Saturday 21 June 2014

Day 149, It's My Birthday- A Midsummer Night's Dream

Endo 365

You’ll be pleased to know I am keeping this a short and sweet as possible as the Prosecco is crying for me, and I do not like to leave people (yes, I have just personified Prosecco- it’s my birthday donchaknow) waiting.

Due to having earnt my own money from the age of 12, generally speaking, if I want something, I buy it for myself. And I am proud of that. I am by no means independent but I have never lived off birthday and Christmas money if you catch my drift. So coming up to this birthday I only really wanted (a flight to America... Hint hint, pleasee) and a goat and chicken to be sent to Africa. I have since read some scary articles and have decided against it. So it doesn't look like I will be getting either. 

As you may know, I am the Young Ambassador For the  charity Endometriosis UK. Working with this charity has been game changing for me. Seeing the amazing things it manages to do and the incredible impact it has on women’s lives and their family's has been moving. Unfortunately due to the nature of this disease, youknow, being... bloody’n’all, it is pretty darn hard to fund raise for.  

My Birthday wish is simple:

If you have read any of my blogs in the past and you have learnt something, or you have felt empowered, or it gave you comfort knowing you are not alone, or even if it made you smile, as a token of gratitude, please make a donation to Endometriosis UK, no matter how big or small http://endometriosis-uk.org/donate OR you can text ‘Endo14’ followed by the amount to 70070 (I feel like a presenter on children in need).

I volunteer up to five hours into one blog, and I love love love doing it. It is like therapy for me. However if you do appreciate it (hallelujah), then all I ask for in return is a little birthday present donation for me. Or why not even become a member? http://endometriosis-uk.org/become-member

The resourcefulness of this charity never fails to astound me, however as it is not government funded, it really does rely on us.

It’s Saturday, have a G&T for me,

Thank you to everyone who continues to read this blog, and all you beauts who email me,

All my love,



The Birthdaaaaaay Gallyyyy.

XXX 

Thursday 19 June 2014

Day ii65, Giving Blood and Setting Targets

Endo 365

Do not fear this is not going to be some ‘Give-us-all-your-blood-because- we-are-about-to emotionally-manipulate-you’ radio advert (they get me every time).

No no, this is all about small miracles and having incentives (or carrots) to pedal towards.

Not following the link? Understandable, let me explain.

Following my first operation (when I got my diagnosis) I felt a very strong duty to aid the health service in whichever civilian way I could- mainly for all the little dots who were seriously ill around me and practically lived there, on our ward.

The very fact that a child born without arteries leading back to his heart, gets a free and comprehensive health care allowing him to live until his twenties instead of days is just the most incredible thing. This probably won’t come as a surprise to you, but every so often (usually when I am on a long drive) I end up having a real think about the National Health Service as an institution that serves our country, and I cry. We are so so lucky to be born into a country with the facility for free point of care health service. And I know I can be one of the first people to moan about the NHS and its insufficiency’s, but in its essence, it is brilliant: think about how different ‘Breaking Bad’ would be if it were set over here… just sayin’… we are so lucky to live in a society where a constitution exists with the 7th best health care in the world (above many privet health care nations) where we need not worry about being hit with a huge bill on top of the trauma resulting in us going to hospital, is such a privilege.

 I have family in America and it genuinely astounds them that we do not have to pay (I know we do indirectly through taxes) for medical attention. If, like me, you have always lived in England and you have, like me, been socially conditioned into thinking how inefficient the NHS can be, just for a second, take a step back and actually think about what the NHS actually is.

So, at times I get romantic about the NHS as a socialist haven.
I think that it is because of this that I have always felt it imperative to give blood and do whatever small ripple I can, for something at such little cost to our wellbeing can save another person’s life.

That to me is a no brainer.

However, I have never been allowed to give blood (like many people with endo) because in the time I have been old enough to give blood, my health or medication has not allowed for it. And that made me miserable and felt like rubbing more salt in the wound. I have either been too anaemic or fatigued or on too much medication or post opp’s.

So, for me, the simple, normal, every-woman-every-man task of giving blood has been very high on my agenda and conscience for the last three years. It was something to work toward; something of great weight and importance to me. For me, it is on the same agenda as establishing my business or picking the right university or running a half marathon, even though giving blood is considered an everyday thing.

Except because of my story, history, context, it is so much of a greater thing.

So on the Monday before my birthday I gave blood and it was just so perfectly liberating.

And (probablymaybe because of the whoremoans) I cried. It felt like a victory, a real win. I wouldn’t have been able to do this without my operation because I still would be have been on GNrH.

