Endo 365
Quick question: If you could choose one super power what would it be...?
Its about time that I sat down with some sloe gin and divulged some stories and some thought processes that I have had over the last few months... I am sorry that I have not been disciplined in writing, between end of year exams and spending a month in Uganda, a few things had to take a back bench. And now armed with a laptop that actually has spell check, I, the dyslexic typer, and you, the bewildered reader, have hope that this experience may go on like the happy marriage they always has been.
If you have read one of my blogs before (your poor, but loyal soul) may know that all blogs have a theme, as even when poised with direction, I tend to tinker off on a tangent. Well, today I thought we could start with an idea that struck me during a post-swim-shower in the chlorine fuelled Manchester Aquatics Centre; Invisibility as a super power (thats what you all answered to the original question right? At least thats what I have done since I was like... five).
Now time after time when speaking and sharing with fellow sufferers, one thing consistently comes up; the infuriating helplessness that is felt by endometriosis being an invisible disease. Short of scars from operations and being being doubled up in pain, there is absolutely no physical trace of any reason for suffering or upset. When people learn about your story and the burden one carries from this sneaky, silent assassin, quite often they are shocked and comment on how well you look- or in some cases women are not believed about the seriousness of their condition because they 'don't look ill'. Now this is infuriating because when you know that there are times when you are admitted into A&E from chronic labour like pain but you manage it so well that the world doesn't see, some credible recognition when you take the courage to tell your reality would be warmly accepted. However in my experience, 9/10 people that hear your truth will be open minded and ready to listen with sincerity.
So as isolating and frustrating the invisibility of our condition is, ever the sales women, I'm going to put a positive spin on it. And hopefully like me, you may see the beauty in the invisibility.
Back to my story; I have finished my swim and am taking a shower before university. Now these may be the worst showers in the world as they are communal and I'm pretty sure the water has been recycled from the pool. So I'm showering awkwardly with bikini still on, washing away shampoo with chloriney-baby-pissy-water ensuring not to make eye contact with anyone else in there because we are British- a loud mouth eight year old disrupts our peace (there are four of us showering in invisible cocoons) shouting "WHERE IS YOUR LEG?!" It turns out one of the men in the shower had a leg amputated from mid thigh down. Everyone continued with their Englishness and ignored her until she went away. However it struck me about how this gentleman probably feels isolation and frustration but for the opposite reasons that we do; furthermore that we have total control over who we bless with our story and who we do not. The other three in the shower do not know that my insides look like the ending of a horror film or that I had a little morphine patch on my bottom. My truth is under my lock and key, invisibility can be a super power not just a further ailment.
Rejoice at the fact that you're in the driving seat over one aspect of this condition, enjoy being a freaking superhero and rock the gift that invisibility brings.
All my love,
Al XXX
Sunday 26 July 2015
Friday 27 March 2015
Day ii53, Leg Vs Tum
Endo 365
I have been meaning to write this blog for a while however I have been having trouble formulating exactly how I feel. I want this notion to be clear and articulate. No pressure lexi...
I am finally off crutches and although I still cannot physically exceed walking (if a man was running as me with a knife I would honestly be screwed, I couldn't run even if I wanted to- which feels weird). Walking is giving me less pain each day and the swelling is slowly starting to subside. And it is such a novel, lovely feeling to be able to see the change and development- that there is positive development at all. A very definite beginning and a clear finish line.
Incase you didn't know, I had a very nasty rugby accident on the 3rd of December, my ankle was dislocated with a shattered socket, ball and total and patrial breaks up my leg. I am finally off crutches and getting back to normality.
By compairing my accident with my endo has made me realise a few things. It has, in some ways, been a blessing breaking my leg. It has enabled me to understand, seperate and define what makes endo so difficult. And you know what, this defining apifany was very empowering, and I would like to share it with you.
The first one is not revolutionary. Endometriosis is difficult because it is a totally invisable disease. This is both a blessing and a curse. Its a blessing when we do not want a fuss making, want to fit in and be 'normal' (whatever that is, last night I made fun with a 70 year old drag queen who had just had a hip operation). But that makes it hard for people, including doctors, to treat sympoms as seriously as they need to be, and understand how deblilitating it is. People are always so suprised and shocked if I explain about my condition, because they aren't there when it is bad and if its mild I am a super ninja at glossing over it. Cool as a Pesky Courgette. It makes things difficult and fustraiting because you can't see how debilitating it is, which brings (wrongly) guilt. Because- have we tricked ourselves about how bad it feels? Could I manage work? Can I just grin and bear it? No. just because others can't see it doesn't meant that you should then ignore it. Be kind to yourself, you wouldn't go on a run with a broken foot, listen to your body without guilt, it is not indulgence, this is our reality. And that is OK. As long as your family, employers and doctors know the truth then let it be as visable or invisable as you wish. I make it 'visable' by giving it a real presence in my life and a large part of my identity. But there are situations when I do just want to be normal.
It is endless. It does not, like my clever little leg, self help. Infact it does the oposite. It self distructs. And that is hard. Psycologically, I feel so so good and weridly proud of myself for the way my body has fixed itself (with the help of various surgons and metal pins).
And the progress is cathartic.
