of questions and outraged by society that they haven't heard of this disease before. They, like most of us, feel let down by society they they knew nothing of such a common disease that effects so many people with potential devastating effects if it goes undiagnosed for too long. Some girls feel inspired to make 'Endometriosis UK' their house charity which is amazing- and not just because they are raising money but because then everyone in their house and thus the school, will then hear of endometriosis. Slowly but surely the snowball is starting to roll.
Hopefully we may see a few of them at the million woman march next thursday.
Our Chair, Trevor, who is an absolute darling and we are so lucky to have such a gentleman behind us with such vision, passion and dynamicity (Its an Alice word, derived from dynamic) spoke to me of a beautiful metaphor which I shall share with you in hope:
"The cows are leaning on the fence and it is bending. It will one day break, it is not far off, and we will be grazing in lush pastures anew."
Now I come to think about it, I guess he was referring to us (and himself) as cows, which in hindsight is hilarious (cheeky man), but I like the idea of bending the fence, a fence that is preventing and holding us back, and the grass being genuinely greener on the other side. A struggle worth the reward.
We will get there. This has been the best 'Endometriosis Awareness Week' to date, and there is no such thing as going backwards.
This week has made it apparent to me just how much DEMAND there is for endometriosis to be spoken about, be it now the endless and brilliant women who have emailed me having watched 'This Morning' thanking me for sharing my story and speaking up for endo, or the girls who where so grateful to have been educated about a condition they never realised existed. Both are our 'target markets', and I am compelled to do as much as I can, meet and surpass demand if you like.
It is rather daunting because there is so much work to be done. And it is always against the tide because no one wants to talk about periods. But I know this is a worthy cause and I want to give the fourteen year old Alice hope, a role model and permission to talk to others about it and not be embarrassed or to ever be in a position where she may feel isolated by this bitch of a condition.
Thank you so much for your emails, this week has been overwhelming. Thank you for sharing your stories with me, please do not stop, I will always reply. Except for my brothers friends. You can stop emailing me, squirts.
I shall repeat on my blog to what I say to everyone who emails me, I am not doing anything special right now, you reading this can make as bigger impact as I am. You can share this blog with one other person, or donate to the 'Endometriosis UK' website, or join us in the Million Woman March, or tell your friend what endometriosis is, or go and see a friend in pain or who is low and run them a bath, give them a massage and tell them you love them. I have said it before and I will say it again, we cannot change the world with one big gesture. It has to be lots of small acts. The world is complicated with lots of cogs like a clock... Everything is a chain of cause and effect and it will not happen over night.
Plant seeds, spread the word and do something everyday for the cause.
If we were all to do that, we would be amazed how many small ripples create a current.
Keep the emails coming, they are keeping me sane, happy and driven. You are all brilliant.
Be strong, be brave, and be silly.
All my love,
Alice XXX
Monday 3 March 2014
Day 28, My One Month Anniversary
Endo 365
My day today sums up my endometriosis recovery experience durning this month: Tiring, painful but also exciting, full of love and odd in a way that only my life can be.
I woke up at a ridiculously late time for me because my body is still very tired and I have obviously been over doing it slightly. But then, no surprise there, possibly, maybe, a weekend away in Amsterdam was on the slight side of ambitious.
I had an hour of quite intense pain which was no problem as I just plugged myself into my TENs machine and reread 'Taming The Shrew' for a piece of coursework I am doing. I believe it is possible to make all time count and not be wasted.
I then had a couple of visitors which was lovely. One thing for sure, you really do find out who your friends are and what people are made of during a time of crisis or recovery. I have been a bit disappointed by people I assumed would want to ensure I was okay, but I have also been overwhelmed by love and kind intent shown by people which I never expected. Thankfully the later has been far far more common and I am so lucky. People show their true colours when you are ill and you certainly find out who your real friends are. But that is okay because you don't always like the people you trust either, like dentists.
And then an hour after this, I got a call from my lovely friend and colleague at Endometriosis UK asking me whether I am free tomorrow to go on ITV's 'This Morning' to talk about my experience of Endometriosis, raise awareness, educate and empower as many people as I can during Endometriosis Awareness week. Tune in/ record ITV1's 'This Morning' show between 10:30 and 12:30 if you'd like to see the monkey (me) perform. They guesstimate I will be on at around 11 am. I am very excited however slightly stressed about turning everything around in time, organising and articulating in my mind the objectives and points I want to make and what I would like to say. Hopefully I will be fine, and I wont do a typical Alice and wander off subject about 'all the starving children in Africa' and how 'awful it is that Tibet is still not free'... Also, keep everything crossed that I don't accidentally panic talk and say something typically outrageous and inappropriate. Grandma, I hope the prayer beads are at the ready.