Endometriosis (or anything you have to battle in life) can short-term limit us, and unfortunately even long-term sometimes.  I do not think I would be half as motivated or positive if I didn’t have anything to strive towards or feel proud for having overcome and still achieved.  Having fixed goals pioneers focus, having goals inspires motivation, having goals creates discipline, having goals builds and sustains a strong, healthy mind. It quantifies and measures the everyday things we achieve without even realizing what a big deal it was to get up and go to word when you don’t feel like it. 

As I stated in my previous blog, endo can induce an helpless, endless frustration because it isn’t like breaking your leg. You can’t take it easy for 4 months and then in a years time you forgot that you even did it. I will feel the repercussions from my endometriosis for the rest of my life because it has sensitized my bowels to about 40 different foods. However by setting goals, the endless nature becomes more manageable.

Set some time aside and get an A3 sheet and loads of coloured pens and just get it all down, then order it realistically. It doesn’t matter whether the goal is climbing Mount Everest or something simple but a sign of achievement to you like attending a full week at school or work, explaining to three people in one day about your endometriosis, or just giving blood.

Once you have your short-term goals nailed, think long term. If you have read other blogs you may know I hate wasted time, having a little list of goals ensures if there is an opportunity, I always have something productive to do or work towards. During recovery I even had things as futile as making a scrapbook from traveling on my list. But it gave me focus and structure. So it doesn’t matter what it is really. It is also very empowering, you are saving yourself piece at a time and not surrendering to the pain.

Success is not necessarily doing big things. It can be doing little things in a great way.

Set achievable, yet desirable goals and make yourself proud.

Be smart and be brave,

AL XXXX




Day 282, We Need YOU!

Endo 365
 
As some of you may be aware, this week is 'National Trustee Week' and as they do every year, The Guardian hold a competition for trustee of the year.
Our very own Carol Pearson has made it very deservingly into the top 5 and we need your vote.
Why vote for Carol? Well, she is certainly one of the most inspirational people I have ever met and I certainly have a lot of time and respect for her, as I do my fellow trustees. It is not for me to tell her story, but endometriosis has definitely changed the course of her life and she acts with such dignity,  strength and grace that you could mistake her for a real life heroine from a Dickens novel. Leeeegit.   Anyway instead of going on like her biggest fan I'll let The Guardian do the talking, here is her bio telling you all you need to know:

                " Carol is a trustee for Endometriosis UK and according to her nominator nothing is too much trouble for Carol - from climbing Snowdon to donning pink knickers. Her campaigning for patient involvement and voice has shaped the charity and empowered people to manage their lifelong and incurable conditions.

Although she is a endometriosis sufferer herself she dedicates so much time and effort to the charity that they say they would not be able to provide the service without her.

Carol is said to be a invaluable advocate for endometriosis sufferers who struggle with benefit and employment traumas and a superb speaker for the charity. Recently, she gave a moving and informative Ted Talk to raise awareness. "


So please vote using your phone, laptops, tablets: http://www.theguardian.com/voluntary-sector-network/poll/2014/nov/08/trustee-of-the-year-award-2014?CMP=twt_gu and pass it around your circles...

We often laugh that the reason we are not on anti-depressants is because of volunteering and I think there is some truth in that. I certainly need the charity far more than it needs me, the knowledge that I might be helping and am giving back is enough to help me sleep at night. So as well as this blog post being a plug for the amazing Carol to win as she so deserves to, if you feel like many of us do like you want to do something, visit the Endo UK website and see what volunteering capacity may suit you; from being trained up on the helpline to hosting a pink pants tea party we need you and I highly recommend its therapeutic benefits. I find it comforting because by actively and positively doing something out of my pain, I am elevating myself from that horrid victim status. It takes time to regroup and have enough of yourself to then give in this capacity so if you aren't up to it yet or simply do not have the energy, do not feel guilty, you have to be in the right frame of mind, maybe you can just plug awareness in your own circles.
Keep tapping at that wall,


Al XXXX

Day 309, Tears, Snot and Mascara

Endo 365

Now anyone that really knows me, knows that in some respects I have a icy
cold heart. Reading is probably my favourite past time, I connect with words
and stories and ideas and metaphors, and English Literature was my absolute
favourite subject at school. However unlike the other bookworms I know, I very rarely cry at books (unless they were about dying children or fertility) because,
well I am constantly aware that it is just a story. It is exactly the same with films. I have
friends who sit beside me tearing through the tissues at the Notebook or
Moulon Rouge whilst I sit there, profoundly moved or sad or whatever, but
unable to cry.