There is a begining, middle and an end. Like keeping the finish line in mind whilst you run the race. And that makes it so much easier to accept, there is something to work towards and in terms of life span, it is only a spec of time, something to work towards. It is heartbreaking when your body doesn't run as it should, when it malfunctios and betrays you. I remember when I was younger even crying to my mum that my body was putting me in the pain, and I couldn't stop it. It is a very strange and hurtful notion. Furtermore, the future is onomouse. I don't know how many operations I will have, I don't know whether or how I will be able to concive children, I don't know whether I will have a hyisterectomy at 35 or whether I wont have to have one at all, I dont know whether there are days where I will not have pain or whether the pain is only going to get worse. The unknown is agony. We can't have a finish line in sight to keep us going because we have no idea where it is. And on top of we can't se it. We're knocked out during the operation and we can't see through to the soft tissue in our stomachs. Again, it is invisable.
And finally, I can talk freely, openly and without fear of an awkward reception about braking bones. The taboo's surrounding endo is yet another form of fustraition, enforced shame.
"Oh yoou have a hospital apointment today? What for?"
"Oh just an x-ray and check up" then they tell you a story about their cousin's dogs baby sitter who broke their arm playing frisby golf and knows someone who...
Is very different to:
"Oh yoou have a hospital apointment today? What for?"
"Oh just a hysteroscopy"
Scilence. Que tumble weed.
I am aware that I have essentially highlighted sad stuff. But actually by dismanteling what is so unfair and upsetting about endometriosis, I now understand how I feel, and why. And I understand why it can feel so hard. And that when I am upset, it is justified and it isn't just a little pitty party i've thrown for one. It makes sense that sometimes I am just done, or angry about the peace it takes from my life.
But I do feel kinda liberated. Because I am not crazy, its like the relife of finally being dyagnosed. My accident taught me that I do not have a low pain threshold, but actually a very, very high one. And that is kind of symbolic for the rest.
Sometimes we just need to take a step back, truly assess the situation and realise that we are frickin' Rock Stars. And that is OK too.
For everyone going to the 'World Wide Endo March' In London or around the world, have an amazing day, I will be thinking of you whilst I am on my 30 coach jounry to spain.... yeck. So, so sad that I cannot make it but do us all proud, raise some awareness and make a stance!
All my love,
Al XXX
I have been meaning to write this blog for a while however I have been having trouble formulating exactly how I feel. I want this notion to be clear and articulate. No pressure lexi...
I am finally off crutches and although I still cannot physically exceed walking (if a man was running as me with a knife I would honestly be screwed, I couldn't run even if I wanted to- which feels weird). Walking is giving me less pain each day and the swelling is slowly starting to subside. And it is such a novel, lovely feeling to be able to see the change and development- that there is positive development at all. A very definite beginning and a clear finish line.
Incase you didn't know, I had a very nasty rugby accident on the 3rd of December, my ankle was dislocated with a shattered socket, ball and total and patrial breaks up my leg. I am finally off crutches and getting back to normality.
By compairing my accident with my endo has made me realise a few things. It has, in some ways, been a blessing breaking my leg. It has enabled me to understand, seperate and define what makes endo so difficult. And you know what, this defining apifany was very empowering, and I would like to share it with you.
The first one is not revolutionary. Endometriosis is difficult because it is a totally invisable disease. This is both a blessing and a curse. Its a blessing when we do not want a fuss making, want to fit in and be 'normal' (whatever that is, last night I made fun with a 70 year old drag queen who had just had a hip operation). But that makes it hard for people, including doctors, to treat sympoms as seriously as they need to be, and understand how deblilitating it is. People are always so suprised and shocked if I explain about my condition, because they aren't there when it is bad and if its mild I am a super ninja at glossing over it. Cool as a Pesky Courgette. It makes things difficult and fustraiting because you can't see how debilitating it is, which brings (wrongly) guilt. Because- have we tricked ourselves about how bad it feels? Could I manage work? Can I just grin and bear it? No. just because others can't see it doesn't meant that you should then ignore it. Be kind to yourself, you wouldn't go on a run with a broken foot, listen to your body without guilt, it is not indulgence, this is our reality. And that is OK. As long as your family, employers and doctors know the truth then let it be as visable or invisable as you wish. I make it 'visable' by giving it a real presence in my life and a large part of my identity. But there are situations when I do just want to be normal.
It is endless. It does not, like my clever little leg, self help. Infact it does the oposite. It self distructs. And that is hard. Psycologically, I feel so so good and weridly proud of myself for the way my body has fixed itself (with the help of various surgons and metal pins).
And the progress is cathartic.
There is a begining, middle and an end. Like keeping the finish line in mind whilst you run the race. And that makes it so much easier to accept, there is something to work towards and in terms of life span, it is only a spec of time, something to work towards. It is heartbreaking when your body doesn't run as it should, when it malfunctios and betrays you. I remember when I was younger even crying to my mum that my body was putting me in the pain, and I couldn't stop it. It is a very strange and hurtful notion. Furtermore, the future is onomouse. I don't know how many operations I will have, I don't know whether or how I will be able to concive children, I don't know whether I will have a hyisterectomy at 35 or whether I wont have to have one at all, I dont know whether there are days where I will not have pain or whether the pain is only going to get worse. The unknown is agony. We can't have a finish line in sight to keep us going because we have no idea where it is. And on top of we can't se it. We're knocked out during the operation and we can't see through to the soft tissue in our stomachs. Again, it is invisable.
And finally, I can talk freely, openly and without fear of an awkward reception about braking bones. The taboo's surrounding endo is yet another form of fustraition, enforced shame.
