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Dear friends, stop telling me it will pass!

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I love my friends. I love them deeply. Some of them are like family to me. Thanks to them, I have more nephews and nieces than I have ever dreamed of. And I do am really grateful for the way they try to cheer me up. But I have to say this. I have to write it down so that it is clear!

Please stop telling me that it will pass!

To start with #endometriosis is a life condition, it will not pass. I might find a way to control the symptoms, maybe with time things will just get better, but in general this will not pass. I will never get my ovaries back, I will never be able to recover a decent fertility level, I will never be able to get over this sort of premature menopause I am going through (and I am not even 40 yo).

So the truth, the blatant, simple, obvious truth is that THIS WILL NOT PASS.

You want another truth? Here it is: #endometriosis is not a popular disease, not one for which you can easily fund raise or spread awareness. #Endometriosis will not kill you, but will make your life a lot harder. Sometimes to the point that you will lose your job because you can’t explain why certain days you simply can’t get out of bed. To the point that you might lose someone important in your life, simply because you can’t explain how painful intercourse is for you and you not wanting to have frequent intercourse has nothing to do with the other person but everything to do with vaginal pain. Sometimes to the point where you lose yourself, because you are not that person laying miserably in bed and you want to take action and you want to be strong and you want to react but simply your body doesn’t have the strength or the necessary energy.

So the truth is that 1) this will not pass and 2) no one really wants to listen to you complaining about a disease that they do not understand.

OK, so now what? Truth is (once again) that I don’t know. I don’t know how today is going to be and even less I know about tomorrow. I don’t know if I will be able to make it to a dinner party or to a walk around the park. I don’t know if the painkillers will be enough to keep me going. I don’t know if my back will be strong enough to play with my nephews and nieces. I don’t know if I will be able to baby sit tomorrow or the day after. I don’t know if I will be able to get out of bed and finish that damn report in time.

But I do know something.

I know that every day, every morning when the alarm rings, when I wake up, I am determined to be the best person I can be. To be there for the friends and family who might need me. For the people I am working with and for. For the organisation for which I volunteer. For the students I am mentoring. For the zumba class.

I am determined to be the best I can. And I am convinced to get the best out of each and every day. I am aware of the truth(s).

I do not need a lie. I will sometimes need a shoulder to rest my head on. I might need a hug to hide me when I feel like crying. I probably will need a hot water bottle ready most days in winter whenever I come visit you. I am quite sure I will have some diet requirements that will make your life a tad more difficult when you invite me for dinner. But we are friends right? So this shouldn’t be too much to ask for. In exchange I provide my own shoulder, endless hugs, a hot water bottle, biscuits for all possible diet regimes, and an open mind to listen when needed, and good humour to go through life with a laugh.

Now if this is too much, dear friend, let’s part ways here. No hard feelings! But dealing with judgement and the feeling that I always have to justify myself, my actions and my choices…is not helping me. And the point of us coming together is to make each other feel better, protected, sheltered. If us coming together has to become a war, thanks but NO THANKS!

And life goes on…business as usual!

 

 

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The wheel must turn!

Rejection.

Say it out loud.

R-E-J-EC-T-I-O-N

It sounds nasty. It feels nasty. It IS nasty.

This is how I felt the past year, rejected. I tried to volunteer in local NGOs, rejected. I applied for full-time and part-time jobs, rejected. I applied for grants, rejected. I tried to make new friends, rejected (although in this last case, I am not sure I was rejected or simply I rejected myself). I applied for a different bank account, rejected. Let’s say that it was not my best year. But then the New Year arrived and I was decided to feel different. To look at the world in a positive way once again. To give myself (and the world) another chance. If the sun was going to make another long turn around the Earth, I was going to give 2017 a chance of being THE year. Actually, the first year of many great years!

And by chance a couple of days ago I stumbled upon this TED Talk by Jia Jiang on rejection.

+++++++++ SPOILER ALERT: I am going to say how Jia’s talk ends, so if you don’t want me to spoil it for you, you should watch the talk before reading the rest of this post! ++++++++

So this is how Jia’s concludes his speech:

People like Martin Luther King, Jr., like Mahatma Gandhi, Nelson Mandela, or even Jesus Christ. These people did not let rejection define them.They let their own reaction after rejection define themselves. And they embraced rejection.

