Endo 365
'Carpe Diem'
I am going to tell you something now that you may hate me for; I am currently sat on my balcony facing the sunrise in Tenerife. As a gesture of goodwill I kept that fact secret, but I think it is important you now know the setting in which I am writing. This blog is dedicated to my friends and family- to explain why I am always late, at the wrong address, triple booked and the rest, and celebrate the patience you show your scatty-fruit-cake-of-a-friend.
I am that friend who is impossible to tie down because she is running five jobs, three volunteering projects and completing her A Levels simultaneously- and thats not to mention socialising five nights a week! I do this, not because I am crazy, but because my pain this last year has been relatively, blissful. GnRH and the FOBMAPs diet have gifted me the invaluable pleasure of a 'normal life'- Minus of course, the pain attack on the plane back from India where we almost had to do an emergency landing in Iran for more morphine- now wouldn't that have made for a good read?
A lot of people ask me dumbfounded why I over stretch and over commit myself to the unnecessary extent that I do. It is hard to answer because it is so complicated and with very little rational behind it. I think unless you have lived for a period where you are in too much pain and too tired to get out of bed, and then you are able to get away with five hours sleep, and are able to work in the day teaching and hostess at night, and you are able to do a good deed and you are still able to go dancing with you friends, then you do it. In fact, you lavish that opportunity, you cling onto it with hope and excitement and like a new toy; you exploit every mode and game possible.
I realise that life is too short and that in 3 days time my health will dramatically change, hopefully for the better and I can continue as I am, not having to worry about when I will next be forced to stop. However endometriosis has a habit of giving you the exact opposite of what you want. I want to experience and discover everything and give myself every chance to live a full, bright and happy life. I never know when my next pain attack will come, I could be bed ridden tomorrow, so I cease today instead.
I have had the most wonderful week away with my amazing grandparents and their fun loving Irish friend George; who was like my adopted grandfather this week- lucky grandma! Two men to chose from. Even though all of them are in their early seventies (and don't let them tell you otherwise) we have still been Segwaying THREE times, out drinking EVERY night (apologies to my liver) and laughed to the point of tears every day. Though I have teased them about being 'shrives', I think they like me, are aware of how precious life is and the need to make the most of every 'unforgiving minute'. What they taught me this week is that making the most of it doesn't mean driving 150 miles in one day to see all you friends before you go on holiday. The simple things can sometimes be the biggest gestures. So when I am recovering from my op, I will be making the most of the time. Instead of working and gaining skills and doing the things I formally saw as productive, I will be doing things I have come to appreciate as productive in a different way. I will be reading, educating myself, perhaps I'll start a course on basket weaving. Perhaps I won't. I will have the luxury of choice and time. I will be mentally stronger for thinking of these small victories as something productive, and not something stopping me from ruling my empire. Because actually, who can tell me that selling advertising space is more productive than reading? Nobody, so why think that way?
Again, I find myself empowering myself against my Endo, it is not putting my life on pause for a couple of months, but giving me the time to learn a new language if I wish. We ladies, have the choice to be miserable or 'seek opportunity in ever adversity.'
The reason why I teased you all about being in the sunshine, is because the 'elders and betters' kindly dictated I needed a week away before my op to relax, sleep, eat and prepare myself for the week ahead and take me away from all my responsibilities at home. And as usual, those I aspire to and learn from were right. It has forced me to relax because I cant rush round seeing everyone and working double shifts. I have had time to write and read and mentally prepare. I feel like I should be a character in 'Eat, Pray, Love', or american, I am aware of how nauseatingly positive I sound, and the Brit in my apologises.
It is hard to articulate the effects that bad health has on an individual unless they have experienced it themselves. Poor health gives an unquantifiable, intangible clarity and urgency to life. I know I am not suffering cancer (thank be to god) however endometriosis is life debilitating and there is a big campaign in America right now calling it 'Cancer-like'. It is because I have spent time in hospital with two year olds that may not be here today, who would be LUCKY to make it to my age, that I furnish my life with people and love and challenges and experience giving me skills and fulfilment. I know the value of living.
For me, its not a case of having no time to 'smell the roses'. Indeed, I smell the roses, the carnations, the lilies, the freesias, the tulips, the daffodils, the bluebells and the occasional cactus.