"Oh yoou have a hospital apointment today? What for?"
"Oh just an x-ray and check up" then they tell you a story about their cousin's dogs baby sitter who broke their arm playing frisby golf and knows someone who...
Is very different to:
"Oh yoou have a hospital apointment today? What for?"
"Oh just a hysteroscopy"
Scilence. Que tumble weed.
I am aware that I have essentially highlighted sad stuff. But actually by dismanteling what is so unfair and upsetting about endometriosis, I now understand how I feel, and why. And I understand why it can feel so hard. And that when I am upset, it is justified and it isn't just a little pitty party i've thrown for one. It makes sense that sometimes I am just done, or angry about the peace it takes from my life.
But I do feel kinda liberated. Because I am not crazy, its like the relife of finally being dyagnosed. My accident taught me that I do not have a low pain threshold, but actually a very, very high one. And that is kind of symbolic for the rest.
Sometimes we just need to take a step back, truly assess the situation and realise that we are frickin' Rock Stars. And that is OK too.
For everyone going to the 'World Wide Endo March' In London or around the world, have an amazing day, I will be thinking of you whilst I am on my 30 coach jounry to spain.... yeck. So, so sad that I cannot make it but do us all proud, raise some awareness and make a stance!
All my love,
Al XXX
Tuesday 3 February 2015
Day 365, My One Year Anniversary
Endo 365
One year today, on the third of February, I had laparoscopic surgery in the hope of lightening the burden of my endometriosis; enabling me to fly off to university. It was not an exact science; ‘x’ does not always lead to ‘y’ with endo, the outcome of the operation would be an unknown box; it could be a present, but it could be a bomb.
I prepared myself the only way I know how to; going on holiday and focusing on the positives. I was very worried that there would be no improvement, and with this op as the last resort that prospect was beyond daunting. But I tried not to think about that because, well, it wasn't time to worry yet.
I had the procedure and enjoyed the showers of flowers, chocolate, and love. I felt very blessed and the road to recovery began beautifully. Three months down the line with just the Marina Coil to keep my Whoremoans at bay (opposed to GNrH which, and I quote; made my ovaries alike to ‘Fort Knox’) I was struggling to get back to my previous lifestyle; balancing 3 main jobs and lots of bits on the side, as well as having a life. The daily pain was excruciating and although I tried not to shout about it on my blog because I wished not to dishearten people, I was guest at my own pity party feeling like there was no hope for rest bite in my future. I was also panicking about how I was going to cope living with strangers in this much pain without my Momma. Although 97% of the time I am mentally on top of my suicidal tummy, I have days where I can completely empathise and agree with those who are at their breaking point with it all. I went to see my consultant who essentially said there was nothing more he could do, if I am still getting pain after 6 month then to go on the pill in conjunction with the coil.I felt helpless and desperate.
So I got busy saving myself; I tried reiki and acupuncture and luckily for me, acupuncture had a dramatic impact- I still have it weekly to this day. Without realising, if I go a month without it, my pain levels increase noticeably. This was the beginning of my long term, sustainable solution which I will come to shortly.
When you have had over 200 consultations with over 20 different specialists (not just gynaecologists) you tend to build for yourself an informed picture of where you stand and the options and choices that you have. The only thing that has really worked medically for me is GNrH, however that is not a long term solution and is probably why I am currently on crutches nursing a broken leg and shattered ankle (35 pins and plates I’ll have you know). Operations have only done so much for me, whatever causes the endo to grow in the first place is still strong with my fertile age and little medication seems to impede it. So you explore every avenue; the gynaecologist (both those in favour of medication and those in favour of surgery), the pain psychologists, the pain specialists, the gastroenterologists (and endure the dignity of an endoscopy), the urologists, the dieticians and so on. Through crossing the ‘t’s and dotting the ‘i’s I consider myself an expert on my particular condition. I know that no medication alone allowed me an independent lifestyle so I had an operation to excise the endometriosis and get me back to neutral. For me, the next port of call was to try the marina coil as a long term solution. It was not working as we hoped so we doubled it with the pill back to back. I started looking at alternative treatments and found one that worked. I follow I diet that minimises additional pain; I drink lots of water and get a good 8 hour sleep most nights.
Through time and trial and error, I have maximised (or minimised rather) my potential for painless peace. I still have pain every day and rarely have a day without painkillers, but now we have a sustainable, long term solution and I know where I stand. For the first time I am in control and ahead of the game. This is the best it can get and I accept that because I know that I have explored every avenue available to me. I mean we used to import visanne for heaven’s sake! I could get very cross about still being in pain, I let myself cry about it when I am laid out on morphine, but the fact that I am able to go to university and live away from home, the fact that I am able to wake up every morning with two arms and two legs (no jokes, please) and choice and opportunity, is a fair enough compromise. No one feels as though they have it easy, every life has challenges and difficulties, this is one of mine. There are worse things and there are better. But this is mine.
Reflecting on my 'Endo 365 calendar year' is a big task. I have had an epic year and a lot has changed. Within this year I have travelled to a lot of beautiful places and visited distant family that I love dearly, I enhanced my CV this year and gained valuable life skills that will aid me post-graduation, I have fallen in love, Family members got sick and better again, I started a new chapter at university, I write this blog which keep my sanity (I don’t post all of them ! ), I have become a trustee for Endometriosis UK which gives me real purpose, I quite shockingly mangled by lower leg and spent the most testing 11 days in hospital with doubly incontinent women and their amazing nurses.