….

When you get rejected in life, when you are facing the next obstacle or next failure, consider the possibilities. Don’t run. If you just embrace them, they might become your gifts as well.

And that got me thinking.

Was it me? Was I just running from rejection and not actually asking myself the right questions? Did I not get the jobs I applied for because my applications were not well done and I sent them in a bit of a rush? Was I not selected for volunteering positions because I didn’t have the right skills they were looking for? Did my bank account application not go through because some papers were missing?

So here is what I did: I asked!

Not everyone got back to me, but some did. And here is when I say that the wheel is turning. Now I have two interviews coming up next week. Simply, the process took longer than I thought. I also started the process of changing bank, no reason to continue to focus on something that is not working.

So is it really the wheel turning? Or is it more like I finally started to push the wheel and make it turn? Whatever…I will go and fearlessly face my interviewers, I will be myself, I won’t be afraid to ask. Wish me good luck!

And let’s all turn the wheel!

And by the way, thanks Jia!

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New year resolutions, here we come!

vector-happy-new-year-2017-on-red-background-copyThe end of one year, the beginning of a new one.

It’s always a time to take stock of what just happened and reflect on the future. A new year is like a clean sheet, a white page where you can start a new story. You can decide what to throw and what to keep of the past, at least when this keeping-and-throwing concerns your own attitude and beliefs. As most, I also did an analysis of my 2016. I have to admit that I didn’t like much of it. Let’s forget for a sec about all the iconic singers that left us last year, let’s forget that I lost one of my greatest mentors last year, let’s even forget about the roller coaster that my job has been. 2016 sucked mostly because I sucked. I have been looking at my belly button, finding excuses, being upset, being deceived, being disappointed, overthinking everything.

Most of all, I have been waiting.

Waiting for things to change. But life is no train station, you don’t just wait for the next train to stop and take you somewhere. you are the train. You are the one moving. You can stop and go anytime. You choose. At least, I am lucky enough to be able to choose. So here it is, my resolution for 2017: be grateful for being the train, for having this enormous chance of being able to drive my life. That’s my focus for this new year, for this clean sheet, the white page: moving, forward or backward or sideways; stop and think; adjust; restart. I am in charge. This year, I won’t be waiting. It’s just too short, this life we have. Too precious. And I want to live it the way I think I should do it.

View from the mountains. This is how my 2017 started.

To achieve that, I will have to work on myself and it won’t be easy-peasy all the time. But right now, I am determined to try my best.

So here are a few things I am planning to achieve this year:

  • read more, read at least a book a month. Not one of my usual books, a different genre every month. And talk about it.
  • smile more. No more walking around with a serious expression, like if I don’t want to be there.
  • think more and argue more. Not in an aggressive way, simply avoiding being passive when someone says something I disagree with. This does not include getting into a fight with internet trolls, I refer to a civilised discussion with real people having different opinions from mine.
  • make new friends. I said friends. Real people, with whom to go out and grab a coffee and talk.
  • make lists, lots of lists, daily tasks lists, long-term lists, medium-term lists, shopping lists. And tick things off the list every time I reach a goal. One step at the time, one item at the time.
  • discover something new. Try something new: a new activity, a new food, a new place.
  • walk. For hours and hours. Possibly in the woods, up in the mountains, or along a beach.

Happy new year you all!

This is going to be a good year!

I wish you good trip!

 

 

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A good day

Warning: I will be using and abusing the word ‘good’. I could use synonyms but I like how ‘good’ sounds. The perfect sound for a ‘good’ day.

 

ahayes-today_good_day-1200x1007Today it was a good day. I woke up with no energy, looking at the grey sky I tried to convince myself that I was going to be OK and do things. Today was going to be a good day. So as soon as I convinced myself, I noticed that I had no back pain. The first time in possibly a couple of weeks. I had almost forgotten what it is like not to feel this discomfort all the time. It felt good. Good beginning for a good day.

I had a large lactose free, soy free, all free foamy cappuccino. With extra chocolate powder to compensate for the ‘free from’ syndrome. It was creamy and warm and left me with milk moustache, who doesn’t love that in the morning?

Suddenly the sky was not grey anymore, yes it was cold but the sun came out and all the colours around changed. Even if I live on a busy road, everything seemed to shine. That was good. A little winter miracle.