Meanwhile put on something as seemingly futile and 'comedic' as "What to
Expect When You're Expecting" and my face erodes into a meandering river of
tears, snot and mascara.

I, like most people in life, am not comfortable with being venerable. So
crying doesn't sit too easily with me- especially in anywhere public. Hence the car-park-crying ritual post consultation. Its a cracker.

That would be awfully 'un-British' of me. And Allie doesn't do crocodile
tears.

When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop. It is only afterwards that we tend to step back and think- Wow, that was solid. I was solid.

My earliest memory of crying was at a family day out at a theme park and I
must have been young as I had reins on (you know, like a dog lead but for
children. Yep my parents tied me up and walked me like a canine and they wonder why I have authoritative issues) Mother Darling left to go on one of those things that shoots you vertically up and waits...and waits... then comes hurtling back down again. I can remember screaming thinking it would collapse and kill my momma- I
couldn't understand why she had left me to do it... and worse, she left me
with dad. I mean who would feed me?! I would have grown up on a diet of
baked beens and silage wearing potato sacks as gucci. It is a funny memory but kinda distressing.

Firstly, I think we do not like crying because It is.. well it is upsetting
in its nature.  However, if we have something to be upset about, then crying
allows us to express ourselves and vent. And it speeds up the process, the
storm passes so much quicker, like its on fast forward. If you bottle it up,
stuff festers and that isn't good. Who wants mouldy emotions?

When we are younger we cannot properly confront how we feel so things take
time to heal, but when we are sentient adults, we have no excuse bar
cowardice, not to confront the truth and deal with how we feel. As a kid I
was seriously bullied for five years. It took me almost double that to not be angry
anymore and accept an apology I never got. To some extents I think I will always be scared and effected by it but it has happened and I am sure as hell not going to let them still win today. I am a happier, better and bigger person now because of it. And in many ways I think of it as essential Karma... It equipped me swimmingly to mentally fight my endo. I do not believe that I would fair as well had I do  now had I not had to work through that stuff as a younger Alice. So I have screamed and shouted and god knows I have cried and mourned for parts of my childhood, but the tears helped wash it under the bridge and now the burden has been lifted- and it feels great. And the best bit is that it taught me the importance of loving yourself from an early age which usually comes later on.

Endometriosis is crap. There is no two ways about it.

But so is cancer.

And living in poverty in Ethiopia.

And having your life tipped upside down in Syria.

And having your heart broken or losing a parent. 

And a million other things.

The point is bad stuff happens every day, to all sorts of people; rich or poor, good or bad. Its is all
relevant to your life and your experiences and perspective- and unfortunatly there isnt much we can do about the facts of the situation.

Don't sell your self the illusion (which I am always guilty of doing) 'I
strong and I do not cry.' No Al, you're not a robot. You're an idiot sometimes
When you are going through hell, it is quite often that you just push on, do
not give yourself time to cry because sometimes we are scared we might never
stop.

Allow yourself that time.

It is good to have the occasional cry, and sometimes for no reason. I sobbed
all the way home from work the other day in the car, no one knew (except you
reading this) and now I feel so much better. Some people would liken it to being constipated but obviously that person would not be me..

When you have endo you have so much armour up all the time to get through
the daily routine. And you are my hero. But it's heavy- so give your self a
break but without indulging in it.

I know we often cry a lot form pain, but I am not talking about that.

Empower yourself to just be. As my annoying friends sometimes tell me, it is okay to be venrable.

And then you can carry on being superwoman.

All my love,

AlXXX

Thursday 12 June 2014

Day 130, Hocus-Pocus-And-Everything-Acupuncture

Endo 365

Okay, so if you have read a blog of mine previously (bless you) then you may be aware that I am a closet hippie and am up for giving anything a go and generally keep my mind as open as my gob.

So of course, Alice has taken a little tip down the route of acupuncture.

Or as my very dyslexic grandma calls is (I love you, you gorgeous little shrivy): ’Ackie-Punchie’

As you man know, I have been doing it now for three months but only wanted to write a blog after the dust had settled and I felt I could reflect more objectively. 

I have read numerous times over the past five years about acupuncture being brilliant for endo, and for some reason never took it up. I think there is an element of variables: when you are pursuing different medical routes you try and stick to one new thing to work out whether it makes a difference. So perhaps I didn’t want to mix voodoo and menopause- who knows.

