Sunday 26 July 2015

Day ii174, Invisibility as a Super Power

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

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

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.