With the sun, my energy came back. For a moment I thought I even found a solution to a problem that has been annoying me for weeks. The solution didn’t work, but I did make quite a lot of progress in what I think is the right direction. That felt powerful. That felt positive. That felt like being alive. That felt good.

I got a phone call from a friend, at a time when you wouldn’t expect it. It was good to laugh and share updates. It was good to think about other people instead of focusing on me and how miserable I have been these past few weeks. It was good to realise that no matter how hard I try to hide, I am part of a network of people that care. We care about each other and we take news about each other, as often or as seldom as we can. But we do care. And that is good.

The day is almost over now, I decided I wanted to try something new. I am working on a new dish, a little challenge to myself. I am not sure about the final result but for the moment it smells good! So hopefully it won’t turn out in a total disaster.

On a negative note, I got blacklisted from a spinning class at my gym because I didn’t go for three times in a row. I guess that is normal. I will have to go and explain that sometimes I just can’t move. Sometimes I feel so lonely that it is like I forgot how to use my phone or how to speak to people. Fine, maybe I will just keep it simple and avoid the drama. I will just apologise for not sending them a cancellation note and ask for my account to be cleared. I think that will be OK. And guess what, even if it was bad, it still felt good to know that people out there that I don’t even know by name are keeping track of how active I am!

A good day.

An #endo-free one. Even if endo is always with me, some days it feels like things are normal. And those days are just good. Today I feel grateful that I can appreciate all these little things.

Today is a good day.

I wish you a good day too.

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Accept. Adjust. Reboot. Move on.

63830I took a long break from writing on this blog. I decided to focus on getting myself back together.
The old myself, the one I was before learning about endometriosis, the one that was able to smile through bad moments and just move forward. It took me a while, some professional support, some absolutely not serious Zumba classes and finally here I am. Back to be me.

But let’s be totally honest. You can’t go back to ‘before’. There is no way of pretending you don’t have endometriosis, and there is no way to pretending that it is not affecting your life in some ways. I guess the right word here is acceptance. Accept that this is going to be your new life.

Accept. Adjust. Reboot. Move on.

I would say that I am between the accepting and adjusting phase at the moment. Dealing with the idea of not being able to have children, dealing with some physical changes that I am not very happy with, dealing with the fact that certain days will just be bad, no matter what I do or don’t do.

But I have also moved on with the adjusting phase: changing my diet (no gluten, no diary products, lot less red meat, lot more fruits an veggies), going to the gym (oh those zumba classes are just about amazing!), walking more, working on my negative thoughts and trying to move towards more positive ideas, stressing less about work (because although I have deadlines, no one will die if things are pushed for one hour or one day).

It is all working in a way, I feel like I am moving on in a way. It is still not perfect and I have a lot of work to do, mostly on myself. But there is light at the end of the tunnel. It is a long tunnel indeed and it is much better to walk or even run through it with the support of family and friends. However sometimes, there are things you need to face alone. I decided to go through it alone, aware that it is not the easiest way and aware that people around me who love me are trying hard to understand. But not this time, this time it needs to be me. With the support of this blog of course, where I can actually see where I am going.

 

 

 

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How edometriosis affected my self-esteem and how I won’t allow this anymore

I was recently reading an article appeared in 2015 titled ‘Five ways endometrios affect your body’ by Amber Breanza & Caitlin Chang (link to the full article here). It explains quite well how endo can affect parts of your body that are totally unrelated with your reproductive system (yes, even your arms and back!). It also explains well how most of the times, doctors think you have something else (ever been diagnosed with Irritable Bowel Syndrome? My fake diagnose lasted for 10 years, until I got cysts that revealed that…I had endo instead!).

However it doesn’t say much about how #EndoSucks can affect your brain, your mood, the way you (and others) see yourself.

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Photo credit: Guardian (link here)

For me it was the hardest part: every time I was to mention that I was feeling unwell, I could see eyes rolling. My friends, my family, my partner all thinking that I was either making it or just trying not to do something I was not comfortable with or simply being lazy. I also got a lot of ‘You sure you are not slightly hypochondriac?’. And I guess I have always been slightly hypochondriac but let’s face it: even if something is only in your head, it doesn’t mean that it affects you less. We are what our brains think. This is a powerful lesson I learnt while dealing with #EndoSucks and bowel adhesions.