All  I know is that two months after my ‘metamorphosis’  surgery I was getting in increasing daily pain and we all started panicking. A friend of mine was just about to start Ackieeeeee-Punchieee so not one to miss out; I decided to give it a go.

I am very lucky as one of my jobs is for a Marketing Consultancy Firm and one of our clients is a brilliant natural health care centre. So I popped down for my initial consultation (£75 Yikes!) which was two hours long talking about everything from car crashes at 3, to endo, to my bowel movements and ‘emotional wellbeing’. And yes I did cry, okay? She is just so lovely and understanding I wanted to call her aunty, climb into her oversized jumper and hug her. But I didn’t, in fear she wouldn’t see me again.

She rightly was very straight with me from the offset; because of the prolonged intense pain my body has been under, the initial course of acupuncture would have to be fairly intensive and then we could ease off until hopefully I will only need to come home from uni once a month for a lil top up. I was told there was no point pursuing it unless we were going to do it properly; they no more undersubscribe than oversubscribe.  We agreed to me going three half-hours a week for three months (with massive discounts) and then reducing it from that. However for some reason my body responded very swiftly and I only ever had it twice a week and that soon reduced to thrice fortnightly.

It is an interesting experience… I never research things like this before trying it so I have no subconscious preconceptions. However just from general discourse I had imagined that I would be lying on my front with a thousand pins dotted all over my back and in pain, coming out of the session looking like a colander.  
However, this could not be further from the truth.

They are just little hair sized pins that are so tiny they do not draw blood or leave a mark, you cannot I can only feel them go in on areas where there isn’t much fat like my feet and they are left in until you feel something. It is different for everyone, but for me… Its like a pull towards the pin and then a slight (nice) electric shock. I sound crazy I know but I am still in amazement with this. Here is a proper explanation from the British Acupuncture Council:

“In general, acupuncture is believed to stimulate the nervous system and cause the release of neurochemical messenger molecules. The resulting biochemical changes influence the body's homeostatic mechanisms, thus promoting physical and emotional well-being. Stimulation of certain acupuncture points has been shown to affect areas of the brain that are known to reduce sensitivity to pain and stress.
There is preliminary evidence to support acupuncture as an effective treatment for endometriosis, with one small sham controlled trial (Wayne 2008) and a few comparative studies against Western medication (Yan 2008, Xia 2006, Sun 2006), though further research is needed to confirm this.
It has been shown that acupuncture treatment may specifically be of benefit in people with endometriosis by: providing pain relief - by stimulating nerves located in muscles and other tissues, acupuncture leads to release of endorphins and other neurohumoral factors, and changes the processing of pain in the brain and spinal cord. It reduces inflammation - by promoting release of vascular and immunomodulatory factors Kavoussi , and regulates levels of prostaglandins.”

I read that Western technology is beginning to catch up with ackieee-punchie and they have given MRI scans to people receiving it, where they can see different areas of the brain reacting to the treatment.

 It is still hard to explain why it is so darn good for chronic pain conditions and raising your immune system, however having now tried it for three months, I can honestly say it is working. And I do not care whether it is a helping-yourself-placebo, because I am far less tired for doing it and I do not wake up in pain every day any more.

The down sides are that it is expensive. If you go to a practitioner, they generally will come to some payment deal with you because if they really are invested in helping people, they will want to meet you on a middle ground.  

However, acupuncture is now available one the NHS- arm yourself with education about acupuncture, empower yourself and take your GP. They may not be game, but do not take no for an answer- you are (I do not use this word often) entitled for an acupuncture referral if you suffer from chronic pain and endo.  Keep going back until they agree. There is something terribly un-British about making a nusence of yourself, but if it betters you in the long run- who cares? To wake up not in pain, indeed Chris” I'd run round Skipton market naked, smeared in plum jam, wearing nothing but a knitted tea cosy on me head and singing "Jerusalem".

Or if you do have privet health care or what not and would like to go independently then research places local to do, there is ever more choice so ensure you pick the right one. Ring up and ask for some information and make an informed decision before choosing which is the right place for you.  

And I really must stress, that this is not for everyone. Unfortunately this did not work for a very good friend of mine. But she is still glad she tried it because we have to give ourselves the best chance and exhaust every option. 

If you have any stories, or would like any more advice, please feel free to contact me: alice.smith@marriottfarm.co.uk

All my love,
Enjoy this weather if you can my little minx’s


Al XXX

P.s I really would like to say a huge thank you to my mother for supporting me through this both financially and giving me the little push of confidence to try it. Thank you for being so inspirationally proactive and supportive; allowing and encouraging me to give everything a go.