My challenge to any sufferer reading, or anyone really: Do not begrudge any time, even if you are in pain and reading, or watching TV, or sat on a train- those seconds are no shorter than the seconds during a crucial meeting or enjoying a friends company. It is okay to be watching TV, life is all about finding the balance. Sometimes you need down time as fuel. If you begrudge it, which is so very easy to do because it is SO frustrating, you are letting your endometriosis win twice. During my recovery I intend to have perfectly manicured toes and finger nails because I never have the time to do that normally. During my recovery I intend to watch every 'Breaking Bad' episode. During my recovery I want to learn more about Hindu and Greek Gods. I may not be causing a ripple in my world, but I use the time for productivity of a different kind. And that is okay.
This poem follows all of my personal philosophies about living life as '60 seconds worth of a distance run'. Thank you to everyone reading this blog, sorry to all my friends and family if I have ever been late or double booked you bare with me, I'm simply cramping a suitcase full of clothes into a handbag.
I'd love some feedback, or if you like to share your experiences/ become a pen pal or whatever, just drop me an email alice.smith@marriottfarm.co.uk
I am on BBC radio Leicester tomorrow, the 1st of February talking about my Blog and the Million Women March
'If' By Rudyard Kipling
If you can keep your head
when all about you men are losing theirs
and blaming it on you,
If you can trust yourself when all men doubt you
but make allowances for their doubting, too.
If you can wait but not be tired of waiting,
or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
and yet don't look too good nor talk too wise,
If you can dream but not make dreams your master,
If you can think and not make thoughts your aim,
If you can meet with triumph and disaster,
and treat those two imposters just the same,
If you can bear to hear the truth you've spoken
twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
and stoop and build them up with worn-out tools,
If you can make one heap of all your winnings
and risk it on one turn of pitch and toss,
and lose and start again at your beginnings
and never breathe a word about your loss,
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
and to hold on when there is nothing in you
but the will that says to them "hold on,"
If you can talk with crowds and keep your virtue,
or walk with kings nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you but none too much,
If you can fill the unforgiving minute
with 60 seconds worth of distance run,
Yours is the Earth and everything that's in it,
and which is more, you'll be a man, my son.
All my love,
Al XX
Friday 31 January 2014
Tuesday 28 January 2014
-6 Days
Endo 365
I woke up early this morning to do a bit of bare foot soul searching. Firstly I walked along the beach whilst the world and sun were still sleeping, and then watched the sun arise from it's slumber. It was so intimate and I feel happy, relaxed and at peace. Both of these things are free and establish a realisation that this world is a beautiful place and life is good. My grandparents are listening to me reading this and think I have gone mad and will run off as a hippie. Not yet.
If you're having a bad day, even if you are bed ridden, google 'Earth Pics.' Now I realise this is no substitute to morphine but it give hope. Some days hope is enough.
My thought of the day:
I have been fairly pessimistic about the results of my operation, however I affirmed with myself this: whatever the outcome, it is out of my control. There will be no choice in the success or failure of my operation, I will have to live it and make the best out of it, because that will be my reality. The choice will come in how I react. It's tough not to quote Willy Russell: 'my choice, I'll chose.' I do love 'Educating Rita'.
It is what it is. But that's not to say what it will be.
I woke up early this morning to do a bit of bare foot soul searching. Firstly I walked along the beach whilst the world and sun were still sleeping, and then watched the sun arise from it's slumber. It was so intimate and I feel happy, relaxed and at peace. Both of these things are free and establish a realisation that this world is a beautiful place and life is good. My grandparents are listening to me reading this and think I have gone mad and will run off as a hippie. Not yet.
If you're having a bad day, even if you are bed ridden, google 'Earth Pics.' Now I realise this is no substitute to morphine but it give hope. Some days hope is enough.
My thought of the day:
I have been fairly pessimistic about the results of my operation, however I affirmed with myself this: whatever the outcome, it is out of my control. There will be no choice in the success or failure of my operation, I will have to live it and make the best out of it, because that will be my reality. The choice will come in how I react. It's tough not to quote Willy Russell: 'my choice, I'll chose.' I do love 'Educating Rita'.
It is what it is. But that's not to say what it will be.
-7 Days
365 Endo
Important: THE GENESIS OF THIS BLOG IS NOT A NEGATIVE ONE. If you would want to read submissive, depressive things about how awful endometriosis is then please make a U turn because although I suffer from endometriosis, I certainly am not its Victim.