What does year ii365 hold for me?
Rehabilitation for my leg and re-learning to walk, finishing my first undergraduate academic year (hopefully with a grade I can be pleased with), visiting the cities of Europe, a month volunteering in Uganda building playgrounds, My brothers heavily anticipated AS results (keep your fingers crossed) and my sister’s good health. When you live a big, full life as I do, not everything is good, and there is collateral damage like my leg. I accept that and am just proud and pleased that I am surrounded by so many amazing and supporting people as I am. They’re good fun too, so thank you because even reading this is a form of support and I hope that you may gain a little something from one of my blogs. I know that they are not for everyone and that some women’s lives are so debilitated from endometriosis that me prescribing ‘contextualising suffering’ just doesn't cut the mustard. I know that although it gives me strength and purpose acknowledging that there are people worse off than me and that I actually have it pretty good, that simply makes others feel worse.
Ultimately, I just wish to make the best of the situation and try to polish that turd. It is good fun and there is no harm in trying.
All my love,
Al XXX
Tuesday 27 January 2015
Day 358, Having Your Voice Heard
Endo 365
I have an amazing friend who is currently on her second gapyah studying the bible in Mexico in preparation for a life in helping women who have been exploited or/and fallen into prosititution. And she showed me something that I had taken for granted and never realised before; Hannah's talents lie in what she has to give to individual cases and her beautiful impact on those she meets. She will never cause a big fuss because she is too busy caring. I could not do this like she could because I over commit and get too distracted by shiny things, it's one flaw of many. But Han pointed out that I play a different cog which I had never considered; the importance of making a rumble and getting the injustices noticed.
Politics extends further than just party politics; most sociological issues are political in nature. There is an agenda for progression, however things impend, impose or oppress that progression. And then throw in cultural relativity for a bit of fun. I don't know whether it is because I was bullied in my childhood, or that growing up in the West we have an innate sense of justice, however I feel passionately at the core of my morals for the need of social justice; for any person or groups of people who are discriminated against. I feel an often overpowering sense of frustration and compulsion to do whatever is within my power to correct what I know and feel to be wrong. Perhaps it is naivety and immaturity yet to be scorned by the world. A wise man once said that; 'People say a pessimist is an optimist with more data. But they are wrong; I say that an optimist is a pessimist with even more data.' Its kind of funny how many things in like come full circle. It certainly can come across as me being obnoxious for my siblings at times who get fed up with my crushing alpha sense of fairness. But the intention is always innate and burning. Sometimes it keeps me awake at night and I cannot stop it and I will not apologise for it.
Even writing this has ignited a fire of passion in my tummy because I am struggling to articulate and justify the obligation I feel as a human being to in whatever minuscule way possible, reinstate an equilibrium.
The reason I am telling you this is because whether you're a Hannah or an Alice, there is a way to have your voice heard and tap at that wall of ignorance.
Endometriosis UK and I invite and implore you to sign our petition being sent to David Cameron highlighting the need for quicker diagnosis time and a greater education within the medical profession. Lets face it, if you have invested enough of your time to read up to this point, it would be counterproductive not to sign here . it is completely free!
Today you can have your voice heard and campaign in the comfort of your home, make an impact, cause a ripple of influence, end the silence.
Now it is your time to be politically precocious and pass this on, put it on Facebook, twitter and send it around your emailing list.
Things do not change on their own. Be part of the cause and effect.
Lots of Love,
Allie XXX
P.S reliving 'Crying in Public Toilets with Happiness' again and I am not in hospital and I am not dependant on anyone else yet. Pain levels are as good as spirit. Now sign the petition and pass it on.
I have an amazing friend who is currently on her second gapyah studying the bible in Mexico in preparation for a life in helping women who have been exploited or/and fallen into prosititution. And she showed me something that I had taken for granted and never realised before; Hannah's talents lie in what she has to give to individual cases and her beautiful impact on those she meets. She will never cause a big fuss because she is too busy caring. I could not do this like she could because I over commit and get too distracted by shiny things, it's one flaw of many. But Han pointed out that I play a different cog which I had never considered; the importance of making a rumble and getting the injustices noticed.
Politics extends further than just party politics; most sociological issues are political in nature. There is an agenda for progression, however things impend, impose or oppress that progression. And then throw in cultural relativity for a bit of fun. I don't know whether it is because I was bullied in my childhood, or that growing up in the West we have an innate sense of justice, however I feel passionately at the core of my morals for the need of social justice; for any person or groups of people who are discriminated against. I feel an often overpowering sense of frustration and compulsion to do whatever is within my power to correct what I know and feel to be wrong. Perhaps it is naivety and immaturity yet to be scorned by the world. A wise man once said that; 'People say a pessimist is an optimist with more data. But they are wrong; I say that an optimist is a pessimist with even more data.' Its kind of funny how many things in like come full circle. It certainly can come across as me being obnoxious for my siblings at times who get fed up with my crushing alpha sense of fairness. But the intention is always innate and burning. Sometimes it keeps me awake at night and I cannot stop it and I will not apologise for it.
Even writing this has ignited a fire of passion in my tummy because I am struggling to articulate and justify the obligation I feel as a human being to in whatever minuscule way possible, reinstate an equilibrium.
The reason I am telling you this is because whether you're a Hannah or an Alice, there is a way to have your voice heard and tap at that wall of ignorance.
