Endo 365
A couple of months ago a received a bit of an odd email which if I am honest put me off sharing my blog a little bit, hence why it has been neglected recently. However I have had some very lovely ladies email me to make sure I'm still alive and functioning so this is for you; thank you. I guess in response to the email at the time I wrote this blog and I am going to restart my blog by sharing it with you, its about time I set a few things straight and let you into some secrets.
I am a Cheery Picker; a sales person. I focus on the best things or the most
relevant and put a positive spin on it all. It is in my nature, I am a
survivor and what you read in this blog is an important, but such a small percentage of what composes me.
I choose in my blog to put the most positive and the relevant things that I
wish to share on the internet for everyone to read, always bearing in mind
that future employers or my grandparents may read it. And that transfers
into my everyday life also. I am aware and very grateful for how good my life is, however there is far more challenges and heart breaks than I allow to be seen in this blog because its not all my stuff to tell, so never assume someone is 'okay' because you only know as much as they are prepared to share- Okay? Lecture over children. Momma loves you. Now go play.
Quite often when I explain to people about my Endo they are genuinely
shocked, as far as they can see there is nothing physically wrong with me, I walk
around full of energy, confidence and idiocy. Because that is me and that is the
impression I want people to have of me. But pending on the situation and
company, I reveal as much or as little as I want to. And I remember the facts
that are important for people to be aware of, and I keep close to me values I do not wish to share either because it is not my place or simply it is unnecissary to do so.
Bear with me, there is a point to this.
You are 80% in control of the impression you give to others. So make it the
best impression. And this applies to yourself and your internal monologue.
If you make simple changes, cherry pick the best things to concentrate on
and think about, change your basic language from neutral like 'how are you?' 'okay' to something positive like 'fantastic'. You begin to cherry pick without realising and thus changing your mindset.
There is far more to my life than will ever be displayed on this blog
because it is irrelevant. My life has been blessed but it has never been
easy, that is why I have conscientiously built my positive and empowering
frame of mind. It is quite simply a survival instinct. You have a choice in life: you either surrender to the chaos, becoming victim to it, or you cherry pick, take control and through strength
of character and will to have a better life (which I believe is in everyone's nature), you are the winner long term. Pre-drug scandal, LanceArmstrong was my hero because of this very reason. His personal philosophies (inspired by Irranaus), revolved around the thinking that evil exists to make you a better, stronger, more driven, kinder, more appreciative and rounded person. And I believe this to be true. Even if he turned out to be a charasmatic lying barstool.
Life if hard enough, things happen in everyone's life that devastate them, but the devistation is relative to their experiences. We never know what will happen in the near or distant future so make the best of the here and the now. It is true that if we were to chuck all of our problems into a pile we would soon take our own back. Because we know that even with those worries and strife's, the world continues to turn and there remains 24 hours in a day. We are still surviving and living and laughing and crying even if we lay worried at night- the point is we survive and supass the daily worries because we just do... And the truth is, no matter how heart
shatteringly awful something is, it will not change those facts. The world will continue to spin, we will continue to respire, and there will remain 24 hours in the day.
We have one life, most of which is out of our control. So the things you do have
control over; grab by the flipping neck and give yourself the best possible
chance because nothing and nobody else will.
Cherry Pick.
Focus on the good- I was speaking to a very interesting lady on my globe trotting this summer and she believed that the main cause for depression is because as humans we tend to focus on the negatives; what hurts in our body, whats going wrong in our career, what is going wrong in certain relationships and friendships. I challenge you to instead focus of what feels good in your body, what is going right with your career, the good relationships you have and beyond preparing yourself, do not give the negative any of your time because it is not worth an ounce of your precious time.
Without cringing, up sell, put the best spin on your life that you can. I am not telling you to bullshit people and fake who you are, just change your mindself and trick yourself into thinking about your life in the best possible light possible.
I am nearing the end of my Freshers week at university... I shall let you all know how I am setteling in properly another time. It is fantastic and I am very good,
All my love,
Al XXX
Friday, 19 September 2014
Monday, 7 July 2014
Day 154, IBS...
Endo 365
Ima let you into a little secret here... Sometimes I get very embarrassed about my blog- scared that it will be perceived as self-indulgent (defiantly some truth there), obnoxious, and using cliché's like a crutch. So to bring me down a peg or six, here is a blog that I never thought I would write. That's right, even this is a taboo to old twatfaceal.
IBS. Warning: This blog is to be taken with a pinch of salt... And possibly a Gin and Tonic.
It ain't mainstream sexy. In fact, it is not any stream sexy except maybe
sewer. But at war against all things taboo, here goes.
When I was first diagnosed with endo, I had no IBS symptoms, this continued for three years until I was take off GNrH for the first time. My endo was 'let loose' to see what would happen (it resulted in my school bus diverting off to hospital, and on another occasion an ambulance to school whilst I bullied the receptionist into screaming the C-BOMB with me at the top of our (my) morphine relaxed lungs (this must have been post Vagina Monologues) beside some poor souls were sitting their A Level Physiscs exam). Whilst all these frivolities kept us entertained, something godawful ransackled the shrinking violet that was my bowel. Tadar.
My IBS is as a secondary condition from my endo (Why thank you, you just keep giving). I can't help it
but there is something almost more embarrising about IBS because at least
Endometriosis sounds cool. When I am around people's house trying to
politely decline a cheese and onion pastie because I will implode, even I,
the girl born without shame, feel slightly awkward.
After I continued to get pain post re-shutting down my ovaries, my
gynaecologist referred me to the Rectoenterologists (that's their official
title) or as my brother calls them, The Party Poopers, and slightly less
eloquent; Shit Police. Although I don't know what he is laughing at; the
stench he releases they'll be after him before he can say 'ShitTheBed.'
Now IBS stands for Irritable Bowel Syndrome. It is suspected that 50% of the
population have it, although I think most people have or will experience it
at some point during their lives. Around 40% of women with endo also suffer
with IBS although my gynaecologist, and I am inclined to agree with him on
this one, believed it was more like 90%- the symptoms are simply
misdiagnosed as contributory endo symptoms. IBS is so common but we do not
realise it because, guess what, we do not talk about it. I mean, does a
curry really agree with anyone? Nervous poo? Post Alcohol blow out? All
common phrases and without realising all IBS related.
Why do we get so uptight about poo? I mean the queen does it for crying out loud.
And IBS is not really a 'thing'. It is an umbrella term essentially saying 'well we have ruled out everything else that you do not have so we're just going to give
it the blanket term of err. umm. irritable bowel .syndrome." The 'syndrome' validates it as medical you see.
So anyway, I visited the shit police and had various scans to check
everything was okay- which is was. Apart from (ironically) I have an itty
bitty cute uterus- who would think something so evil could be 'little' and
'cute'. I had all the allergy tests to rule out any intolerances causing
the pain.
And then it happened.
I had a colonoscopy.
I will never forget that day.
Having a camera up where things should only ever go down is
interesting to say the least. But at least I can die having seen the inside
of my gut... Oh wait- what? That's not on your bucket list?!
As suspected, having found no good reason, the Shit Police diagnosed me
with IBS. But it isn't all bad- as it looks like I'm going to have my
En-Suite paid for at uni.
Although I do not have any Endometriosis on or in my bowel, I had it on my
Pouch Of Douglass which are the ligaments holding your stomach together.
That coupled with my hypersensitive and messed up nervous system (good one
endo) has given me IBS. No surprise, with my IBS, I get a lot of pain and
for about a two years my bowel was utterly inconsistence (like person like..
bowel?) It isnt much better now however diet and exercise have a huge influence.
IBS is like endometriosis in that they do not no the cause and it is unlikely
they will ever cure it. You have to find your own balance.
I was then refereed to a dietician where we discovered the Endo diet I had been
following for the past year has probably put me in more pain; because
although I was not eating any wheat or lactose, I was eating loads of onion
based products with lots of veg that is all awful for your bowel,
apparently.
The FODMAP's diet was daunting at first as there is (no joke) over 100
things you cannot eat. However I preferred it to the endo diet as I can now
have lactose free dairy products opposed to nasty rice milk and co, and I no
longer had to force feed myself superfoods like broccoli.