Finally, the odd side to my day was panic dying of my mothers roots because they were toying with the idea of having Momma Smith on the sofa with me. Very hilarious and I have taken a picture of my art work as punishment for being so vain. Embrace the grey mummy, you are fantastic as you are; maturing like good wine into an occasionally cantankerous but mainly eccentric, brilliant beauty.
As a literary geek, I hoped the theme and metaphor of my '365' themed is evident, however belonging to a family of scientists, I feel compelled to explain just incase:
The idea is that the day of my operation was the beginning, day neutral, where my life began afresh and, in the words of my cousin and best friend, I was to be reborn. Hence the 'Day x' theme correlating to the days before and after my operation. Likewise, 365 is the amount of days in a year- this blog is meant to follow what everyday life is like for a sufferer of endometriosis, with my year starting on the 3rd of February. Its like my own little endometriosis-free New Years and Birthday.
I am now allowing myself to objectively evaluate the operation as I feel enough time has passed now where I can start to do so. I like to think it is obvious to anyone who speaks to me or reads my blogs that I am delighted by the results of my surgery so far, and as time has passed I feel no less happy with it. I am still in pain everyday, however the marina coil is still settling in and I should rationally still anticipate post-op-upsett pain. Unfortunately I continue to experiencing IBS pain, however I know the Endo did irreversible damage to that organ and the nerves in my stomach which is sad, but I must now accept that I will always suffer a degree of pain from it and get over it. I can minimise and manage the pain through diet, medication and exercise and will continue to do so. I was hoping to be back to work this week however, if I am honest I am not strong enough yet. I am still having between 10-12 hours sleep a night and will have to ease back into my 55 hour weeks bit by bit. I am so lucky to work for such kind and understanding people who are flexible around my needs!
I am far more confident now than I was before my op about how much of the daily pain it will help, or at least stabilise. I am confident I will be able to now cope with my condition whilst I am alone at university and I cannot articulate the joy it brings me to finally have that goal as my reality. I feel like such a lot of anxiety has been lifted and I feel so grateful and lucky to live in a time and place where it has been made possible for me.
I am absolutely honest with myself that I will never live a pain free life. I know this. For my family and friends that is always sad to hear, but that is my reality. What also is my reality is that I am probably happier than 80% of the people I know. And that in some strange ways is a result of how I empower myself in spite and also because of my endometriosis. Every situation, every emotion, every reaction, has an element of choice. We cannot chose the situations life leads us too, but we always always, have a choice. No matter how deep within us, there is choice in how we react in and to a situation; whether we become its victim and indulge in how bad it makes us feel, or whether we chose to take control of how we feel and move forward, it just takes time, be patient but hopeful with yourself. It is also important that you do not feel guilty if you are going through the lowest point, It takes being the victim for a period to know exactly what it feels like, which then fuels the desire to chose not to be. I certainly went through a mourning process when I was diagnosed and for various short periods since. Without the lows we wouldn't realise the highs. The important thing is that you learn to pick yourself up whether it takes 6 minutes or six months. I honestly view this to be one of, if not the, most valuable tool I have.
My thinking of this is not a science, it is a belief and it is a process. I am by no means perfect at it, it is a learning curve. I am becoming better and better at it the older I become and the more situations I face. It is even a choice to think like this. There are days where I chose to lay in bed for hours and be waited on for Lady Grey tea because sometimes that is the best I can do, or that is what I need to do. Don't always think that It is about slaying taboos and proclaiming the word 'Endometriosis' from the top of Mt. Everest, it is doing the best on the day.
My life will never be pain-free and perfect, but who's life is? 'Remember, everyone you meet has lost something, is fighting something and has had their heart broken.' I also find it helpful to remember that every person has a talent you do not possess, especially when I am on my soap box about how idiotic someone's customer service just was... e.t.c....
This month of recovery has been priceless to me. I was so ridiculously busy up until this point and slightly manic in nature, I did not think I would be able to cope not seeing a different friend every night of the week and now working 12 hour days but, amazingly, I have loved this time. I have written, read, watched TV (no daytime TV though), had time to evaluate my life and the people in it and what is important to me. I have finally had time to quieten my soul and improve and assess qualities in myself that I don't necessarily like or that have pushed friends away. Ultimately I have learnt how much I love my life, how lucky I am to be cherished for some reason by such a variety and multitude of people. Lord knows how I deserve such friendship considering how opinionated and loud I am. I hope my genuine love, appreciation and loyalty has been felt in return. I have started to redecorate my room, redo coursework from two years ago, clear out my wardrobe, and other mundane things as well.
