Endo 365
Ye Olde Cup and String
One of the best words to singularly describe endometriosis (if you can) is this: Debilitating.
Ironically, I am writing this blog to you sat in my PJ's (it has gone four o'clock in the afternoon) sat on my settee with 'Midsomers Murders' in the back ground. Tragic I know, and if I don't shower soon, mum will refuse to bring me anymore rose teas.
Disgusting. You just cannot find the staff these days.
Anyway, the point is- I should be in a summery suit today selling my little hind off at work today. But I am not. Instead my hind is losing the will to live listening to Inspector Barnaby and Co. Bare with me because even if you do not have endo, the same principles in this blog apple to anything you struggle with or problems you may have to over come...
So it is important that we have a support network around us at times like this. It doesn't necessarily have to be people with endo, although speaking to other people who know exactly what you are going through is beautifully cathartic.
When I was diagnosed at 14, I did not know what it was, let alone my peers who hadn't had any gynaecological problems, especially the boys! So I felt incredibly (and I mean that in its proper sense) isolated. And a bit like a freak. And the last thing you need on top of the pain and emotional trauma is self pity.
When diagnosed with endo it is easy to feel like a freak show. Now of course you learn that that is stupid, however at the beginning it is not like that. It feels like no one you come into contact with knows what Endometriosis is, which furthers the isolation and can belittle it and can be embarrassing like you are making it up (!).
To ensure I remained sane, I realise now that I built my own small, but solid network. An intimate few best friends who I was very honest with and could articulate, vent, cry, laugh, and fine solace.
Never let pride or fear keep you from being honest from your real friends. You soon learn who they are and what they are made of. Unfortunately not everyone steps up to the plate, but its not because they do not love you, but either their fighting their own battles or just do not have it in them to fight yours. Things like endometriosis equip you with the tool to be strong enough to those who need you, and that is a silver lining gift.
The more I started dipping my toe into the endometriosis networking warters via twitter, emails and attending events, the more fulfilling it became. I thought I had about made it in terms of having amazingly strong friends to support me, I thought I was sorted... But I found comfort that I didn't realise I could achieve from sharing my story and hearing others.
Be brave; take the plunge.
It isnt easy, your heart is on a platter to virtual strangers and sometimes there are hives of negativity. My advice is avoid the black hole cases like the plague; they are toxic. And do not become one. Those two simple rules should be enough to safeguard you.
Sharing your story can be very very draining so be prepared. Things are always worse when you are whoremonal and tired. And some days I just do not have enough reserved to tell my story. Be kind with yourself, strike a strong and healthy balance.
However I can honestly say that sharing my story is the key to my acceptance with it all. I was angry for quite a while- Why me? Why does no one know what endometriosis is when it has such a monumental impact on my life? So I decided to do something about it. I cannot take it away but I can ensure my life and the people in it never feel embarrased or uneasy, I tackled the elephant in the room and it is great to talk about it. I found talking about it liberating and a sort of therapy. If you haven't already, try it. I dare ya.
In the last few years 'Endometriosis UK' has undergone a huge change and offers far more to teenagers now than ever before (Beret's off to them). With support groups mushrooming, and an increasing online support network, things are heading in the right direction, however everyone can do their bit to aid this process. Raise awareness via your social media, offering your most positive and helpful nugget of knowledge and advice to those who need it- or just listening.
Sorority.
Sisterhood.
Chicks before Dicks.
Hoes before those pesky Bros.
You know what I'm getting at. Communication is essential to not only spreading awareness, but empowering fellow sufferers in the knowledge that you are not alone in what and how you feel, and what is amazing is that you do not need to explain in great detail because they know exactly what you mean.
An ineffable, universal understanding amongst fellow people.
Straight from the Endo UK website:
'Endometriosis UK Online Support Groups take place each month using Skype. The purpose of these groups to is provide a support and information to women who don’t have access to a local support group and feel isolated.
Each month our trained Online Support Group leaders choose a topic to focus on and discuss with group members.
How do I join an Online Support Group?