I am lucky in that my momma was a super clever food technologist, so between
us foodies we engineered a cookbook of Alice-Friendly dishes and bakes and I
honestly have the best diet. I still have lots of salads, just with fruit
and veg that doesn't irritate me and cause me pain. If this is something you
think you may suffer from, here is a link to find out more- http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ it is just so worth informing yourself about. I am not going to pretend it is not hard work, as it is a lot of effort. But it is also worth it.
Having gone on the FODMAPS diet, I gained so so much energy. It has been one
of the highest-positive-impact things I have done and I shall be on this
diet for all of my life because it doesn't matter whether my endo packs its
bags and leaves me, this IBS is for life. But it is okay, because between this
diet, exercising, occasionally taking fibogel to regulate me, rest and
elevating myself from as many situations where I am stressed or anxious as possible, I have got this condition pretty under control. But it takes discipline and time, both
of which I am willing to surrender to as I believe the outcome is greater
than the input.
Oh and another key is when I need to fart, I do it because it relieves the
pain. And if I need to open my bowels, I do for the same reasons. I am not
saying fart in someone's face nor go in the street, but be kind to yourself
and sod the embarrassment of only going in your own home behind closed
doors.
Plus my oldest friend and I found out a fantastic game at school; like knock-a-door-run,
expect it's called fart-and-pin-it-on-someone-else. Hours of endless entertainment.
My best friend (who you will shortly be graced with a blog from) looks at me as soon as she realises, and inbetween giggeling, tells me that I'm a motherplucker and she would beat me up if she didn't know it relieves pain.
It is not easy, it is a horrible subject to ever broach with new friends
and fancies- I have found it is best to get them drunk or drug them first. I joke I joke, I kid I kid...
One of my best friend has IBS and it was something she used to be really
embarrassed about. I guess between us we have made each other feel
comfortable, confident and normal about it and she particularly has our
friendship group in stitches about her faux pas (she is much funnier than I am).
It is not embarrassing in our close friendships, we have stories that make people laugh with us, even if it does give us both a lot of pain and mean we miss days of work and feel
crap. I am so proud of how she has become to own it and not be ashamed, and
we have found that if you are not embarrassed, then no one else is really.
Also, if I am in pain, I am able to say. IBS is never taken seriously for
the pain it can cause, yet some people end up in hospital with trapped wind
and the like.
Do not underestimate or undermine IBS- It is not a killer but I debilitates and literally irritates so give it the baby wipe of respect it deserves.
If you think you may have IBS, push to be refereed just to make sure it is
nothing else, and if it is then if there is anything they can do for you.
And if you do have it, try not to be so embarrassed and ensure you are dealing with
it best you can.
All my love,
And avoid coffee,
Your Smelly Monkey,
XXXX
Ima let you into a little secret here... Sometimes I get very embarrassed about my blog- scared that it will be perceived as self-indulgent (defiantly some truth there), obnoxious, and using cliché's like a crutch. So to bring me down a peg or six, here is a blog that I never thought I would write. That's right, even this is a taboo to old twatfaceal.
IBS. Warning: This blog is to be taken with a pinch of salt... And possibly a Gin and Tonic.
It ain't mainstream sexy. In fact, it is not any stream sexy except maybe
sewer. But at war against all things taboo, here goes.
When I was first diagnosed with endo, I had no IBS symptoms, this continued for three years until I was take off GNrH for the first time. My endo was 'let loose' to see what would happen (it resulted in my school bus diverting off to hospital, and on another occasion an ambulance to school whilst I bullied the receptionist into screaming the C-BOMB with me at the top of our (my) morphine relaxed lungs (this must have been post Vagina Monologues) beside some poor souls were sitting their A Level Physiscs exam). Whilst all these frivolities kept us entertained, something godawful ransackled the shrinking violet that was my bowel. Tadar.
My IBS is as a secondary condition from my endo (Why thank you, you just keep giving). I can't help it
but there is something almost more embarrising about IBS because at least
Endometriosis sounds cool. When I am around people's house trying to
politely decline a cheese and onion pastie because I will implode, even I,
the girl born without shame, feel slightly awkward.
After I continued to get pain post re-shutting down my ovaries, my
gynaecologist referred me to the Rectoenterologists (that's their official
title) or as my brother calls them, The Party Poopers, and slightly less
eloquent; Shit Police. Although I don't know what he is laughing at; the
stench he releases they'll be after him before he can say 'ShitTheBed.'
Now IBS stands for Irritable Bowel Syndrome. It is suspected that 50% of the
population have it, although I think most people have or will experience it
at some point during their lives. Around 40% of women with endo also suffer
with IBS although my gynaecologist, and I am inclined to agree with him on
this one, believed it was more like 90%- the symptoms are simply
misdiagnosed as contributory endo symptoms. IBS is so common but we do not
realise it because, guess what, we do not talk about it. I mean, does a
curry really agree with anyone? Nervous poo? Post Alcohol blow out? All
common phrases and without realising all IBS related.
Why do we get so uptight about poo? I mean the queen does it for crying out loud.
And IBS is not really a 'thing'. It is an umbrella term essentially saying 'well we have ruled out everything else that you do not have so we're just going to give
it the blanket term of err. umm. irritable bowel .syndrome." The 'syndrome' validates it as medical you see.
So anyway, I visited the shit police and had various scans to check
everything was okay- which is was. Apart from (ironically) I have an itty
bitty cute uterus- who would think something so evil could be 'little' and
'cute'. I had all the allergy tests to rule out any intolerances causing
the pain.
And then it happened.
I had a colonoscopy.
I will never forget that day.
Having a camera up where things should only ever go down is
interesting to say the least. But at least I can die having seen the inside
of my gut... Oh wait- what? That's not on your bucket list?!
As suspected, having found no good reason, the Shit Police diagnosed me
with IBS. But it isn't all bad- as it looks like I'm going to have my
En-Suite paid for at uni.
Although I do not have any Endometriosis on or in my bowel, I had it on my
Pouch Of Douglass which are the ligaments holding your stomach together.
That coupled with my hypersensitive and messed up nervous system (good one
endo) has given me IBS. No surprise, with my IBS, I get a lot of pain and
for about a two years my bowel was utterly inconsistence (like person like..
bowel?) It isnt much better now however diet and exercise have a huge influence.
IBS is like endometriosis in that they do not no the cause and it is unlikely
they will ever cure it. You have to find your own balance.
I was then refereed to a dietician where we discovered the Endo diet I had been
following for the past year has probably put me in more pain; because
although I was not eating any wheat or lactose, I was eating loads of onion
based products with lots of veg that is all awful for your bowel,
apparently.
The FODMAP's diet was daunting at first as there is (no joke) over 100
things you cannot eat. However I preferred it to the endo diet as I can now
have lactose free dairy products opposed to nasty rice milk and co, and I no
longer had to force feed myself superfoods like broccoli.
I am lucky in that my momma was a super clever food technologist, so between
us foodies we engineered a cookbook of Alice-Friendly dishes and bakes and I
honestly have the best diet. I still have lots of salads, just with fruit
and veg that doesn't irritate me and cause me pain. If this is something you
think you may suffer from, here is a link to find out more- http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ it is just so worth informing yourself about. I am not going to pretend it is not hard work, as it is a lot of effort. But it is also worth it.
Having gone on the FODMAPS diet, I gained so so much energy. It has been one
of the highest-positive-impact things I have done and I shall be on this
diet for all of my life because it doesn't matter whether my endo packs its
bags and leaves me, this IBS is for life. But it is okay, because between this
diet, exercising, occasionally taking fibogel to regulate me, rest and
elevating myself from as many situations where I am stressed or anxious as possible, I have got this condition pretty under control. But it takes discipline and time, both
of which I am willing to surrender to as I believe the outcome is greater
than the input.
Oh and another key is when I need to fart, I do it because it relieves the
pain. And if I need to open my bowels, I do for the same reasons. I am not
saying fart in someone's face nor go in the street, but be kind to yourself
and sod the embarrassment of only going in your own home behind closed
doors.
Plus my oldest friend and I found out a fantastic game at school; like knock-a-door-run,
expect it's called fart-and-pin-it-on-someone-else. Hours of endless entertainment.
My best friend (who you will shortly be graced with a blog from) looks at me as soon as she realises, and inbetween giggeling, tells me that I'm a motherplucker and she would beat me up if she didn't know it relieves pain.
