Endo 365
My day today sums up my endometriosis recovery experience durning this month: Tiring, painful but also exciting, full of love and odd in a way that only my life can be.
I woke up at a ridiculously late time for me because my body is still very tired and I have obviously been over doing it slightly. But then, no surprise there, possibly, maybe, a weekend away in Amsterdam was on the slight side of ambitious.
I had an hour of quite intense pain which was no problem as I just plugged myself into my TENs machine and reread 'Taming The Shrew' for a piece of coursework I am doing. I believe it is possible to make all time count and not be wasted.
I then had a couple of visitors which was lovely. One thing for sure, you really do find out who your friends are and what people are made of during a time of crisis or recovery. I have been a bit disappointed by people I assumed would want to ensure I was okay, but I have also been overwhelmed by love and kind intent shown by people which I never expected. Thankfully the later has been far far more common and I am so lucky. People show their true colours when you are ill and you certainly find out who your real friends are. But that is okay because you don't always like the people you trust either, like dentists.
And then an hour after this, I got a call from my lovely friend and colleague at Endometriosis UK asking me whether I am free tomorrow to go on ITV's 'This Morning' to talk about my experience of Endometriosis, raise awareness, educate and empower as many people as I can during Endometriosis Awareness week. Tune in/ record ITV1's 'This Morning' show between 10:30 and 12:30 if you'd like to see the monkey (me) perform. They guesstimate I will be on at around 11 am. I am very excited however slightly stressed about turning everything around in time, organising and articulating in my mind the objectives and points I want to make and what I would like to say. Hopefully I will be fine, and I wont do a typical Alice and wander off subject about 'all the starving children in Africa' and how 'awful it is that Tibet is still not free'... Also, keep everything crossed that I don't accidentally panic talk and say something typically outrageous and inappropriate. Grandma, I hope the prayer beads are at the ready.
Finally, the odd side to my day was panic dying of my mothers roots because they were toying with the idea of having Momma Smith on the sofa with me. Very hilarious and I have taken a picture of my art work as punishment for being so vain. Embrace the grey mummy, you are fantastic as you are; maturing like good wine into an occasionally cantankerous but mainly eccentric, brilliant beauty.
As a literary geek, I hoped the theme and metaphor of my '365' themed is evident, however belonging to a family of scientists, I feel compelled to explain just incase:
The idea is that the day of my operation was the beginning, day neutral, where my life began afresh and, in the words of my cousin and best friend, I was to be reborn. Hence the 'Day x' theme correlating to the days before and after my operation. Likewise, 365 is the amount of days in a year- this blog is meant to follow what everyday life is like for a sufferer of endometriosis, with my year starting on the 3rd of February. Its like my own little endometriosis-free New Years and Birthday.
I am now allowing myself to objectively evaluate the operation as I feel enough time has passed now where I can start to do so. I like to think it is obvious to anyone who speaks to me or reads my blogs that I am delighted by the results of my surgery so far, and as time has passed I feel no less happy with it. I am still in pain everyday, however the marina coil is still settling in and I should rationally still anticipate post-op-upsett pain. Unfortunately I continue to experiencing IBS pain, however I know the Endo did irreversible damage to that organ and the nerves in my stomach which is sad, but I must now accept that I will always suffer a degree of pain from it and get over it. I can minimise and manage the pain through diet, medication and exercise and will continue to do so. I was hoping to be back to work this week however, if I am honest I am not strong enough yet. I am still having between 10-12 hours sleep a night and will have to ease back into my 55 hour weeks bit by bit. I am so lucky to work for such kind and understanding people who are flexible around my needs!
I am far more confident now than I was before my op about how much of the daily pain it will help, or at least stabilise. I am confident I will be able to now cope with my condition whilst I am alone at university and I cannot articulate the joy it brings me to finally have that goal as my reality. I feel like such a lot of anxiety has been lifted and I feel so grateful and lucky to live in a time and place where it has been made possible for me.