I got to the point where I didn’t want to get out anymore for fer of being stomach sick, avoided eating when couldn’t find an excuse to be out, kept saying to my friends that I was not hungry and they shouldn’t worry about me eating or not (most have never insisted, which has been a relief). It was harder when I had to go out with people I didn’t know well, I am shy and I don’t like being in the spot. I usually was quick at giving half of my portion to my boyfriend but sometimes it was too much even for him and I had to sat there with food on my plate that I couldn’t eat, thinking it was such a waste and I should make an effort risking of being sick.

So there I was, in this dark place where I didn’t want to get out of the house, didn’t want to meet new people, felt uncomfortable eating with other people around (just to be clear, I love food and good food in particular. Never been a huge eater but I always enjoyed a good meal and never felt weird about food, even junk food!). Then I started to think the same about work: that I was not good at anything, that I was a waste of space, that I couldn’t but complain and find excuses for not being good enough.

And when you are in the dark hiding from yourself, you start thinking that you are not enough, that you are crazy, that you are weak, that you don’t deserve the people you have around you and that you’d be better off by yourself on a deserted island. When you start thinking that about yourself, it’s not easy to get out of it but it is oh so easy to just keep falling.

This is what #EndoSucks did to me, to my brain, to my self-esteem, to my life. Until the day I decided that I didn’t want this for me. That I deserved better. That after all, the pain, the crazy stomach, the nausea were NOT in my head but they were real and they were affecting my body for real. This is when I was diagnosed with endo. And this is when a light went on. And it has been on ever since. In a way knowing that I had endo helped me reconcile with myself.

So now, if I see people rolling eyes or telling me I am being hypochondriac, I try to explain what and how I feel. I try to explain things that they do not know and they do not have to live on a daily base. When I am at a restaurant, I get child portion or ask explicitly for a small portion without feeling ashamed, I also ask for a doggy bag if there are left overs. I eat slowly, chewing more than necessary and pick bland, uninteresting food most of the time without fearing judgement of others at the table who might think I am boring. I put my sneakers on 3 times a week for a walk/run, I go swimming and push my own limits as much as I can. I compete with myself and challenge myself but never with others, because I don’t have to prove anything to anyone.

I know I have been fighting, I am a warrior, and I survive everyday killing the chronic pain on the back by breathing deeper and swallowing and focusing on the music. My fight is easier that a lot of other people who are battling with chronic debilitating diseases. I am aware of that. But I am also aware of the fact that most of the rolling-eye people have never had to fight a battle in their life and therefore they are faster in judging. And that’s why I don’t want to care anymore about what others might think. I know now who I am. And I know who I don’t want to be. But this is between me and myself. My own secret. The dark place is always there, ready to open its doors to me, but I can’t go back there. I owe it to myself to make the best I can of this life. And smile, and cry, and feel all the things I feel without fear.

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Why I need now to challenge myself

I decided to challenge myself, once again. I decided that I need to get back in shape, put those sneakers that I bought a few months ago and start using them. I decided that it was a good idea (and a good moment) to resume my gym membership.

It was all sudden.

I decided I was going to challenge myself. It’s a simple challenge to be fair (no, I am not going to run 27 marathons in 27 days. And actually, no, I am not going to run any marathons at all. Not yet). My challenge is much easier, it is about running (I am currently on week 2 of the Couch to 5km training program) but more than running, it is about not giving up. Getting to the end. This is a 9 week program, I just completed the first week and barely started week 2. I feel good. I feel healthy. I feel like I can do everything.

And I need to get to the end of this.

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Not to be able to run for 5km (which per se would be fantastic), but to be able to tell myself that I can accomplish things. That endo is not not going to stop me from doing what I want to do, for achieving the goals I have in mind. And more than endo, my awareness of having endo and therefore of being chronically sick, will not stop me!

So here it is, week 1 done. Week 2 on-going. And another 7 weeks to go!

Now it’s here, written down on this blog. Out in the air. I have a challenge to win. I have a life full of opportunities to grab.

No more letting go because I feel like ‘I am sick and won’t be able to do it.’

Life is here and now, and right now I decide that it is up to me to live it as I want.

If anyone would like to join me (virtually or in real life), please leave a message.

Endo sucks, but we are stronger!