It is not easy, it is a horrible subject to ever broach with new friends
and fancies- I have found it is best to get them drunk or drug them first. I joke I joke, I kid I kid...
One of my best friend has IBS and it was something she used to be really
embarrassed about. I guess between us we have made each other feel
comfortable, confident and normal about it and she particularly has our
friendship group in stitches about her faux pas (she is much funnier than I am).
It is not embarrassing in our close friendships, we have stories that make people laugh with us, even if it does give us both a lot of pain and mean we miss days of work and feel
crap. I am so proud of how she has become to own it and not be ashamed, and
we have found that if you are not embarrassed, then no one else is really.
Also, if I am in pain, I am able to say. IBS is never taken seriously for
the pain it can cause, yet some people end up in hospital with trapped wind
and the like.
Do not underestimate or undermine IBS- It is not a killer but I debilitates and literally irritates so give it the baby wipe of respect it deserves.
If you think you may have IBS, push to be refereed just to make sure it is
nothing else, and if it is then if there is anything they can do for you.
And if you do have it, try not to be so embarrassed and ensure you are dealing with
it best you can.
All my love,
And avoid coffee,
Your Smelly Monkey,
XXXX
Saturday, 21 June 2014
Day 149, It's My Birthday- A Midsummer Night's Dream
Endo 365
You’ll be pleased to know I am keeping this a short and sweet as possible as the Prosecco is crying for me, and I do not like to leave people (yes, I have just personified Prosecco- it’s my birthday donchaknow) waiting.
Due to having earnt my own money from the age of 12, generally speaking, if I want something, I buy it for myself. And I am proud of that. I am by no means independent but I have never lived off birthday and Christmas money if you catch my drift. So coming up to this birthday I only really wanted (a flight to America... Hint hint, pleasee) and a goat and chicken to be sent to Africa. I have since read some scary articles and have decided against it. So it doesn't look like I will be getting either.
As you may know, I am the Young Ambassador For the charity Endometriosis UK. Working with this charity has been game changing for me. Seeing the amazing things it manages to do and the incredible impact it has on women’s lives and their family's has been moving. Unfortunately due to the nature of this disease, youknow, being... bloody’n’all, it is pretty darn hard to fund raise for.
My Birthday wish is simple:
If you have read any of my blogs in the past and you have learnt something, or you have felt empowered, or it gave you comfort knowing you are not alone, or even if it made you smile, as a token of gratitude, please make a donation to Endometriosis UK, no matter how big or small http://endometriosis-uk.org/donate OR you can text ‘Endo14’ followed by the amount to 70070 (I feel like a presenter on children in need).
I volunteer up to five hours into one blog, and I love love love doing it. It is like therapy for me. However if you do appreciate it (hallelujah), then all I ask for in return is a little birthday present donation for me. Or why not even become a member? http://endometriosis-uk.org/become-member
The resourcefulness of this charity never fails to astound me, however as it is not government funded, it really does rely on us.
It’s Saturday, have a G&T for me,
Thank you to everyone who continues to read this blog, and all you beauts who email me,
All my love,
The Birthdaaaaaay Gallyyyy.
XXX
Thursday, 19 June 2014
Day ii65, Giving Blood and Setting Targets
Endo 365
Do not fear this is not
going to be some ‘Give-us-all-your-blood-because- we-are-about-to
emotionally-manipulate-you’ radio advert (they get me every time).
No no, this is all about
small miracles and having incentives (or carrots) to pedal towards.
Not following the link?
Understandable, let me explain.
Following my first
operation (when I got my diagnosis) I felt a very strong duty to aid the health
service in whichever civilian way I could- mainly for all the little dots who
were seriously ill around me and practically lived there, on our ward.
The very fact that a child
born without arteries leading back to his heart, gets a free and comprehensive
health care allowing him to live until his twenties instead of days is just the
most incredible thing. This probably won’t come as a surprise to you, but every
so often (usually when I am on a long drive) I end up having a real think about
the National Health Service as an institution that serves our country, and I cry. We are so so lucky to be born into a country with the facility for free point
of care health service. And I know I can be one of the first people to moan
about the NHS and its insufficiency’s, but in its essence, it is brilliant:
think about how different ‘Breaking Bad’ would be if it were set over here… just
sayin’… we are so lucky to live in a society where a constitution exists with
the 7th best health care in the world (above many privet health care nations)
where we need not worry about being hit with a huge bill on top of the trauma
resulting in us going to hospital, is such a privilege.
I have family in America and it genuinely
astounds them that we do not have to pay (I know we do indirectly through
taxes) for medical attention. If, like me, you have always lived in England and
you have, like me, been socially conditioned into thinking how inefficient the
NHS can be, just for a second, take a step back and actually think about what
the NHS actually is.
So, at times I get romantic
about the NHS as a socialist haven.
I think that it is because
of this that I have always felt it imperative to give blood and do
whatever small ripple I can, for something at such little cost to our wellbeing
can save another person’s life.
That to me is a no brainer.
However, I have never been
allowed to give blood (like many people with endo) because in the time I have
been old enough to give blood, my health or medication has not allowed for it.
And that made me miserable and felt like rubbing more salt in the wound. I have
either been too anaemic or fatigued or on too much medication or post opp’s.
So, for me, the simple,
normal, every-woman-every-man task of giving blood has been very high on my
agenda and conscience for the last three years. It was something to work
toward; something of great weight and importance to me. For me, it is on the
same agenda as establishing my business or picking the right university or
running a half marathon, even though giving blood is considered an everyday
thing.
Except because of my story,
history, context, it is so much of a greater thing.
So on the Monday before my
birthday I gave blood and it was just so perfectly liberating.
And (probablymaybe because
of the whoremoans) I cried. It felt like a victory, a real win. I wouldn’t have
been able to do this without my operation because I still would be have been on
GNrH.
Endometriosis (or anything
you have to battle in life) can short-term limit us, and unfortunately even
long-term sometimes. I do not think I would be half as motivated or
positive if I didn’t have anything to strive towards or feel proud for having overcome
and still achieved. Having fixed goals pioneers focus, having goals
inspires motivation, having goals creates discipline, having goals builds and
sustains a strong, healthy mind. It quantifies and measures the everyday things
we achieve without even realizing what a big deal it was to get up and go to
word when you don’t feel like it.
As I stated in my previous
blog, endo can induce an helpless, endless frustration because it isn’t like
breaking your leg. You can’t take it easy for 4 months and then in a years time
you forgot that you even did it. I will feel the repercussions from my
endometriosis for the rest of my life because it has sensitized my bowels to
about 40 different foods. However by setting goals, the endless nature becomes
more manageable.
Set some time aside and get
an A3 sheet and loads of coloured pens and just get it all down, then order it
realistically. It doesn’t matter whether the goal is climbing Mount Everest or
something simple but a sign of achievement to you like attending a full week at
school or work, explaining to three people in one day about your endometriosis,
or just giving blood.
Once you have your short-term
goals nailed, think long term. If you have read other blogs you may know I hate
wasted time, having a little list of goals ensures if there is an opportunity,
I always have something productive to do or work towards. During recovery I
even had things as futile as making a scrapbook from traveling on my list.
But it gave me focus and structure. So it doesn’t matter what it is really. It
is also very empowering, you are saving yourself piece at a time and not
surrendering to the pain.
“Success is not necessarily doing
big things. It can be doing little things in a great way.
Set achievable, yet desirable
goals and make yourself proud.
Be smart and be brave,
AL XXXX
Day 282, We Need YOU!
Endo 365
We often laugh that the reason we are not on anti-depressants is because of volunteering and I think there is some truth in that. I certainly need the charity far more than it needs me, the knowledge that I might be helping and am giving back is enough to help me sleep at night. So as well as this blog post being a plug for the amazing Carol to win as she so deserves to, if you feel like many of us do like you want to do something, visit the Endo UK website and see what volunteering capacity may suit you; from being trained up on the helpline to hosting a pink pants tea party we need you and I highly recommend its therapeutic benefits. I find it comforting because by actively and positively doing something out of my pain, I am elevating myself from that horrid victim status. It takes time to regroup and have enough of yourself to then give in this capacity so if you aren't up to it yet or simply do not have the energy, do not feel guilty, you have to be in the right frame of mind, maybe you can just plug awareness in your own circles.