This blog is going to track the operation excising my endometriosis. My metamorphosis from a suffering caterpillar, to a butterfly with a beautiful, peaceful tummy.
When diagnosed at 14, I had never heard of 'Endometriosis'. So I did what all 21st century kids do; I googled it. The worst thing I could have done. Within minutes I was sure I was infertile and my life was no longer worth living. I hope that this blog is going to be the opposite of that, even if I can only empower one woman, it is worth every second spent writing.
Incase you are just reading this out of kindness or pitty (just keep the numbers coming baby) and you are not aware of what Endometriosis is; Endometriosis is when the tissue lining the womb which sheds blood during your menstral cycle grows outside of your uterus. This causes internal bleeding which can hypersensitise your nervous system, cause scar tissue, stick your organs together, cause painful sex, infultrait organs as a 'benign cancer', IBS, and lots of other nasty, painful stuff.
Endometriosis effects 1 in 10 women, the same amount as diabetes and breast cancer yet it is vertually unknown.
It is the biggest cause of infertility and we need a voice.
Now that that is sorted, My introduction, please...
My name is Alice Smith, I am 18 years old (My birthday is the 21st of June if you would like to do presents) and I suffer from Endometriosis. I am the 'Young Advocate' for 'Endometriosis UK' a member of the Trustee Board and I also partook in the BBC 'Young Apprentice' in 2012. It hard not to add 'and I'm an alcoholic' to the end of that introduction- even if endometriosis is enough to make you want to drink! The reason in my writing today is that it is exactly a week until I have my surgery with Mr Andrew Kent in Surrey- an operation I have been waiting for for four years (lots of 4's). It is worth mentioning that I am dyslexic, so there may be the occasional typo and made up word... enjoy...
My first memory of what can only have been gynocological pain was in 2008, aged 12 and in a tent, sleeping over in my friends garden. This was a year previous to starting my period, so as far as I knew there was no reason for the pain, and it was so shocking and immense I had to go home. This crippling pain visited me every month for a year before I eventually started my menstral cycle. With every period it got worse, until after six months I was rushed into A&E for IV Morphine pain relief, having gone into a 'False Labor' pain attack. The pain grew to a point where I experienced it every day of the month and was rushed into A&E twice monthly; once when on my period and once when ovulating. At fourteen my quality of life was non-existent, I could no longer go to school because of the pain and chronic fatigue and I was either in hospital or recovering from the morphine, by which time it was time to check back in again. Due to the pain and dramatic loss of blood I underwent a laparoscopy where I was diagnosed with Endometriosis at 14. Since then I have been on GNrH for four years to complete my education and to date, false menopause is the only thing that has worked.
Perhaps the reason I am not a victim to my endometriosis is because I have grown with my endometriosis: I have never known adult life without it. Any mature or independent decisions I have made, have been with my endometriosis in mind.
Ultimately; although at times it has been isolating, debilitating and restricting having endometriosis from an 'unusually' young age, I have spent time with toddlers in hospital who wont be able to even do half the things I have am able to do with my endometriosis, and that is I view myself as lucky.
This outlook ensures I appreciate all aspects of my life, allowing myself to see the potential for good in my endometriosis, and for that reason alone I am winning.
I know my endometriosis grounds me, which in turn makes me a better, more compassionate person living a bigger, fuller life. I know I wake up in pain most nights but whether I like it or not, my endometriosis inadvertably shapes my life and who I am. I have nothing to lose by empowering myself to take control, never letting it win and moulding me into better person. "Every adversity, every failure, every heart ache carries with it the seed of an equal or greater benefit." Napoleon Hill
Everyday I dare myself to challenge my endometriosis, be it informing someone about what it is who previously hadn't realised it existed, empowering a fellow sufferer or (my favourite) breaking a taboo. Eventually if enough of us tap the wall it has got to tumble- and it doesn't matter whether it is for us or for our grandchildren- we cannot suffer in silence forever.
In seven days time I should be out of surgery. I am slightly scared about what they may find, I am slightly scared that the NHS will cancel last minute, and I am slightly scared of the unknown afterwards. But none of it really matters because my life will start in seven days time.