Endometriosis UK and I invite and implore you to sign our petition being sent to David Cameron highlighting the need for quicker diagnosis time and a greater education within the medical profession. Lets face it, if you have invested enough of your time to read up to this point, it would be counterproductive not to sign here . it is completely free!
Today you can have your voice heard and campaign in the comfort of your home, make an impact, cause a ripple of influence, end the silence.
Now it is your time to be politically precocious and pass this on, put it on Facebook, twitter and send it around your emailing list.
Things do not change on their own. Be part of the cause and effect.
Lots of Love,
Allie XXX
P.S reliving 'Crying in Public Toilets with Happiness' again and I am not in hospital and I am not dependant on anyone else yet. Pain levels are as good as spirit. Now sign the petition and pass it on.
Thursday 18 December 2014
Day 320, Allie's Recovery Top Tips
'What you do today is important, because you are exchanging a day of your life for it.'
Now that is all good and well, but sometimes life take an unexpected turn and the important things now have a different context and adhere to a different list of priorities.
For me in the past, I have had at least prior warning of their comings- but as I said in my last blog; the rug can be pulled at any time and things can change without a chance to prepare. And this can happen all the time with Endo, so here is Allies guide to some form of sanity when life hits a sudden stasis of frustrating stillness.
This is not an exact science or anything revolutionary, just what works for me.
Anybody who knows me well knows that my film education is practically non existent, which is ironic as everyone I am close to has a pretty incredible (and I really mean the essence of that word) film résumé. I am a self confessed book worm and I have always taken the paper over the plastic. But I have deffinatlety grown to appreciate the art and joy to be found in a good film. So having somewhere you can rent them from or friends who are willing to lend you a bundle is a good start. Also, maybe start building a collection of your own in lieu for if you suddenly inherit a chunk of time. Netflix is also an excellent way of filling time, it is £5.99 a month and has more films and box sets than you can shake a stick at. My problem is that after two years with four ops I have now almost exhausted it! So if you have any fantastic movie suggestions for me please comment below or email me at alice.smith@marrio ttfarm.co.uk
My second port of call is obviously reading. I am not going to dictate novels though because I know they aren't for everyone. But keeping your mind ticking is very, very important. It keeps you strong and keeps the mopes away. Whatever interests you, read blogs, journals, interviews, articles about that subject. My boyfriend is not a book worm, but you genuinely, will not find a better read person in the world of cars. His knowledge is so vast from what he is constantly reading that I think he could go into the industry tomorrow and write successfully. And that is from somebody who would never call themselves a reader. It still counts even if it is not Wolfe, even if it is about photography or the best bakes you can get lost in that literary sphere. Also, I find this process rather productive in its own means which always boost moral even when one is horizontal on le settee. I always try and get some form of educational spin when I have time out; earlier this year I informed myself on greek methology and I am passionate about rewiring my brain slightly to be less arty and a little more practical with sciences. I will start in the middle with the romantic astrology.
I have never been one of those people who spends hour on youtube as, to be honest, after a while I get bored. However it is always handy for a giggle or a cool story. If you read my blog the chances are you will like these three videos (courtesy of Megan, thank you moo): https://www.youtube.com/watch?v=Awf45u6zrP0 https://www.youtube.com/watch?v=HfHV4-N2LxQ&index=54&list=FL9LCOfcclHJ9K2beFSpxjHA
Likewise, if you have any good clips you'd like to share comment or email!
Part of the hardest think about this blooming leg is that I feel fine, I really can tolerate the pain, but not being able to wash myself or make myself a cup of tea is driving me insane. I am struggling to fall asleep at night because I am doing nothing, and my appetite has dramatically decreased because I can only walk as far as anyone will let me before they bash me down into a wheelchair. But yesterday I made 60 mince pies and I am trying to do as many Pilates style exercises as I am physically capable. With recovery in the past I have always been able bodied but tired. It is important you get as much sleep as possible because it aids a speedy recovery. Also who doesn't like little cat naps? Rest when you need to rest, but when you are able keep a little active.
Now when I started having time out alllll those years ago I occupied myself reading lots of stereotypical motivational books and quotations in order to start adding some solid, positive functions to my life, making the best out of my diagnosis and daily situation. I have read more than enough and to by honest, anything I read now just feels like it has been regurgitated and is already already second nature, which is actually a good thing. I cannot believe I am admitting this but I do follow all those soppy and clichéd groups on twitter and Instagram for the occasional one that alights some imagination. If you haven't, grit your teeth and maybe play it a bit America, dig out those cringy guilty pleasure pearls that you received from your hippy aunt at Christmas. It is possible to take ideas and regurgitate them practically into your life and situation. One of the best books I have read on the subject was recommended to me by an old boss (at the grand age of 19) is called 'The Seven Habits of Highly Effective People' by Stephen Covey, or the bite size version written by his son for teens but is as relevant for everyone if you're on a tight timescale 'The Seven Habits of Highly Effective Teens' 'http://www.amazon.co.uk/s/ref=nb_sb_ss_i_0_9?url=search-alias%3Daps&field-keywords=seven+habits+of+highly+effective+people&sprefix=seven+hab%2Caps%2C300 Its a good place to start your readings.