As some of you may be aware, this week is 'National Trustee
Week' and as they do every year, The Guardian hold a competition for trustee of
the year.
Our very own Carol Pearson has made it very deservingly into
the top 5 and we need your vote.
Why vote for Carol? Well, she is certainly one of the most
inspirational people I have ever met and I certainly have a lot of time and
respect for her, as I do my fellow trustees. It is not for me to tell her
story, but endometriosis has definitely changed the course of her life and she
acts with such dignity, strength and
grace that you could mistake her for a real life heroine from a Dickens novel. Leeeegit. Anyway instead of going on like her biggest
fan I'll let The Guardian do the talking, here is her bio telling you all you
need to know:
" Carol is a trustee for Endometriosis UK and according to her nominator
nothing is too much trouble for Carol - from climbing Snowdon to donning pink
knickers. Her campaigning for patient involvement and voice has shaped the
charity and empowered people to manage their lifelong and incurable conditions.
Although she is a endometriosis sufferer herself she dedicates so much
time and effort to the charity that they say they would not be able to provide
the service without her.
Carol is said to be a invaluable advocate for endometriosis sufferers
who struggle with benefit and employment traumas and a superb speaker for the
charity. Recently, she gave a moving and informative Ted Talk to raise awareness. "
So please vote using your phone, laptops, tablets: http://www.theguardian.com/voluntary-sector-network/poll/2014/nov/08/trustee-of-the-year-award-2014?CMP=twt_gu
and pass it around your circles...
We often laugh that the reason we are not on anti-depressants is because of volunteering and I think there is some truth in that. I certainly need the charity far more than it needs me, the knowledge that I might be helping and am giving back is enough to help me sleep at night. So as well as this blog post being a plug for the amazing Carol to win as she so deserves to, if you feel like many of us do like you want to do something, visit the Endo UK website and see what volunteering capacity may suit you; from being trained up on the helpline to hosting a pink pants tea party we need you and I highly recommend its therapeutic benefits. I find it comforting because by actively and positively doing something out of my pain, I am elevating myself from that horrid victim status. It takes time to regroup and have enough of yourself to then give in this capacity so if you aren't up to it yet or simply do not have the energy, do not feel guilty, you have to be in the right frame of mind, maybe you can just plug awareness in your own circles.
Keep tapping at that wall,
Al XXXX
Day 309, Tears, Snot and Mascara
Endo 365
Now anyone that really knows me, knows that in some respects I have a icy
cold heart. Reading is probably my favourite past time, I connect with words
and stories and ideas and metaphors, and English Literature was my absolute
favourite subject at school. However unlike the other bookworms I know, I very rarely cry at books (unless they were about dying children or fertility) because,
well I am constantly aware that it is just a story. It is exactly the same with films. I have
friends who sit beside me tearing through the tissues at the Notebook or
Moulon Rouge whilst I sit there, profoundly moved or sad or whatever, but
unable to cry.
Meanwhile put on something as seemingly futile and 'comedic' as "What to
Expect When You're Expecting" and my face erodes into a meandering river of
tears, snot and mascara.
I, like most people in life, am not comfortable with being venerable. So
crying doesn't sit too easily with me- especially in anywhere public. Hence the car-park-crying ritual post consultation. Its a cracker.
That would be awfully 'un-British' of me. And Allie doesn't do crocodile
tears.
When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop. It is only afterwards that we tend to step back and think- Wow, that was solid. I was solid.
My earliest memory of crying was at a family day out at a theme park and I
must have been young as I had reins on (you know, like a dog lead but for
children. Yep my parents tied me up and walked me like a canine and they wonder why I have authoritative issues) Mother Darling left to go on one of those things that shoots you vertically up and waits...and waits... then comes hurtling back down again. I can remember screaming thinking it would collapse and kill my momma- I
couldn't understand why she had left me to do it... and worse, she left me
with dad. I mean who would feed me?! I would have grown up on a diet of
baked beens and silage wearing potato sacks as gucci. It is a funny memory but kinda distressing.
Firstly, I think we do not like crying because It is.. well it is upsetting
in its nature. However, if we have something to be upset about, then crying
allows us to express ourselves and vent. And it speeds up the process, the
storm passes so much quicker, like its on fast forward. If you bottle it up,
stuff festers and that isn't good. Who wants mouldy emotions?
When we are younger we cannot properly confront how we feel so things take
time to heal, but when we are sentient adults, we have no excuse bar
cowardice, not to confront the truth and deal with how we feel. As a kid I
was seriously bullied for five years. It took me almost double that to not be angry
anymore and accept an apology I never got. To some extents I think I will always be scared and effected by it but it has happened and I am sure as hell not going to let them still win today. I am a happier, better and bigger person now because of it. And in many ways I think of it as essential Karma... It equipped me swimmingly to mentally fight my endo. I do not believe that I would fair as well had I do now had I not had to work through that stuff as a younger Alice. So I have screamed and shouted and god knows I have cried and mourned for parts of my childhood, but the tears helped wash it under the bridge and now the burden has been lifted- and it feels great. And the best bit is that it taught me the importance of loving yourself from an early age which usually comes later on.
Endometriosis is crap. There is no two ways about it.
But so is cancer.
And living in poverty in Ethiopia.
And having your life tipped upside down in Syria.
And having your heart broken or losing a parent.
And a million other things.
The point is bad stuff happens every day, to all sorts of people; rich or poor, good or bad. Its is all
relevant to your life and your experiences and perspective- and unfortunatly there isnt much we can do about the facts of the situation.
Don't sell your self the illusion (which I am always guilty of doing) 'I
strong and I do not cry.' No Al, you're not a robot. You're an idiot sometimes
When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop.
Allow yourself that time.
It is good to have the occasional cry, and sometimes for no reason. I sobbed
all the way home from work the other day in the car, no one knew (except you
reading this) and now I feel so much better. Some people would liken it to being constipated but obviously that person would not be me..
When you have endo you have so much armour up all the time to get through
the daily routine. And you are my hero. But it's heavy- so give your self a
break but without indulging in it.
I know we often cry a lot form pain, but I am not talking about that.
Empower yourself to just be. As my annoying friends sometimes tell me, it is okay to be venrable.
And then you can carry on being superwoman.
All my love,
AlXXX
Now anyone that really knows me, knows that in some respects I have a icy
cold heart. Reading is probably my favourite past time, I connect with words
and stories and ideas and metaphors, and English Literature was my absolute
favourite subject at school. However unlike the other bookworms I know, I very rarely cry at books (unless they were about dying children or fertility) because,
well I am constantly aware that it is just a story. It is exactly the same with films. I have
friends who sit beside me tearing through the tissues at the Notebook or
Moulon Rouge whilst I sit there, profoundly moved or sad or whatever, but
unable to cry.
Meanwhile put on something as seemingly futile and 'comedic' as "What to
Expect When You're Expecting" and my face erodes into a meandering river of
tears, snot and mascara.
I, like most people in life, am not comfortable with being venerable. So
crying doesn't sit too easily with me- especially in anywhere public. Hence the car-park-crying ritual post consultation. Its a cracker.
That would be awfully 'un-British' of me. And Allie doesn't do crocodile
tears.
When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop. It is only afterwards that we tend to step back and think- Wow, that was solid. I was solid.
My earliest memory of crying was at a family day out at a theme park and I
must have been young as I had reins on (you know, like a dog lead but for
children. Yep my parents tied me up and walked me like a canine and they wonder why I have authoritative issues) Mother Darling left to go on one of those things that shoots you vertically up and waits...and waits... then comes hurtling back down again. I can remember screaming thinking it would collapse and kill my momma- I
couldn't understand why she had left me to do it... and worse, she left me
with dad. I mean who would feed me?! I would have grown up on a diet of
baked beens and silage wearing potato sacks as gucci. It is a funny memory but kinda distressing.
Firstly, I think we do not like crying because It is.. well it is upsetting
in its nature. However, if we have something to be upset about, then crying
allows us to express ourselves and vent. And it speeds up the process, the
storm passes so much quicker, like its on fast forward. If you bottle it up,
stuff festers and that isn't good. Who wants mouldy emotions?