If you would like to join the Online Support Group, please email your name, skype username and the email address it is registered to, along with your phone number to support@endometriosis-uk.org.'
If you are a teen with endo, and you'd like to partake in a online support group on skype with me- then just sign up here: http://endometriosis-uk.org/civicrm/event/info?reset=1&id=37#.U341k9q9KSM - But be quick as there are only limited spaces! I'll see you there!!
All my love,
Be strong and stay positive,
And if you would like to share your story with me, I love sharing with new people: alice.smith@marriottfarm.co.uk
Al XXXX
Thursday 22 May 2014
Saturday 3 May 2014
Day 90, My Three Month Anniversary
Endo 365
I'ma let you into a little secret: The last threeish months I have been struggling more than I have let on. I would say one month and a half into recovery I was getting increasing pain and more frequently. The pain should be going down slowly after my op. So we had a fun trip down to see my surgeon (they're always fun because Bicester Village is en route home and mummy is always feeling sorry for me... Yay to guilt ridden presents).
He basically said that my pain should not be increasing and perhaps this pain is not down to the endo (which no longer currently resides in my tummy, although there is life long damage to which it has kudos for). He believes the pain may be down to my ovaries- which is realistically a whole new dump of shite. If anyone knows anything relating to ovulation pain etc, could you be a darling and tell me? alice.smith@marriottfarm.co.uk
Now we have got rid of my endo, the the marina coil which stops it from growing back does not switch my ovaries off which is probably now causing me pain, but if we go on the oestrogen led back-to-back pill to knock off Ye Olde ovaries, then the endo will grow back.
Can I ever win? Typical.
Of course I can, I am just being dramatic.
Anyway, it was quite horrible news, momma and al cried in the car park as only true Brits would. It felt like I had just been awarded the albatross around my neck; a life sentence of pain until I had 'The Hysteria Removed' (hysterectomy). Which could be 15 years of daily agony. And that's IF I find someone stupid enough to marry me.
But as always, I have now digested this news and am feeling positive.
(In Welsh accent for those of you have watched Gavin and Stacey) And I shall tell you for why.
Rational Al kicked in: It has only been three months since my op. I now realise being back to normal within a week was perhaps, maybe, a little optimistic and neieve. However the more I think about it: my stomach has been sliced and diced and I suddenly have all these hormones I haven't had for four years. OF COURSE things will take a minimum of six months before I establish any normality. And in the meantime, I shall enjoy the morphine.
Three months really is not enough time to give the coil to settle in when you're mystical organs are as pedantic as mine. I am young, gynaecologically defective, recovering from and op and reopening the can of mensturation and hormones so of course it will take longer than the average time to settle in and sort out. Just Relax, take it easssssyyyy.
And finally, if the worst case senareo becomes my reality, and this is it, then, well... it is what it is.
I can only accept it and work with it, being upset and defeated by it is not unfortunatley, going to take the pain away. I will just have to learn to cope and live with it because that will be my reality. I'm not saying that I won't see every specialist possible. I am not saying I won't pursuit my diet and accupuncture and yoga. I am not saying that I will lie down and take the pain, indeed I shall exhaust every possible avenue of hope. But I will accept it if it is my reality like I accept replacement bus services: annoying but you've got to adapt and go with it.
I have started accupuncture but that is a whole new story for another blog i'm planning once I am further into my course. Touch wood, so far so good.
One of the weirdest things for me is after four years, no longer being on my menopause. You can read all about my WhoreMoan related troubles in my last blog.
All in all, when all is said and done, at the end of the day, life is good.
Life is so good. And I choose to enjoy it. Simple as A, B, C.
The summer is approaching, I have so much to look forward to and come this time next week i'll have finally firmed the university to which I will be studying at for the next three years (Last minute as ever).
When I reflect over how I felt three months ago, I know a lot more now... Which is a strange thing to say. I know my fertility- which is a good knowledge as it is positive news and one less worry. I know even more about the condition and my own body. I can begin to predict and expect things about my life in the future.
I am on the better side, with hopefully in many ways, the worst time behind me. And if there are bad times ahead which I anticipate, I will equip myself with the strongest tools to fight with.