Quite timely, this week is Endometriosis Awareness week. That means my one month anniversary, This Morning and the TEDX talk I am concluding all have a greater impact. For anyone reading this, beyond that act itself, could I please be audacious enough ask of you another favour? If everyone who read this could promote endometriosis this week, be it share this blog with one other person, or tell someone about it, or even if you just tune in tomorrow with a friend, I will be eternally grateful.
'A success does not have to be one big thing, it can also be lots of little things.'
If everyone does this, then according to my average stats, 1,500 more people per blog will know about endometriosis, and will be liberated in 17 countries world wide, and 6 continents! If you were to partake, I think that is a pretty special legacy for a monday night.
Please, if you have the time, email me your story or feedback, did the person you spoke to know about it or did many like it on Facebook? If you yourself suffer, how did you brake a taboo or tell someone? How did it feel? My email is : alice.smith@marriottfarm.co.uk
And finally, to those of you unfortunate enough to know me well: do not fear. I am finalising this blog sat on the right train to London, I am not late and en route to Aberdeen. Rationally, I know getting your head around public transport is far easier than iambic pentameter and covalent bonding but this is me. Plus I think I saw mum pack a bottle of fizz for when we arrive at our hotel. Whatever happens tomorrow, today has been a success!
Be good, be brave and most of all, be cheeky.
All my Love,
Al XXX
My day today sums up my endometriosis recovery experience durning this month: Tiring, painful but also exciting, full of love and odd in a way that only my life can be.
I woke up at a ridiculously late time for me because my body is still very tired and I have obviously been over doing it slightly. But then, no surprise there, possibly, maybe, a weekend away in Amsterdam was on the slight side of ambitious.
I had an hour of quite intense pain which was no problem as I just plugged myself into my TENs machine and reread 'Taming The Shrew' for a piece of coursework I am doing. I believe it is possible to make all time count and not be wasted.
I then had a couple of visitors which was lovely. One thing for sure, you really do find out who your friends are and what people are made of during a time of crisis or recovery. I have been a bit disappointed by people I assumed would want to ensure I was okay, but I have also been overwhelmed by love and kind intent shown by people which I never expected. Thankfully the later has been far far more common and I am so lucky. People show their true colours when you are ill and you certainly find out who your real friends are. But that is okay because you don't always like the people you trust either, like dentists.
And then an hour after this, I got a call from my lovely friend and colleague at Endometriosis UK asking me whether I am free tomorrow to go on ITV's 'This Morning' to talk about my experience of Endometriosis, raise awareness, educate and empower as many people as I can during Endometriosis Awareness week. Tune in/ record ITV1's 'This Morning' show between 10:30 and 12:30 if you'd like to see the monkey (me) perform. They guesstimate I will be on at around 11 am. I am very excited however slightly stressed about turning everything around in time, organising and articulating in my mind the objectives and points I want to make and what I would like to say. Hopefully I will be fine, and I wont do a typical Alice and wander off subject about 'all the starving children in Africa' and how 'awful it is that Tibet is still not free'... Also, keep everything crossed that I don't accidentally panic talk and say something typically outrageous and inappropriate. Grandma, I hope the prayer beads are at the ready.
Finally, the odd side to my day was panic dying of my mothers roots because they were toying with the idea of having Momma Smith on the sofa with me. Very hilarious and I have taken a picture of my art work as punishment for being so vain. Embrace the grey mummy, you are fantastic as you are; maturing like good wine into an occasionally cantankerous but mainly eccentric, brilliant beauty.
As a literary geek, I hoped the theme and metaphor of my '365' themed is evident, however belonging to a family of scientists, I feel compelled to explain just incase:
The idea is that the day of my operation was the beginning, day neutral, where my life began afresh and, in the words of my cousin and best friend, I was to be reborn. Hence the 'Day x' theme correlating to the days before and after my operation. Likewise, 365 is the amount of days in a year- this blog is meant to follow what everyday life is like for a sufferer of endometriosis, with my year starting on the 3rd of February. Its like my own little endometriosis-free New Years and Birthday.
I am now allowing myself to objectively evaluate the operation as I feel enough time has passed now where I can start to do so. I like to think it is obvious to anyone who speaks to me or reads my blogs that I am delighted by the results of my surgery so far, and as time has passed I feel no less happy with it. I am still in pain everyday, however the marina coil is still settling in and I should rationally still anticipate post-op-upsett pain. Unfortunately I continue to experiencing IBS pain, however I know the Endo did irreversible damage to that organ and the nerves in my stomach which is sad, but I must now accept that I will always suffer a degree of pain from it and get over it. I can minimise and manage the pain through diet, medication and exercise and will continue to do so. I was hoping to be back to work this week however, if I am honest I am not strong enough yet. I am still having between 10-12 hours sleep a night and will have to ease back into my 55 hour weeks bit by bit. I am so lucky to work for such kind and understanding people who are flexible around my needs!