When we are younger we cannot properly confront how we feel so things take
time to heal, but when we are sentient adults, we have no excuse bar
cowardice, not to confront the truth and deal with how we feel. As a kid I
was seriously bullied for five years. It took me almost double that to not be angry
anymore and accept an apology I never got. To some extents I think I will always be scared and effected by it but it has happened and I am sure as hell not going to let them still win today. I am a happier, better and bigger person now because of it. And in many ways I think of it as essential Karma... It equipped me swimmingly to mentally fight my endo. I do not believe that I would fair as well had I do now had I not had to work through that stuff as a younger Alice. So I have screamed and shouted and god knows I have cried and mourned for parts of my childhood, but the tears helped wash it under the bridge and now the burden has been lifted- and it feels great. And the best bit is that it taught me the importance of loving yourself from an early age which usually comes later on.
Endometriosis is crap. There is no two ways about it.
But so is cancer.
And living in poverty in Ethiopia.
And having your life tipped upside down in Syria.
And having your heart broken or losing a parent.
And a million other things.
The point is bad stuff happens every day, to all sorts of people; rich or poor, good or bad. Its is all
relevant to your life and your experiences and perspective- and unfortunatly there isnt much we can do about the facts of the situation.
Don't sell your self the illusion (which I am always guilty of doing) 'I
strong and I do not cry.' No Al, you're not a robot. You're an idiot sometimes
When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop.
Allow yourself that time.
It is good to have the occasional cry, and sometimes for no reason. I sobbed
all the way home from work the other day in the car, no one knew (except you
reading this) and now I feel so much better. Some people would liken it to being constipated but obviously that person would not be me..
When you have endo you have so much armour up all the time to get through
the daily routine. And you are my hero. But it's heavy- so give your self a
break but without indulging in it.
I know we often cry a lot form pain, but I am not talking about that.
Empower yourself to just be. As my annoying friends sometimes tell me, it is okay to be venrable.
And then you can carry on being superwoman.
All my love,
AlXXX
Thursday, 12 June 2014
Day 130, Hocus-Pocus-And-Everything-Acupuncture
Endo 365
Okay, so if you have read a blog of mine previously (bless
you) then you may be aware that I am a closet hippie and am up for giving
anything a go and generally keep my mind as open as my gob.
So of course, Alice has taken a little tip down the route of
acupuncture.
Or as my very dyslexic grandma calls is (I love you, you gorgeous
little shrivy): ’Ackie-Punchie’
As you man know, I have been doing it now for three months but only wanted to write a blog after the dust had settled and I felt I could reflect more objectively.
As you man know, I have been doing it now for three months but only wanted to write a blog after the dust had settled and I felt I could reflect more objectively.
I have read numerous times over the past five years about acupuncture
being brilliant for endo, and for some reason never took it up. I think there
is an element of variables: when you are pursuing different medical routes you
try and stick to one new thing to work out whether it makes a difference. So
perhaps I didn’t want to mix voodoo and menopause- who knows.
All I know is that two
months after my ‘metamorphosis’ surgery
I was getting in increasing daily pain and we all started panicking. A friend
of mine was just about to start Ackieeeeee-Punchieee so not one to miss out; I
decided to give it a go.
I am very lucky as one of my jobs is for a Marketing
Consultancy Firm and one of our clients is a brilliant natural health care
centre. So I popped down for my initial consultation (£75 Yikes!) which was two
hours long talking about everything from car crashes at 3, to endo, to my bowel
movements and ‘emotional wellbeing’.
And yes I did cry, okay? She is just so lovely and understanding I wanted to
call her aunty, climb into her oversized jumper and hug her. But I didn’t, in
fear she wouldn’t see me again.
She rightly was very straight with me from the offset;
because of the prolonged intense pain my body has been under, the initial
course of acupuncture would have to be fairly intensive and then we could ease
off until hopefully I will only need to come home from uni once a month for a
lil top up. I was told there was no point pursuing it unless we were going to
do it properly; they no more undersubscribe than oversubscribe. We agreed to me going three half-hours a week
for three months (with massive discounts) and then reducing it from that.
However for some reason my body responded very swiftly and I only ever had it
twice a week and that soon reduced to thrice fortnightly.
It is an interesting experience… I never research things
like this before trying it so I have no subconscious preconceptions. However
just from general discourse I had imagined that I would be lying on my front
with a thousand pins dotted all over my back and in pain, coming out of the session
looking like a colander.
However, this could not be further from the truth.
They are just little hair sized pins that are so tiny they
do not draw blood or leave a mark, you cannot I can only feel them go in on
areas where there isn’t much fat like my feet and they are left in until you
feel something.
It is different for everyone, but for me… Its like a pull towards the
pin and then a slight (nice) electric shock. I sound crazy I know but I am
still in amazement with this. Here is a proper explanation from the British Acupuncture
Council:
“In general, acupuncture is believed to stimulate the nervous system
and cause the release of neurochemical messenger molecules. The resulting
biochemical changes influence the body's homeostatic mechanisms, thus promoting
physical and emotional well-being. Stimulation of certain acupuncture points
has been shown to affect areas of the brain that are known to reduce sensitivity
to pain and stress.
There is preliminary evidence to support acupuncture as an effective
treatment for endometriosis, with one small sham controlled trial (Wayne 2008)
and a few comparative studies against Western medication (Yan 2008, Xia 2006,
Sun 2006), though further research is needed to confirm this.
It has been shown that acupuncture treatment may specifically be of
benefit in people with endometriosis by: providing pain relief - by stimulating
nerves located in muscles and other tissues, acupuncture leads to release of
endorphins and other neurohumoral factors, and changes the processing of pain
in the brain and spinal cord. It reduces inflammation - by promoting release of
vascular and immunomodulatory factors Kavoussi , and regulates levels of prostaglandins.”
I read that Western technology is beginning to catch up with
ackieee-punchie and they have given MRI scans to people receiving it, where
they can see different areas of the brain reacting to the treatment.
It is still hard to
explain why it is so darn good for chronic pain conditions and raising your immune
system, however having now tried it for three months, I can honestly say it is
working. And I do not care whether it is a helping-yourself-placebo, because I
am far less tired for doing it and I do not wake up in pain every day any more.
The down sides are that it is expensive. If you go to a
practitioner, they generally will come to some payment deal with you because if
they really are invested in helping people, they will want to meet you on a
middle ground.
However, acupuncture is now available one the NHS- arm yourself with education about
acupuncture, empower yourself and take your GP. They may not be game, but do
not take no for an answer- you are (I do not use this word often) entitled for an acupuncture referral if
you suffer from chronic pain and endo. Keep going back until they agree. There is
something terribly un-British about
making a nusence of yourself, but if it betters you in the long run- who cares?
To wake up not in pain, indeed Chris” I'd
run round Skipton market naked, smeared in plum jam, wearing nothing but a
knitted tea cosy on me head and singing "Jerusalem".
Or if you do have privet health care or what not and would like to go independently then research places local to do, there is ever more choice so ensure you pick the right one. Ring up and ask for some information and make an informed decision before choosing which is the right place for you.
And I really must stress, that this is not for everyone. Unfortunately this did not work for a very good friend of mine. But she is still glad she tried it because we have to give ourselves the best chance and exhaust every option.
If you have any stories, or would like any more advice,
please feel free to contact me: alice.smith@marriottfarm.co.uk
All my love,
Enjoy this weather if you can my little minx’s
Al XXX
P.s I really would like to say a huge thank you to my mother for supporting me through this both financially and giving me the little push of confidence to try it. Thank you for being so inspirationally proactive and supportive; allowing and encouraging me to give everything a go.
Thursday, 22 May 2014
Day 108, The Cup and String
Endo 365
Ye Olde Cup and String
One of the best words to singularly describe endometriosis (if you can) is this: Debilitating.
Ironically, I am writing this blog to you sat in my PJ's (it has gone four o'clock in the afternoon) sat on my settee with 'Midsomers Murders' in the back ground. Tragic I know, and if I don't shower soon, mum will refuse to bring me anymore rose teas.
Disgusting. You just cannot find the staff these days.
Anyway, the point is- I should be in a summery suit today selling my little hind off at work today. But I am not. Instead my hind is losing the will to live listening to Inspector Barnaby and Co. Bare with me because even if you do not have endo, the same principles in this blog apple to anything you struggle with or problems you may have to over come...