Visitors. Now this may vary depending on how much of an introvert of extrovert you are. I am unashamedly an extrovert. And if a day goes by where I do not see an external soul or get out even for 5 minutes, it greatly affects me. It never amazes me how much my mood can be lifted by a natter with a fresh person and a giggle over tea and biscuits. Sometimes I get a bit upset if I (in my needy ways) if I feel like people flake when I have looked forward to seeing them all day, or if people haven't even arranged to visit. But recently I have began to think that it actually starts with me; people cannot mind read and intuitively know that I need their friendship just because they saw a Facebook status about my latest escapade. Give the important people a ring, not a text, explain what has happened and that you would love to see them. With my experience this etches out any chance of people letting you down because you've put them into the picture. If you are reading this as a friend someone, speaking personally, visitors are priceless. I'd much rather an hour of your precious time than a bunch of passing flowers.
And to all the wonderful people in my life who are so generous with their time, thank you endlessly, I'd rather see you than pretty much anything else.
So 'What you do today is important, because you are exchanging a day of your life for it.' But just because you are not conquering everest does not mean that you cannot make it fulfilling and worthwhile.
All my love, I hope you enjoy a beautiful, full Christmas and the best of look for the New Year,
Lots of love,
Al XXX
Saturday 6 December 2014
Day 308, Getting legless at Christmas
Endo 365
Lots of love,
So this is a blog that I did not see coming, and it has strangely (very, very strangely), been quite refreshing.
Thats the angle I am spinning to myself; refreshing. Bear this in mind for what you are about to read. I am OK- Okay?
I have a few blogs written, edited and ready to go but non of them felt right and whilst we are hurtling towards Christmas, it felt apt to write about endo in context of my new university lifestyle. And for the first time ever, I just couldn't get it out, mainly because I was not in the best place with it. I have found managing my pain on my own and keeping up with usual student antics hard and I couldn't quite sell myself the happy sale yet.
And so whilst Alice briefly loses her perspective and seeming undying positivity (I blame the changing weather) life brings her back down with a kick.
A real big kick.
More like a Elephant stampede come to think about it.
So I have grown up in a household with a passion for Rugby and at for a few seasons we were old/young enough to all have Leicester Tigers season tickets. I played when I was younger, and when coming to university it was one of my aims to join the girls team for the fitness and crack (crack being a good time). And so I did.
On Wednesday the 3rd of December I played in a match against Liverpool... and only 20 mins into the game I was railroaded by what can only be described as the titanic on protein shakes.
Essentially she ran stealthily away, along with all the other girls screaming, as we realised the loud crack was assosiated with my foot, which was set at a right angle to my knee.
Anyway, avoiding gorey details, and it being me who as every keeps saying 'doesn't do things by halves' (btw thanks guys, I take that as a complement) I have one of the worst and most rarely dislocated ankle the surgeons have ever seen. Well done Al, you've done it again gal...
And considering the severity of my ankle, I didn't cry when it happened and I can bear the pain now. Which has been amazing for my sanity because after a while of daily endo agony... you begin to question whether you are crazy and are making it up. Well, you're not. And it is amazing to have that clarified.
So whilst we are waiting for the paramedics people were getting a bit freaked out that I was not screaming. And that is because I know that if start to panic and scream it perpetuates pain, I was focusing on keeping mentally on top of it. That's brilliant practice for pain attacks FYI...
And I did. Until I realised that I was meant to be going to a Ball that night, and then I really started to mourn when I remembered about my University Skiing trip the following week.
Do not get me wrong, this situation is so frustrating and so bloody unfair, I have so many amazing plans for the festive period, and I was going to work to earn some dollahh (so that I can eat at university) and the thought of not being able to return to my active lifestyle is a killer.
I had a mini op on the Thursday where they manipulated it back into place but they didn't pin me back together because it was too swollen. So instead I am stuck in hospital for two weeks to wait for the swelling to go and then to have my op.
I threw an absolute paddy at this; two weeks of literally lying in bed (except for showering and peeing) on a hospital ward. I was going to go mad. Done. You may as well let me jump out of the window now. I could feel it like an infection spreading. Especially as the ward I am on is for hip fracture patience, who largely seem to be lacking some mental faculties. Fair play to Olive though, she is 92 and sharper than most of my brothers mates.
But then when I got over myself, I remembered this is the adult world and things very rarely play out exactly how you wish them to, and things can happen at any moment to tip your world on its head and create a whole new list of priorities and perspective for you. And as my mother rightly said; better here and now than doing it whilst skiing in France or skiing off a mountain, which I could well have done. I haven't had my foot amputated, she didn't break my back or my neck- my situation could deffinatly be worse.
The physios told me that I am unable to go back to my halls as I live up four flights of stiars and there is no lift. SO I start to panic as my january exams start on the 12th and I will deffinatly still be in my cast then and it is too far to commute... The only other option would be for me to sit them in august instead... which would put the kibosh on my trip to Uganda. This made me cry and panic because I felt like I was being backed into a corner by something that is already such an inconvenience. So I have decide that this is not going to stop me I am going to have to work around it.
The physios told me that I am unable to go back to my halls as I live up four flights of stiars and there is no lift. SO I start to panic as my january exams start on the 12th and I will deffinatly still be in my cast then and it is too far to commute... The only other option would be for me to sit them in august instead... which would put the kibosh on my trip to Uganda. This made me cry and panic because I felt like I was being backed into a corner by something that is already such an inconvenience. So I have decide that this is not going to stop me I am going to have to work around it.
This is one of those things that just happened, and I just have to fine away to let it become my new reality.
