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Thursday, October 25, 2012

What it feels like to be broken

I have been a bit quiet on here (or at least it seems to me that I have as I haven't been checking the stats everyday or drafting up new post ideas). There is a reason. I have been dealing with some news in my real life and its been taking over all my emotional energy and draining my desire to write about anything else. It has been all encompassing and yet I have been too scared to share it on here. I am starting to feel ok with it or at least accept it so I guess it is time I release the news into a public forum. More-so for myself so that I don't get buried under the weight my mind is putting on myself by going over and over and over it in my head. It seems appropriate and somewhat ironic that today is all about I heart my body and yet the whole reason for my emotional turmoil is because of my body, and the last thing I feel at the moment is love for it.

I was officially diagnosed with Polycystic Ovary Syndrome (PCOS) recently. For those of you sitting at home wondering what the hell I'm talking about, you can read more about it here (so that I don't have to go through all the symptoms myself). It has been both a relief as such and a curse. It was not a shock, I have suspected it for years since I had fertility problems in the past. It is reassuring (in a strange, twisted way) to know that there is a reason why a lot of things have been and also haven't been happening for me. It is nice to know that I am not imagining or making up all of the symptoms I was experiencing. Everybody used to tell me to just relax when I was trying to get pregnant (FYI worst advice you can give someone who's ttc) and that it wasn't my fault. I started to think I was crazy. That there wasn't actually anything wrong and that I was just looking for excuses as to why nothing was happening. Then, when my marriage broke up everyone was consoling me with "it was all him it has nothing to do with you", "you will be able to have a baby it was just the stress of the relationship". As naive as it sounds I hoped that they were right, but on a subconscious level I knew it was me. I knew this pain would continue. And I was right, but not in a good way like where you want to go running back at people and throw "I told you so" in their faces.

I am having huge issues with my body right now. I have never really had a healthy positive relationship with my body thanks to years of low self esteem and then being told how crap I was by so many people. Then, when I had infertility issues my self loathing deepened. Now, its at a whole new level. I used to think that my body was against me by not letting me get pregnant. Like everybody else could just decide they wanted to get pregnant and their body would follow suit and do what it needed to do to reach the common goal. I have always felt like my body hated me and wanted to punish me, but deep down I knew that was crazy. Now I feel completely disconnected from my body. I feel like my brain and my soul are trapped inside this vessel that is doing everything in its power to work against me and against my dreams. I know that it could be a lot worse and that there are a lot worse diseases, conditions and injuries out there. I am thankful that I don't have anything worse but to me at this point in my life it is one of the worst things that could happen to me as a woman.

PCOS makes me feel really alone. Its not something people want to talk about and its not something that people can easily relate to. I think that I must have got it genetically (as I don't have the usual lifestyle factors) which makes it even harder as nobody else in my family, that I know of, has it. Nobody understands. It makes it even harder to sit here and wonder why me? Why did I have to be the one to get this? Why, when I always thought I was born to be a mother, was I essentially born with a syndrome that causes the exact opposite? It's not fair. But, it is what it is and I just have to deal with it. I have met some wonderful people online in support groups (and of course T is nothing short of amazingly supportive as usual) and without them I know I would be in a much darker place right now. I am so grateful for the relationships I have made with complete strangers and the fact that together we can help each other through this.

Thanks to Mel for this awesome banner

There is no cure. I will never be "normal" not that I ever feel like I have been. The good news is that I can fight it in order to hopefully have kids in the future. I fully intend on fighting it, and succeeding. That is the small light in a somewhat dark tunnel. I have hope that one day sometime in the future, however far away from now, that I will infact be a mother. I will have children. I will never beat this fully, but I will not let it beat me. It doesn't lessen the emotional pain that I am feeling now, but I know it will make me appreciate it much more when I do have children.

The part that scares me the most is the fact that my cysts could turn into cancer. I feel like there are these little time-bombs ticking away inside me and I never know when I'm going to piss one off and it will turn into cancer to get back at me. Before I just imagined I might have cysts, but now that I have seen them on a screen in front of me (and there are many) its hard to forget that they are there. It bothers me more-so because the same year my father died the lady two doors down (my friends mum) also died from cancer (from similar causes to PCOS). She was only young and she got very sick. I can reconcile the fact that my father died young because it was of his choosing, but the fact that she died so young, from cancer and she didn't have any choice in it never really sat well with me. Now it really scares me.

I am trying not to let myself go there though, because the thought is too scary. I am trying to imagine the future with me and T and everything that we ever wanted. I mean seriously I think by now I deserve a break. If ever there is a reason for me to live in the moment and not worry about the future this is it, so that is what I am going to try really hard to do.

Toni x

Would you like to comment?

  1. Sorry to read about your sad news. I'm really not sure what to say, because it's hard to sometimes say the right thing and at the right time.

    The good thing (as in a positive way) is that you now have a diagnosis to work with, as before you felt something was wrong but didn't know what it was. It is also a very brave step that you have written about it here and I hope that others who have experienced PCOS will come forward to share their views.

    It was a good idea to contact support groups online as you can sometimes feel more at ease discussing it with people who have the same diagnosis and find out about any treatments, medical interventions, dietary plans etc that they used and what were the reactions. Even if you just talk with them at times it may be a help.

    Just take each day as it comes.

    1. Yes the support groups have been amazing. I really am glad that this happened at a time when the internet is such a profound influence in everyone's life. It has helped me to connect with others, share my story to help others and get the thoughts out of my head. It in itself has provided a great source of support. I cant imagine how lonely I would have felt if this happened a number of years ago and all these options weren't readily available. There really is never a 'right' thing to say, but knowing that people even care and would help if they could is enough :) Thankyou

  2. So sorry to hear about your struggles with PCOS. The good news is that it's a treatable condition through maintaining a healthy weight and diet, exercising, and controlling hormonal symptoms with hormonal therapies, such as oral contraceptives and spironolactone. Your support group sounds like a very effective means of coping as well. By loving your body enough to do these things for it, you can greatly reduce any risk of uterine cancer. Try to relax and take one day at a time. There are many stories of women with infertility problems who decide to adopt, and once they do, they become pregnant.

  3. Nothing quite like finding out something really is wrong, when you kind of suspect it in some odd fashion. Its good you've decided to fight it, and I can understand how it affects the writing urge. Luckily sounds like you are taking all the steps you need to, so I know you'll fight it well. Good luck with it, but above all, enjoy life, no matter what's thrown your way!

  4. Sorry to hear you are going through this. I am not very familiar with PCOS, but I know a few of my friends have it as well as other problems like Endometriosis. I can relate to you on the subject of cancer, as I am going through precancer right now. I need to have surgery but I am too scared to - plus I don't think my limited insurance will cover it and I sure as hell can't pay for it.