So it is important that we have a support network around us at times like this. It doesn't necessarily have to be people with endo, although speaking to other people who know exactly what you are going through is beautifully cathartic.
When I was diagnosed at 14, I did not know what it was, let alone my peers who hadn't had any gynaecological problems, especially the boys! So I felt incredibly (and I mean that in its proper sense) isolated. And a bit like a freak. And the last thing you need on top of the pain and emotional trauma is self pity.
When diagnosed with endo it is easy to feel like a freak show. Now of course you learn that that is stupid, however at the beginning it is not like that. It feels like no one you come into contact with knows what Endometriosis is, which furthers the isolation and can belittle it and can be embarrassing like you are making it up (!).
To ensure I remained sane, I realise now that I built my own small, but solid network. An intimate few best friends who I was very honest with and could articulate, vent, cry, laugh, and fine solace.
Never let pride or fear keep you from being honest from your real friends. You soon learn who they are and what they are made of. Unfortunately not everyone steps up to the plate, but its not because they do not love you, but either their fighting their own battles or just do not have it in them to fight yours. Things like endometriosis equip you with the tool to be strong enough to those who need you, and that is a silver lining gift.
The more I started dipping my toe into the endometriosis networking warters via twitter, emails and attending events, the more fulfilling it became. I thought I had about made it in terms of having amazingly strong friends to support me, I thought I was sorted... But I found comfort that I didn't realise I could achieve from sharing my story and hearing others.
Be brave; take the plunge.
It isnt easy, your heart is on a platter to virtual strangers and sometimes there are hives of negativity. My advice is avoid the black hole cases like the plague; they are toxic. And do not become one. Those two simple rules should be enough to safeguard you.
Sharing your story can be very very draining so be prepared. Things are always worse when you are whoremonal and tired. And some days I just do not have enough reserved to tell my story. Be kind with yourself, strike a strong and healthy balance.
However I can honestly say that sharing my story is the key to my acceptance with it all. I was angry for quite a while- Why me? Why does no one know what endometriosis is when it has such a monumental impact on my life? So I decided to do something about it. I cannot take it away but I can ensure my life and the people in it never feel embarrased or uneasy, I tackled the elephant in the room and it is great to talk about it. I found talking about it liberating and a sort of therapy. If you haven't already, try it. I dare ya.
In the last few years 'Endometriosis UK' has undergone a huge change and offers far more to teenagers now than ever before (Beret's off to them). With support groups mushrooming, and an increasing online support network, things are heading in the right direction, however everyone can do their bit to aid this process. Raise awareness via your social media, offering your most positive and helpful nugget of knowledge and advice to those who need it- or just listening.
Sorority.
Sisterhood.
Chicks before Dicks.
Hoes before those pesky Bros.
You know what I'm getting at. Communication is essential to not only spreading awareness, but empowering fellow sufferers in the knowledge that you are not alone in what and how you feel, and what is amazing is that you do not need to explain in great detail because they know exactly what you mean.
An ineffable, universal understanding amongst fellow people.
Straight from the Endo UK website:
'Endometriosis UK Online Support Groups take place each month using Skype. The purpose of these groups to is provide a support and information to women who don’t have access to a local support group and feel isolated.
Each month our trained Online Support Group leaders choose a topic to focus on and discuss with group members.
How do I join an Online Support Group?
If you would like to join the Online Support Group, please email your name, skype username and the email address it is registered to, along with your phone number to support@endometriosis-uk.org.'
If you are a teen with endo, and you'd like to partake in a online support group on skype with me- then just sign up here: http://endometriosis-uk.org/civicrm/event/info?reset=1&id=37#.U341k9q9KSM - But be quick as there are only limited spaces! I'll see you there!!
All my love,
Be strong and stay positive,
And if you would like to share your story with me, I love sharing with new people: alice.smith@marriottfarm.co.uk
Al XXXX
Ye Olde Cup and String
One of the best words to singularly describe endometriosis (if you can) is this: Debilitating.
Ironically, I am writing this blog to you sat in my PJ's (it has gone four o'clock in the afternoon) sat on my settee with 'Midsomers Murders' in the back ground. Tragic I know, and if I don't shower soon, mum will refuse to bring me anymore rose teas.
Disgusting. You just cannot find the staff these days.
Anyway, the point is- I should be in a summery suit today selling my little hind off at work today. But I am not. Instead my hind is losing the will to live listening to Inspector Barnaby and Co. Bare with me because even if you do not have endo, the same principles in this blog apple to anything you struggle with or problems you may have to over come...
So it is important that we have a support network around us at times like this. It doesn't necessarily have to be people with endo, although speaking to other people who know exactly what you are going through is beautifully cathartic.
When I was diagnosed at 14, I did not know what it was, let alone my peers who hadn't had any gynaecological problems, especially the boys! So I felt incredibly (and I mean that in its proper sense) isolated. And a bit like a freak. And the last thing you need on top of the pain and emotional trauma is self pity.
When diagnosed with endo it is easy to feel like a freak show. Now of course you learn that that is stupid, however at the beginning it is not like that. It feels like no one you come into contact with knows what Endometriosis is, which furthers the isolation and can belittle it and can be embarrassing like you are making it up (!).
To ensure I remained sane, I realise now that I built my own small, but solid network. An intimate few best friends who I was very honest with and could articulate, vent, cry, laugh, and fine solace.
Never let pride or fear keep you from being honest from your real friends. You soon learn who they are and what they are made of. Unfortunately not everyone steps up to the plate, but its not because they do not love you, but either their fighting their own battles or just do not have it in them to fight yours. Things like endometriosis equip you with the tool to be strong enough to those who need you, and that is a silver lining gift.
The more I started dipping my toe into the endometriosis networking warters via twitter, emails and attending events, the more fulfilling it became. I thought I had about made it in terms of having amazingly strong friends to support me, I thought I was sorted... But I found comfort that I didn't realise I could achieve from sharing my story and hearing others.
Be brave; take the plunge.
It isnt easy, your heart is on a platter to virtual strangers and sometimes there are hives of negativity. My advice is avoid the black hole cases like the plague; they are toxic. And do not become one. Those two simple rules should be enough to safeguard you.
Sharing your story can be very very draining so be prepared. Things are always worse when you are whoremonal and tired. And some days I just do not have enough reserved to tell my story. Be kind with yourself, strike a strong and healthy balance.
However I can honestly say that sharing my story is the key to my acceptance with it all. I was angry for quite a while- Why me? Why does no one know what endometriosis is when it has such a monumental impact on my life? So I decided to do something about it. I cannot take it away but I can ensure my life and the people in it never feel embarrased or uneasy, I tackled the elephant in the room and it is great to talk about it. I found talking about it liberating and a sort of therapy. If you haven't already, try it. I dare ya.
In the last few years 'Endometriosis UK' has undergone a huge change and offers far more to teenagers now than ever before (Beret's off to them). With support groups mushrooming, and an increasing online support network, things are heading in the right direction, however everyone can do their bit to aid this process. Raise awareness via your social media, offering your most positive and helpful nugget of knowledge and advice to those who need it- or just listening.
Sorority.
Sisterhood.
Chicks before Dicks.
Hoes before those pesky Bros.
You know what I'm getting at. Communication is essential to not only spreading awareness, but empowering fellow sufferers in the knowledge that you are not alone in what and how you feel, and what is amazing is that you do not need to explain in great detail because they know exactly what you mean.
An ineffable, universal understanding amongst fellow people.
Straight from the Endo UK website:
'Endometriosis UK Online Support Groups take place each month using Skype. The purpose of these groups to is provide a support and information to women who don’t have access to a local support group and feel isolated.
Each month our trained Online Support Group leaders choose a topic to focus on and discuss with group members.
How do I join an Online Support Group?
If you would like to join the Online Support Group, please email your name, skype username and the email address it is registered to, along with your phone number to support@endometriosis-uk.org.'
If you are a teen with endo, and you'd like to partake in a online support group on skype with me- then just sign up here: http://endometriosis-uk.org/civicrm/event/info?reset=1&id=37#.U341k9q9KSM - But be quick as there are only limited spaces! I'll see you there!!