I could sit here and indulge myself in angrily asking myself 'Why did you play rugby to close to your skiing trip?' or 'Why didn't you pass the ball?'
The answer is simple; I didn't realise this would be the outcome. So why punish myself? Begrudging this time is not going to make it easier, so I am surrendering to the surprise bed rest, doing my exercises often and giving myself the best chance and a nice christmas hopefully out of hospital. And why shouldn't it be? All my friends and family are healthy and alive. I am just currently down the function of a leg. Which is great because everyone has to taxi me around and I can be drunk 24/7!
Sometimes with endo it can feel like you are carrying the biggest burden in the world. And we are indeed, carrying a very complex and nasty albatross, but it is important to remember it can get worse at any moment and sometimes you'll want those old problems back. So always bear in mind that the rug can go at any moment, no matter how dark it seems, appreciate what you have now. Now of course I hope this does not happen, however it is a humbling thought to keep in mind.
I do not feel like this for 100% of my waking hours, there are moments when it hits me that I am stuck in this ward with lovely, but slightly gaga doubly incontinant 90 year olds. And although it sounds silly, I am finding sanity in their innocence.
So I am okay, and for the moment, mentally stronger from all of this. It has been such a massive boost for me that the endo pain I feel is as bad as I think and that I am not going mad. It sucks that I cant do that stuff but there is no peace in thinking about what might have been. I am kind of looking forward to not overcommitting myself to a hundred people and running round like a blueassedfly. It will be nice to for the first time have a really laid back christmas- plus my family deserve my time. I wont be able to drive which will get frustrating for everyone involved but it is not a Devine right so i'll have to get used to it.
As I am getting older I am learning that it is really good for your not to always get what you want all the time. And I am not talking material goods; I'm talking about the good things in life that fall into our favour.
Plus, it means we're just stacking that good Karma.
Have a good christmas, I will be constantly legless!
I am currently in Liverpool because thats where the game was, which is a real pain because I am not with friends and family at home, nor am I in Manchester. So thank you for all the calls, texts and emails, they are keeping me sain and I shall see you sooooon,
I am currently in Liverpool because thats where the game was, which is a real pain because I am not with friends and family at home, nor am I in Manchester. So thank you for all the calls, texts and emails, they are keeping me sain and I shall see you sooooon,
Lots of love,
Al XXX
Monday 27 October 2014
Day 266, Counting Sheep and Tramadol...
Endo 365
This blog is a little different- it's not about what is working well for me... Rather what I need to do. A pledge to myself if you like. So I am going to get off my 'Do's and Don't's' pedestal and lay out all my imperfections for you.
I have four rules for myself to lessen Endo's effects which (being naturally predisposed to rebelling) I don't follow as well strictly as I would want my best friend or sister to. These 'rules' are:
1) Look after my emotional health, keep me strong and happy- why do you think I go on so many holidays? I draw a lot of strength from them. I am currently writing this blog in Venice looking out onto the grand canal so I am doing well on this front currently. I also make time for myself at uni for coffee alone and doing some exploring in a new place. I don't know why but it's gooood for the soul, especially if it involves water or bargains. And baths. Baths are important for me.
2) FODMAPS Diet- this contrary to my worries about university lifestyle has been a real success... Because the only food I can eat is that which I buy... Which is only food that I can eat. Don't you love positive cycles? First time for everything!
3) Exercise. Between the gym and rugby training (yeah you read right) I'm exercising 4/5 times a week which is perfecto for me. And making a difference to the pain. However the irony is that sometimes we are in too much pain or too tired to do this, and do not feel bad for the days you can only exersise the horizontal position; however when I do not want to go or feel like going, is when I benefit most from the enforphins afterwards.
4) Sleep. Ah sleep. You illusive tease. You bitter sweet essential. I am being very naughty at the moment and burning the candle at both ends and I may as well be eating a tub of gluten infused dairy having not left my sofa for days thinking about how awful my life is. This is what I need to sort out. And ironically, with some treatments such as GNrH, insomnia becomes a side effect. This is why it is good to be as diciplined and in a routine...
Due to my lecture/ seminar times/ working in an office on the days off I don't have my lectures/ seminars (why can't I just be normal for once?) I get no Chance to catch up on sleep, contrary to the images supposed of students who just lie in bed all day watching netflicks and eating pot noodles drinking lambrini as it is officially one-of-your-five-a-day-because-it's-grape-juice-k?
Right now I can hear my mother saying 'why don't you just go to bed earlier?'
Well mother, because I'm a student now, and have shit to do. For example, socialise. Or catch up on Downton. Or spend time with my flat. Or go dance. Or work. Or socialise. And then because I do this, I get fatigued.
Now I realise this may sound like a moany blog which is everything my blog is not meant to be. So bare with me oh doubting Thomooose's.
The reason sleep helps my pain (and most peoples) is because body then has a stronger constitution to battle the pain. Think about it; If you're tired and run down you're always more venrable to colds (I've had mine 7 weeks and counting now kinda proving my point). It's the same with pain. Being tired doesn't MAKE pain, however my body feels it more and can't shake it off the same.
And then because of the pain I can't sleep. Or I take big pills which take away the pain but give me a half hearted nights sleep with weeeeeiiirddd dreams.