I am absolutely honest with myself that I will never live a pain free life. I know this. For my family and friends that is always sad to hear, but that is my reality. What also is my reality is that I am probably happier than 80% of the people I know. And that in some strange ways is a result of how I empower myself in spite and also because of my endometriosis. Every situation, every emotion, every reaction, has an element of choice. We cannot chose the situations life leads us too, but we always always, have a choice. No matter how deep within us, there is choice in how we react in and to a situation; whether we become its victim and indulge in how bad it makes us feel, or whether we chose to take control of how we feel and move forward, it just takes time, be patient but hopeful with yourself. It is also important that you do not feel guilty if you are going through the lowest point, It takes being the victim for a period to know exactly what it feels like, which then fuels the desire to chose not to be. I certainly went through a mourning process when I was diagnosed and for various short periods since. Without the lows we wouldn't realise the highs. The important thing is that you learn to pick yourself up whether it takes 6 minutes or six months. I honestly view this to be one of, if not the, most valuable tool I have.
My thinking of this is not a science, it is a belief and it is a process. I am by no means perfect at it, it is a learning curve. I am becoming better and better at it the older I become and the more situations I face. It is even a choice to think like this. There are days where I chose to lay in bed for hours and be waited on for Lady Grey tea because sometimes that is the best I can do, or that is what I need to do. Don't always think that It is about slaying taboos and proclaiming the word 'Endometriosis' from the top of Mt. Everest, it is doing the best on the day.
My life will never be pain-free and perfect, but who's life is? 'Remember, everyone you meet has lost something, is fighting something and has had their heart broken.' I also find it helpful to remember that every person has a talent you do not possess, especially when I am on my soap box about how idiotic someone's customer service just was... e.t.c....
This month of recovery has been priceless to me. I was so ridiculously busy up until this point and slightly manic in nature, I did not think I would be able to cope not seeing a different friend every night of the week and now working 12 hour days but, amazingly, I have loved this time. I have written, read, watched TV (no daytime TV though), had time to evaluate my life and the people in it and what is important to me. I have finally had time to quieten my soul and improve and assess qualities in myself that I don't necessarily like or that have pushed friends away. Ultimately I have learnt how much I love my life, how lucky I am to be cherished for some reason by such a variety and multitude of people. Lord knows how I deserve such friendship considering how opinionated and loud I am. I hope my genuine love, appreciation and loyalty has been felt in return. I have started to redecorate my room, redo coursework from two years ago, clear out my wardrobe, and other mundane things as well.
Quite timely, this week is Endometriosis Awareness week. That means my one month anniversary, This Morning and the TEDX talk I am concluding all have a greater impact. For anyone reading this, beyond that act itself, could I please be audacious enough ask of you another favour? If everyone who read this could promote endometriosis this week, be it share this blog with one other person, or tell someone about it, or even if you just tune in tomorrow with a friend, I will be eternally grateful.
'A success does not have to be one big thing, it can also be lots of little things.'
If everyone does this, then according to my average stats, 1,500 more people per blog will know about endometriosis, and will be liberated in 17 countries world wide, and 6 continents! If you were to partake, I think that is a pretty special legacy for a monday night.
Please, if you have the time, email me your story or feedback, did the person you spoke to know about it or did many like it on Facebook? If you yourself suffer, how did you brake a taboo or tell someone? How did it feel? My email is : alice.smith@marriottfarm.co.uk
And finally, to those of you unfortunate enough to know me well: do not fear. I am finalising this blog sat on the right train to London, I am not late and en route to Aberdeen. Rationally, I know getting your head around public transport is far easier than iambic pentameter and covalent bonding but this is me. Plus I think I saw mum pack a bottle of fizz for when we arrive at our hotel. Whatever happens tomorrow, today has been a success!
Be good, be brave and most of all, be cheeky.
All my Love,
Al XXX
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