This is a letter that I wrote to my husband in 1998. We met in January 1997, and in March 1997, I became really unwell again. I had no idea that we would still be together 20 years down the line, let alone married for the past 18! The reason why I put this letter up on my site, is because it pretty much sums up how I felt then, and how I still feel even now. It also seems to touch a nerve for other women who visit my site. I only hope that it helps other women express their feelings to their loved ones, as much as it helped me express mine. Thank you Lee, for letting me use such a private letter, in order to help others.
As you may have gathered from my earlier e-mail - I am unable to sleep and so I thought I would write to you.
It is nearly 3.00am and I am wide awake and in pain. I have taken my pain killers and now have a glass of whisky by my bed side that I am slowly sipping. I am hoping that once this is written, the whisky will be finished and so I will then be able to get some sleep.
I don't really know what it is that I want to write to you about. But I know that I am better at expressing myself in words on paper, than in words by mouth.
The other night when you said that you were frustrated, you gave me such a fright. I really thought that you were going to tell me that you had had enough, and that you wanted to end it all. It was the most terrifying feeling that I have had in a long time.
You said that you wanted to know how I feel and what I am thinking. To tell you the truth, I don't honestly know at the moment. I feel as though I am in limbo and that I have no direction in life. I know that one day all of this will seem like a long bad dream, but at the moment I feel that it has well and truly taken over my life. I don't feel that I have a say in my life any more. I have to live by the rules that are determined by my body, my hormones and my pain. I can no longer live by my rules, doing what I want to do, when I want to do it.
I don't feel as though I am in charge any more. I feel as though everyone else has a say in what I do, except for me. I know it sounds silly - and to a certain extent I am still in charge. I can still keep an eye on what I am given drug wise and if I have to I can persuade the doctors to listen to me. But this isn't the life that I had planned out for me. This is not where I want to be and I wouldn't wish this kind of life on anyone else.
My mother tells me that I should count my blessings and that I am extremely lucky in many ways. I have a house that is paid for, I have you and to a certain extent I have my health. I have all my faculties and I am not dying.
Great. What about a life? When I look around at you and all our friends, I see people getting on with their lives. I see people living their lives to the full - doing what they want to do, and achieving things that I should be doing and achieving.
By now I should be in a job where I am happy and fulfilled, going out and enjoying myself, and generally having a laugh. But all of that has had to be put on the back burner, while I concentrate on my health.
I am so jealous of all of you. It eats away at me sometimes when I see the lot of you going out and enjoying yourselves. Sometimes when I am in hospital and I hear that you have all been out and had a brilliant time, I cry myself to sleep. Other times I'm determined that I will be there with you, when I know that it will make me worse - and it always does.
If someone had told me 4 years ago that I would be living this life, I would have laughed in their face and told them not to be so silly.
When I was diagnosed with endo, no-one told me that it would be like this. No-one prepared me for this oblivion. Not even when I rang the help line was I warned that it could go on and on and on.
Every time the pain went away, it was like a small miracle and my hopes were raised. Every time my pain went away, the hopes of my family were raised too - and I was "better". Then of course it all started to come back and I was suddenly ill again, but according to everyone else it was all in my head.
It has been so hard to try and get people to understand this disease and then you come along and take it all on board. You have been amazing. You have accepted me from day one as me. You have stood by me, where other people would have run away. I know that you have found it hard, and I know that you are still finding it hard, but you have a strength in you, that no one else has had.
I know that my friends have stood by me - but they have watched me over the years, and gone up and down with me. You - on the other hand - just walked in and took it all in.
When we first met and I told you that I could get ill, you accepted it, but I don't think that you knew how hard it was going to be. I wish that I could have prepared you better, but then I don't think I knew either.
This thing has a habit of creeping up on me slowly, and starts to pull down my defences and barriers that I have built up during the short time that I have a break from it.
It is a bit like a fog that crawls and creeps its way in from the sea, slowly covering every nook and cranny, covering everything that gets in its way. There is no way of stopping it - once it decides that it is going to happen.
The only thing to do is to try to control it as best as I can - and even then that is hard work. The drugs that I have been on have made me worse, the pain killers slow me down, and basically I am a mess at the moment. I don't know how you put up with me, I really don't.
So far the Mirena seems to have made me worse rather than better, but at least there are no horrific side effects, like I had with the zoladex.
I am bitter about this whole thing, and wish that it had never happened. I am scared that it will last for ever and that it will never go away.
I often think "why me?" and that I want my life back - I know that it isn't going to kill me, but at the same time, I know that I don't have the energy or the get up and go that I used to have because of it.
I am scared of the future. I am scared that I won't be able to have children, or that if I do I will be in so much pain that I won't be able to care for them.
I am scared that you will get fed up with it all and leave me. I don't think that I will find someone as good and as kind as you. You are a good man. I am so very, very lucky to have met you.
So basically, I have not come to terms with this disease, and I don't know if I ever will. I am fed up with living like this, and of letting everyone down all of the time - especially you.
I know that there is hope on the horizon - the mirena might work and I will be pain free - but it seems so far away and so much like a dream that I just can't get my hopes up - if I do I know they will be dashed to the ground again. Instead I will just live my life day to day - and take each day as it comes.
I am sorry if this is so depressing, but you wanted to know what is really going on inside my head. I have laid myself bare to you. You now know what I feel - most of the time.
I hope that you will understand me better now - either that - or you won't want to know me any more.
I love you, and will go on loving you as long as you want me and need me. Antonia