But this really is pitiless ladies and gentlemen because it is within my power to change this. And I will, because I know it helps, and it is a god send of an easy solution. But then there is that little voice that does not want my endo to stop me from enjoying university nights out, or spending time with my friends and gets the great idea that not sleeping is two fingers up at endo. But in this fram of mind, I am too stupid and stubourn to remember that two fingers up at my endo is indeed, two fingers up at myself. Useless. Cutting off your nose to spite your face my girl.
So hear is the middle ground, Ima make myself a deal:
Listen to your body and give yourself the best chance. Know if you're having a late night and busy day to factor in a lazy night, be it in bed catching up with MIC or having the gals over for a pot of earl grey and chocolate.
It is all apart of the thing I and most women with endo are not very good at doing: beingg kind to yourself and giving yourself permition to slow down; knowing you limits.
It is infuriating and hard to swallow that we have limits influenced by our endo, however ultimately everyone has limits, and if we look after ourselves properly, then the limits stretch, but first we must adhere to them.
So this is me essentially telling you not what you can do, but what I should do and need to do, and hopefully get you thinking about what enhanses your quality of life too.
Be proactive, find out what works, then stick to it with as much normality as possible.
On a brighter note, Venice is very special and refreshingly different. I fly home tomorrow and the sight of a car could well break my heart a little. I love being on the water, however ended up having to talk myself out of a big ass fine today on the Vapperetto. I had lost my ticket and unfortunatley our boat was unfortunate enough to have a spot check inspection of tickets... I panicked and started speaking unintelligible made up gobbeldygoop with a few sporadic english words to add to the confusion, giving my biggest puppy dog eyes and playing as innocent and dumb as someone as evil as I can do. To top it off whilst he was calling his manager, I kicked myself in the shins to make my eyes water and then poof, 90 euro fine diminishes into a 7 euro ticket and it has all been a good ruse. Why thank you Karma, I now forgive whoever backed into my car and drove off.
There is an interactive architect/ modern art exhibition in the Giardini; at Hungry's exhibition you wrote on pegs and left them, like a temporary legacy. This is mine;
Sweet Dreams,
AL XXXX
Monday 20 October 2014
Day 259, Crying in Public Toilets With Happiness...
Endo 365
I have been in many a weird and wonderful situation, this one, however, this one is up there.
The point to this blog is a bloody on however cringily poignant for the everyday person.
As you may know, I had an operation in February excising the endometrium in my naughty tummy. At the same time I had the Marina Coil implanted which has been okay, but I spotted everyday for six months and had a pain attack ever 5 days accompanied with copious amounts of tramadol (weeeeirddd dreams), morphine and bed rest. All in all a fairly unproductive inconvenience for me. So I conceded and took joint treatment (as advised) and am taking the mini pill in-conjunction.
Now this has worked fairly well; no brake through bleeds and far less frequent pain attacks. Amazing. Perfectly timed for once as I was starting university.
About three weeks in my body was screaming at me that I needed a break from all the WhoreMoans and so I stopped taking the pill for one week and something magical happend.
My first proper period in five years.
It was oddly liberating, like re-starting puberty and I felt the initial smugness I remember ironically, so long ago.
And what was particularly amazing for me (minus the fatigue and Whoreiffic WhoreMoanal swings) was that I did not end up in hospital... and on top of that... I had next to no pain.
Me, next to NO pain.
I very very very rarely surprise myself health-wise. You know what it is like... We know instinctively how our body is going to respond so certain things that the doctors suggest. We know what will work and what will not. We know within minutes whether the pain will pass or whether its going to be a biggie.
We Alice-the-expert-know-it-all did not anticipate this.
And do you know what, for the first time ever; it felt so bloody good being wrong. Liberating even.
Tom and mum take not of those last two sentences as they will never happen again.
And even though I have been in daily agony since, do you know what it taught me? It is hard to type this with out it bring cringing because this word is so over used, I have never felt it in such a pure sense until I was indeed, crying with happiness in my university toilets; Hope. Thats right, Capitalised Hope.
This beautiful realisation that my body can in fact, suprise me in a good way is what reduced me to happy tears. I can say I cannot remember whether it has ever done that, but I hope this is not the last time.
Thankfully my endo has been caught early enough that I should be able to have children, however I have come to the terms with the fact that my side effect are so extreme I felt I absolutely knew I would not be able to naturally cycle and conceive the 'normal way'. I had accepted I would have to conceive via IVF/ have a horrible time of it irregardless.
However now for the first time, who knows, maybe I'll be proved wrong, again. I Hope so.
The Hope I have been given is lovely, it is not a lot but I am going to savour it and so should you, wherever you find it.
And that, Ladies and Gentlemen, is how I ended up awkwardly crying in public toilets with happiness.
And that, Ladies and Gentlemen, is how I ended up awkwardly crying in public toilets with happiness.
Last weekend I attended the Endometriosis UK Information day which was a fantastic day and I heard some inspirational stories and some which brought tears to my eyes.
But it also reminded me that: Endo is an asshole. It can be a life wrecker and it has the potential to break you. Do not let it. Search for the good and although it is so very unfair, and we have days where we cry and are angry, this is our one life cannot be anything but with endometriosis so make the most of it and search for the positives and hope because life is much brighter and better with them than without.
It doesn't matter who you are and how you deal with your endo, if you are living with it you're an amazing woman of strength, keep going and be an example to yourself.
Over and out,
The Cheese Master XXXXXX
p.s email me if you need alice.smith@marriottfarm.co.uk
Friday 19 September 2014
Day 228, Cherry Picking
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
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
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
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