And I'll have a hell of a lot of fun on the way.
Be brave, be strong and be happy,
Here's evidence of my happiness three months on,
Now I'm off to do a tour of all the beer gardens in Leicestershire. I shall Let you know the results.
All my love,
Al XXX
I'ma let you into a little secret: The last threeish months I have been struggling more than I have let on. I would say one month and a half into recovery I was getting increasing pain and more frequently. The pain should be going down slowly after my op. So we had a fun trip down to see my surgeon (they're always fun because Bicester Village is en route home and mummy is always feeling sorry for me... Yay to guilt ridden presents).
He basically said that my pain should not be increasing and perhaps this pain is not down to the endo (which no longer currently resides in my tummy, although there is life long damage to which it has kudos for). He believes the pain may be down to my ovaries- which is realistically a whole new dump of shite. If anyone knows anything relating to ovulation pain etc, could you be a darling and tell me? alice.smith@marriottfarm.co.uk
Now we have got rid of my endo, the the marina coil which stops it from growing back does not switch my ovaries off which is probably now causing me pain, but if we go on the oestrogen led back-to-back pill to knock off Ye Olde ovaries, then the endo will grow back.
Can I ever win? Typical.
Of course I can, I am just being dramatic.
Anyway, it was quite horrible news, momma and al cried in the car park as only true Brits would. It felt like I had just been awarded the albatross around my neck; a life sentence of pain until I had 'The Hysteria Removed' (hysterectomy). Which could be 15 years of daily agony. And that's IF I find someone stupid enough to marry me.
But as always, I have now digested this news and am feeling positive.
(In Welsh accent for those of you have watched Gavin and Stacey) And I shall tell you for why.
Rational Al kicked in: It has only been three months since my op. I now realise being back to normal within a week was perhaps, maybe, a little optimistic and neieve. However the more I think about it: my stomach has been sliced and diced and I suddenly have all these hormones I haven't had for four years. OF COURSE things will take a minimum of six months before I establish any normality. And in the meantime, I shall enjoy the morphine.
Three months really is not enough time to give the coil to settle in when you're mystical organs are as pedantic as mine. I am young, gynaecologically defective, recovering from and op and reopening the can of mensturation and hormones so of course it will take longer than the average time to settle in and sort out. Just Relax, take it easssssyyyy.
And finally, if the worst case senareo becomes my reality, and this is it, then, well... it is what it is.
I can only accept it and work with it, being upset and defeated by it is not unfortunatley, going to take the pain away. I will just have to learn to cope and live with it because that will be my reality. I'm not saying that I won't see every specialist possible. I am not saying I won't pursuit my diet and accupuncture and yoga. I am not saying that I will lie down and take the pain, indeed I shall exhaust every possible avenue of hope. But I will accept it if it is my reality like I accept replacement bus services: annoying but you've got to adapt and go with it.
I have started accupuncture but that is a whole new story for another blog i'm planning once I am further into my course. Touch wood, so far so good.
One of the weirdest things for me is after four years, no longer being on my menopause. You can read all about my WhoreMoan related troubles in my last blog.
All in all, when all is said and done, at the end of the day, life is good.
Life is so good. And I choose to enjoy it. Simple as A, B, C.
The summer is approaching, I have so much to look forward to and come this time next week i'll have finally firmed the university to which I will be studying at for the next three years (Last minute as ever).
When I reflect over how I felt three months ago, I know a lot more now... Which is a strange thing to say. I know my fertility- which is a good knowledge as it is positive news and one less worry. I know even more about the condition and my own body. I can begin to predict and expect things about my life in the future.
I am on the better side, with hopefully in many ways, the worst time behind me. And if there are bad times ahead which I anticipate, I will equip myself with the strongest tools to fight with.
And I'll have a hell of a lot of fun on the way.
Be brave, be strong and be happy,
Here's evidence of my happiness three months on,
Now I'm off to do a tour of all the beer gardens in Leicestershire. I shall Let you know the results.
All my love,
Al XXX
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