All my love,
Be strong and stay positive,
And if you would like to share your story with me, I love sharing with new people: alice.smith@marriottfarm.co.uk
Al XXXX
Saturday, 3 May 2014
Day 90, My Three Month Anniversary
Endo 365
I'ma let you into a little secret: The last threeish months I have been struggling more than I have let on. I would say one month and a half into recovery I was getting increasing pain and more frequently. The pain should be going down slowly after my op. So we had a fun trip down to see my surgeon (they're always fun because Bicester Village is en route home and mummy is always feeling sorry for me... Yay to guilt ridden presents).
He basically said that my pain should not be increasing and perhaps this pain is not down to the endo (which no longer currently resides in my tummy, although there is life long damage to which it has kudos for). He believes the pain may be down to my ovaries- which is realistically a whole new dump of shite. If anyone knows anything relating to ovulation pain etc, could you be a darling and tell me? alice.smith@marriottfarm.co.uk
Now we have got rid of my endo, the the marina coil which stops it from growing back does not switch my ovaries off which is probably now causing me pain, but if we go on the oestrogen led back-to-back pill to knock off Ye Olde ovaries, then the endo will grow back.
Can I ever win? Typical.
Of course I can, I am just being dramatic.
Anyway, it was quite horrible news, momma and al cried in the car park as only true Brits would. It felt like I had just been awarded the albatross around my neck; a life sentence of pain until I had 'The Hysteria Removed' (hysterectomy). Which could be 15 years of daily agony. And that's IF I find someone stupid enough to marry me.
But as always, I have now digested this news and am feeling positive.
(In Welsh accent for those of you have watched Gavin and Stacey) And I shall tell you for why.
Rational Al kicked in: It has only been three months since my op. I now realise being back to normal within a week was perhaps, maybe, a little optimistic and neieve. However the more I think about it: my stomach has been sliced and diced and I suddenly have all these hormones I haven't had for four years. OF COURSE things will take a minimum of six months before I establish any normality. And in the meantime, I shall enjoy the morphine.
Three months really is not enough time to give the coil to settle in when you're mystical organs are as pedantic as mine. I am young, gynaecologically defective, recovering from and op and reopening the can of mensturation and hormones so of course it will take longer than the average time to settle in and sort out. Just Relax, take it easssssyyyy.
And finally, if the worst case senareo becomes my reality, and this is it, then, well... it is what it is.
I can only accept it and work with it, being upset and defeated by it is not unfortunatley, going to take the pain away. I will just have to learn to cope and live with it because that will be my reality. I'm not saying that I won't see every specialist possible. I am not saying I won't pursuit my diet and accupuncture and yoga. I am not saying that I will lie down and take the pain, indeed I shall exhaust every possible avenue of hope. But I will accept it if it is my reality like I accept replacement bus services: annoying but you've got to adapt and go with it.
I have started accupuncture but that is a whole new story for another blog i'm planning once I am further into my course. Touch wood, so far so good.
One of the weirdest things for me is after four years, no longer being on my menopause. You can read all about my WhoreMoan related troubles in my last blog.
All in all, when all is said and done, at the end of the day, life is good.
Life is so good. And I choose to enjoy it. Simple as A, B, C.
The summer is approaching, I have so much to look forward to and come this time next week i'll have finally firmed the university to which I will be studying at for the next three years (Last minute as ever).
When I reflect over how I felt three months ago, I know a lot more now... Which is a strange thing to say. I know my fertility- which is a good knowledge as it is positive news and one less worry. I know even more about the condition and my own body. I can begin to predict and expect things about my life in the future.
I am on the better side, with hopefully in many ways, the worst time behind me. And if there are bad times ahead which I anticipate, I will equip myself with the strongest tools to fight with.
And I'll have a hell of a lot of fun on the way.
Be brave, be strong and be happy,
Here's evidence of my happiness three months on,
Now I'm off to do a tour of all the beer gardens in Leicestershire. I shall Let you know the results.
All my love,
Al XXX
I'ma let you into a little secret: The last threeish months I have been struggling more than I have let on. I would say one month and a half into recovery I was getting increasing pain and more frequently. The pain should be going down slowly after my op. So we had a fun trip down to see my surgeon (they're always fun because Bicester Village is en route home and mummy is always feeling sorry for me... Yay to guilt ridden presents).
He basically said that my pain should not be increasing and perhaps this pain is not down to the endo (which no longer currently resides in my tummy, although there is life long damage to which it has kudos for). He believes the pain may be down to my ovaries- which is realistically a whole new dump of shite. If anyone knows anything relating to ovulation pain etc, could you be a darling and tell me? alice.smith@marriottfarm.co.uk
Now we have got rid of my endo, the the marina coil which stops it from growing back does not switch my ovaries off which is probably now causing me pain, but if we go on the oestrogen led back-to-back pill to knock off Ye Olde ovaries, then the endo will grow back.
Can I ever win? Typical.
Of course I can, I am just being dramatic.
Anyway, it was quite horrible news, momma and al cried in the car park as only true Brits would. It felt like I had just been awarded the albatross around my neck; a life sentence of pain until I had 'The Hysteria Removed' (hysterectomy). Which could be 15 years of daily agony. And that's IF I find someone stupid enough to marry me.
But as always, I have now digested this news and am feeling positive.
(In Welsh accent for those of you have watched Gavin and Stacey) And I shall tell you for why.
Rational Al kicked in: It has only been three months since my op. I now realise being back to normal within a week was perhaps, maybe, a little optimistic and neieve. However the more I think about it: my stomach has been sliced and diced and I suddenly have all these hormones I haven't had for four years. OF COURSE things will take a minimum of six months before I establish any normality. And in the meantime, I shall enjoy the morphine.
Three months really is not enough time to give the coil to settle in when you're mystical organs are as pedantic as mine. I am young, gynaecologically defective, recovering from and op and reopening the can of mensturation and hormones so of course it will take longer than the average time to settle in and sort out. Just Relax, take it easssssyyyy.
And finally, if the worst case senareo becomes my reality, and this is it, then, well... it is what it is.
I can only accept it and work with it, being upset and defeated by it is not unfortunatley, going to take the pain away. I will just have to learn to cope and live with it because that will be my reality. I'm not saying that I won't see every specialist possible. I am not saying I won't pursuit my diet and accupuncture and yoga. I am not saying that I will lie down and take the pain, indeed I shall exhaust every possible avenue of hope. But I will accept it if it is my reality like I accept replacement bus services: annoying but you've got to adapt and go with it.
I have started accupuncture but that is a whole new story for another blog i'm planning once I am further into my course. Touch wood, so far so good.
One of the weirdest things for me is after four years, no longer being on my menopause. You can read all about my WhoreMoan related troubles in my last blog.
All in all, when all is said and done, at the end of the day, life is good.
Life is so good. And I choose to enjoy it. Simple as A, B, C.
The summer is approaching, I have so much to look forward to and come this time next week i'll have finally firmed the university to which I will be studying at for the next three years (Last minute as ever).
When I reflect over how I felt three months ago, I know a lot more now... Which is a strange thing to say. I know my fertility- which is a good knowledge as it is positive news and one less worry. I know even more about the condition and my own body. I can begin to predict and expect things about my life in the future.
I am on the better side, with hopefully in many ways, the worst time behind me. And if there are bad times ahead which I anticipate, I will equip myself with the strongest tools to fight with.
And I'll have a hell of a lot of fun on the way.
Be brave, be strong and be happy,
Here's evidence of my happiness three months on,
Now I'm off to do a tour of all the beer gardens in Leicestershire. I shall Let you know the results.
All my love,
Al XXX
Monday, 28 April 2014
Day 85, WhoreMoans
Endo 365
WhoreMoans AKA Crappy hormones (Also an oxymoron as they are always crappy, oh gosh so punny)
Yep- this blog has been long overdue.
And one of the reasons for this is because, well, I haven't had any hormones. Or at least, I haven't had any for almost five years and so these last three months since my op where I have suddenly developed breasts and feelings has been a strange but rather exciting one.
Lemme expand: Having had my ovaries shut down since I was 14, I have escaped the typically dramatic, irrational and traumatic symptoms of being a teenage girl. GNrH irradiated my body gynaecologically of being anything other than a 90 year old which is kinda strange but no periods and no spots are a winning combination for anyone, even boys although the latter is only relevant.