I am far more confident now than I was before my op about how much of the daily pain it will help, or at least stabilise. I am confident I will be able to now cope with my condition whilst I am alone at university and I cannot articulate the joy it brings me to finally have that goal as my reality. I feel like such a lot of anxiety has been lifted and I feel so grateful and lucky to live in a time and place where it has been made possible for me.
I am absolutely honest with myself that I will never live a pain free life. I know this. For my family and friends that is always sad to hear, but that is my reality. What also is my reality is that I am probably happier than 80% of the people I know. And that in some strange ways is a result of how I empower myself in spite and also because of my endometriosis. Every situation, every emotion, every reaction, has an element of choice. We cannot chose the situations life leads us too, but we always always, have a choice. No matter how deep within us, there is choice in how we react in and to a situation; whether we become its victim and indulge in how bad it makes us feel, or whether we chose to take control of how we feel and move forward, it just takes time, be patient but hopeful with yourself. It is also important that you do not feel guilty if you are going through the lowest point, It takes being the victim for a period to know exactly what it feels like, which then fuels the desire to chose not to be. I certainly went through a mourning process when I was diagnosed and for various short periods since. Without the lows we wouldn't realise the highs. The important thing is that you learn to pick yourself up whether it takes 6 minutes or six months. I honestly view this to be one of, if not the, most valuable tool I have.
My thinking of this is not a science, it is a belief and it is a process. I am by no means perfect at it, it is a learning curve. I am becoming better and better at it the older I become and the more situations I face. It is even a choice to think like this. There are days where I chose to lay in bed for hours and be waited on for Lady Grey tea because sometimes that is the best I can do, or that is what I need to do. Don't always think that It is about slaying taboos and proclaiming the word 'Endometriosis' from the top of Mt. Everest, it is doing the best on the day.
My life will never be pain-free and perfect, but who's life is? 'Remember, everyone you meet has lost something, is fighting something and has had their heart broken.' I also find it helpful to remember that every person has a talent you do not possess, especially when I am on my soap box about how idiotic someone's customer service just was... e.t.c....
This month of recovery has been priceless to me. I was so ridiculously busy up until this point and slightly manic in nature, I did not think I would be able to cope not seeing a different friend every night of the week and now working 12 hour days but, amazingly, I have loved this time. I have written, read, watched TV (no daytime TV though), had time to evaluate my life and the people in it and what is important to me. I have finally had time to quieten my soul and improve and assess qualities in myself that I don't necessarily like or that have pushed friends away. Ultimately I have learnt how much I love my life, how lucky I am to be cherished for some reason by such a variety and multitude of people. Lord knows how I deserve such friendship considering how opinionated and loud I am. I hope my genuine love, appreciation and loyalty has been felt in return. I have started to redecorate my room, redo coursework from two years ago, clear out my wardrobe, and other mundane things as well.
Quite timely, this week is Endometriosis Awareness week. That means my one month anniversary, This Morning and the TEDX talk I am concluding all have a greater impact. For anyone reading this, beyond that act itself, could I please be audacious enough ask of you another favour? If everyone who read this could promote endometriosis this week, be it share this blog with one other person, or tell someone about it, or even if you just tune in tomorrow with a friend, I will be eternally grateful.
'A success does not have to be one big thing, it can also be lots of little things.'
If everyone does this, then according to my average stats, 1,500 more people per blog will know about endometriosis, and will be liberated in 17 countries world wide, and 6 continents! If you were to partake, I think that is a pretty special legacy for a monday night.
Please, if you have the time, email me your story or feedback, did the person you spoke to know about it or did many like it on Facebook? If you yourself suffer, how did you brake a taboo or tell someone? How did it feel? My email is : alice.smith@marriottfarm.co.uk
And finally, to those of you unfortunate enough to know me well: do not fear. I am finalising this blog sat on the right train to London, I am not late and en route to Aberdeen. Rationally, I know getting your head around public transport is far easier than iambic pentameter and covalent bonding but this is me. Plus I think I saw mum pack a bottle of fizz for when we arrive at our hotel. Whatever happens tomorrow, today has been a success!
Be good, be brave and most of all, be cheeky.
All my Love,
Al XXX
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