Important: THE GENESIS OF THIS BLOG IS NOT A NEGATIVE ONE. If you would want to read submissive, depressive things about how awful endometriosis is then please make a U turn because although I suffer from endometriosis, I certainly am not its Victim.
This blog is going to track the operation excising my endometriosis. My metamorphosis from a suffering caterpillar, to a butterfly with a beautiful, peaceful tummy.
When diagnosed at 14, I had never heard of 'Endometriosis'. So I did what all 21st century kids do; I googled it. The worst thing I could have done. Within minutes I was sure I was infertile and my life was no longer worth living. I hope that this blog is going to be the opposite of that, even if I can only empower one woman, it is worth every second spent writing.
Incase you are just reading this out of kindness or pitty (just keep the numbers coming baby) and you are not aware of what Endometriosis is; Endometriosis is when the tissue lining the womb which sheds blood during your menstral cycle grows outside of your uterus. This causes internal bleeding which can hypersensitise your nervous system, cause scar tissue, stick your organs together, cause painful sex, infultrait organs as a 'benign cancer', IBS, and lots of other nasty, painful stuff.
Endometriosis effects 1 in 10 women, the same amount as diabetes and breast cancer yet it is vertually unknown.
It is the biggest cause of infertility and we need a voice.
Now that that is sorted, My introduction, please...
My name is Alice Smith, I am 18 years old (My birthday is the 21st of June if you would like to do presents) and I suffer from Endometriosis. I am the 'Young Advocate' for 'Endometriosis UK' a member of the Trustee Board and I also partook in the BBC 'Young Apprentice' in 2012. It hard not to add 'and I'm an alcoholic' to the end of that introduction- even if endometriosis is enough to make you want to drink! The reason in my writing today is that it is exactly a week until I have my surgery with Mr Andrew Kent in Surrey- an operation I have been waiting for for four years (lots of 4's). It is worth mentioning that I am dyslexic, so there may be the occasional typo and made up word... enjoy...
My first memory of what can only have been gynocological pain was in 2008, aged 12 and in a tent, sleeping over in my friends garden. This was a year previous to starting my period, so as far as I knew there was no reason for the pain, and it was so shocking and immense I had to go home. This crippling pain visited me every month for a year before I eventually started my menstral cycle. With every period it got worse, until after six months I was rushed into A&E for IV Morphine pain relief, having gone into a 'False Labor' pain attack. The pain grew to a point where I experienced it every day of the month and was rushed into A&E twice monthly; once when on my period and once when ovulating. At fourteen my quality of life was non-existent, I could no longer go to school because of the pain and chronic fatigue and I was either in hospital or recovering from the morphine, by which time it was time to check back in again. Due to the pain and dramatic loss of blood I underwent a laparoscopy where I was diagnosed with Endometriosis at 14. Since then I have been on GNrH for four years to complete my education and to date, false menopause is the only thing that has worked.
Perhaps the reason I am not a victim to my endometriosis is because I have grown with my endometriosis: I have never known adult life without it. Any mature or independent decisions I have made, have been with my endometriosis in mind.
Ultimately; although at times it has been isolating, debilitating and restricting having endometriosis from an 'unusually' young age, I have spent time with toddlers in hospital who wont be able to even do half the things I have am able to do with my endometriosis, and that is I view myself as lucky.
This outlook ensures I appreciate all aspects of my life, allowing myself to see the potential for good in my endometriosis, and for that reason alone I am winning.
I know my endometriosis grounds me, which in turn makes me a better, more compassionate person living a bigger, fuller life. I know I wake up in pain most nights but whether I like it or not, my endometriosis inadvertably shapes my life and who I am. I have nothing to lose by empowering myself to take control, never letting it win and moulding me into better person. "Every adversity, every failure, every heart ache carries with it the seed of an equal or greater benefit." Napoleon Hill
Everyday I dare myself to challenge my endometriosis, be it informing someone about what it is who previously hadn't realised it existed, empowering a fellow sufferer or (my favourite) breaking a taboo. Eventually if enough of us tap the wall it has got to tumble- and it doesn't matter whether it is for us or for our grandchildren- we cannot suffer in silence forever.
In seven days time I should be out of surgery. I am slightly scared about what they may find, I am slightly scared that the NHS will cancel last minute, and I am slightly scared of the unknown afterwards. But none of it really matters because my life will start in seven days time.
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