One of the weirdest things about no longer being on my menopause is that suddenly I have these totally irrational and unprovoked diva tantrums and chaos erupts in the repressed annoying female part of my brain. I am aware of myself getting snappy-dude about something that previously would have washed over me. And it is so annoying, I have to force myself to step outside of the situation and give myself a metaphorical slap in the face. I pride myself upon being low maintenance (yeah thats right- I said it) and just rolling with the flow of whatever. But there are now occasionally little devil voices getting me unnecessarily agro about stupid suff. And that is annoying.
Growing up I have always been an agony aunt to my friends and siblings which I love. Those people who commonly complain that people only come to them for advice when they need it shouldn't feel begrudging of that. Be proud that you are the person they feel they can turn to when they need reason, sense, a little love and maybe some fair truths, If you are this person, be proud. ANYWAY. Growing up, especially in the last 5 years, peers have always seeked my council and I would absolutely be able to empathise and advise to the best of my knowledge. However I would secretly question whether I was a sociopath as I was unaffected by the same worries and concerns.
I assumed this was because maybe I'm a little mature for my age or because I have a fair amount of life experience under my belt, or because I pretty much know who I am, especially for an 18 year old. But I was wrong.
So, so wrong.
The reason those matters didn't factor into my life was not because I am as cool as a cucumber, but because chemically, my brain wasn't wired in the same way. I was vaguely aware of this at the time but you only realise the difference things make afterwards.
I was not exempt from petty discourse but immune to thinking that way. The potential was within me, just repressed.
Serves me right for thinking I was low-maintenance eh?
Since my hormones have been switched back on, I am beginning to realise the difference it has made, but I quite like it. It is almost like I'm normal.
Almost.
I am getting spots cyclically, becoming irrational, agro and worried without due reason, my boobs have grown (wahoo, maybe one day I will fill a AAAAA).
I can remember why I used to call them 'whoremones' now- because they're no fun and so anti sisterhood I can't even tell you.
I had a great ride being a rational autonomous human being, but I have now landed back into the female world of mayhem and madness, and its kind of nice to be back. Even if I do feel my thighs are a little too fat.
F.Y.I. These WhoreMoans have changed my views towards my own figure... I weight no more than I did before they were unleashed around my bloodstream, and my clothes fit exactly the same, however I feel in myself more insecure about my figure. I know objectively that this is not my body but these whoremoans. So its worth baring in mind that you aren't actually fat, or anything like how you feel in the slightest. Its those pesky anti-sisterhood whoremoans.
To those people who's heads are bitten off and made into BBQ meat- I apologise and we should brain storm about the business opportunities in my new ability to breathe fire. I believe it to be a family trait. I would appreciate it if you didn't sell me to the circus though.
On a serious note, (Sorry for lowering the tone) do not beat yourself up for how you are around a certain time of month. Never repress yourself, but bare in mind that it isn't you, you would never react like that, you have been hijacked by the anti-feminists pirates 'Whoremones'. So count to 3, deeeeeeeeep breaaaath and ask yourself whether your reaction is proportionate and whether you are actually cross. From a family where women have historically, without fail suffered from PMS (You can even look us up in the loony bin, we're famous- you go girls) I want to urge people to not be embarrassed, go to your doctor and get it sorted if it is a serious issue. My momma ended up having a full hysterectomy (literally removing the hysteria) to solve it. Very few women are as extreme as my matriarch though so do not fear. Try and be rational, be kind to yourself and be open.
Because of my personality, I do not think I will suffer to any extremes hormonally, thankfully. However there is no shame if you do, you haven't done anything to warrent it.
My hormones are a walk in the park compared to the rest of it, I just thought it was interesting and I would share the change with you, a lighter blog and a big of a giggle.
Learn from my mistake, never underestimate women's WhoreMoans,
All my love to you crazy Moo's,
Al XXX
WhoreMoans AKA Crappy hormones (Also an oxymoron as they are always crappy, oh gosh so punny)
Yep- this blog has been long overdue.
And one of the reasons for this is because, well, I haven't had any hormones. Or at least, I haven't had any for almost five years and so these last three months since my op where I have suddenly developed breasts and feelings has been a strange but rather exciting one.
Lemme expand: Having had my ovaries shut down since I was 14, I have escaped the typically dramatic, irrational and traumatic symptoms of being a teenage girl. GNrH irradiated my body gynaecologically of being anything other than a 90 year old which is kinda strange but no periods and no spots are a winning combination for anyone, even boys although the latter is only relevant.
One of the weirdest things about no longer being on my menopause is that suddenly I have these totally irrational and unprovoked diva tantrums and chaos erupts in the repressed annoying female part of my brain. I am aware of myself getting snappy-dude about something that previously would have washed over me. And it is so annoying, I have to force myself to step outside of the situation and give myself a metaphorical slap in the face. I pride myself upon being low maintenance (yeah thats right- I said it) and just rolling with the flow of whatever. But there are now occasionally little devil voices getting me unnecessarily agro about stupid suff. And that is annoying.
Growing up I have always been an agony aunt to my friends and siblings which I love. Those people who commonly complain that people only come to them for advice when they need it shouldn't feel begrudging of that. Be proud that you are the person they feel they can turn to when they need reason, sense, a little love and maybe some fair truths, If you are this person, be proud. ANYWAY. Growing up, especially in the last 5 years, peers have always seeked my council and I would absolutely be able to empathise and advise to the best of my knowledge. However I would secretly question whether I was a sociopath as I was unaffected by the same worries and concerns.
I assumed this was because maybe I'm a little mature for my age or because I have a fair amount of life experience under my belt, or because I pretty much know who I am, especially for an 18 year old. But I was wrong.
So, so wrong.
The reason those matters didn't factor into my life was not because I am as cool as a cucumber, but because chemically, my brain wasn't wired in the same way. I was vaguely aware of this at the time but you only realise the difference things make afterwards.
I was not exempt from petty discourse but immune to thinking that way. The potential was within me, just repressed.
Serves me right for thinking I was low-maintenance eh?
Since my hormones have been switched back on, I am beginning to realise the difference it has made, but I quite like it. It is almost like I'm normal.
Almost.
I am getting spots cyclically, becoming irrational, agro and worried without due reason, my boobs have grown (wahoo, maybe one day I will fill a AAAAA).
I can remember why I used to call them 'whoremones' now- because they're no fun and so anti sisterhood I can't even tell you.
I had a great ride being a rational autonomous human being, but I have now landed back into the female world of mayhem and madness, and its kind of nice to be back. Even if I do feel my thighs are a little too fat.
F.Y.I. These WhoreMoans have changed my views towards my own figure... I weight no more than I did before they were unleashed around my bloodstream, and my clothes fit exactly the same, however I feel in myself more insecure about my figure. I know objectively that this is not my body but these whoremoans. So its worth baring in mind that you aren't actually fat, or anything like how you feel in the slightest. Its those pesky anti-sisterhood whoremoans.
To those people who's heads are bitten off and made into BBQ meat- I apologise and we should brain storm about the business opportunities in my new ability to breathe fire. I believe it to be a family trait. I would appreciate it if you didn't sell me to the circus though.
On a serious note, (Sorry for lowering the tone) do not beat yourself up for how you are around a certain time of month. Never repress yourself, but bare in mind that it isn't you, you would never react like that, you have been hijacked by the anti-feminists pirates 'Whoremones'. So count to 3, deeeeeeeeep breaaaath and ask yourself whether your reaction is proportionate and whether you are actually cross. From a family where women have historically, without fail suffered from PMS (You can even look us up in the loony bin, we're famous- you go girls) I want to urge people to not be embarrassed, go to your doctor and get it sorted if it is a serious issue. My momma ended up having a full hysterectomy (literally removing the hysteria) to solve it. Very few women are as extreme as my matriarch though so do not fear. Try and be rational, be kind to yourself and be open.
Because of my personality, I do not think I will suffer to any extremes hormonally, thankfully. However there is no shame if you do, you haven't done anything to warrent it.
My hormones are a walk in the park compared to the rest of it, I just thought it was interesting and I would share the change with you, a lighter blog and a big of a giggle.
Learn from my mistake, never underestimate women's WhoreMoans,
All my love to you crazy Moo's,
Al XXX
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