It has always been easier to talk about certain things in English. There is a kind of detachment or of a secret code which only certain people can decode. There are words which do not even exist in Spanish, so I feel braver if I start writing in English. I started thinking about it some days ago when one of our Endosisters suggested we could keep a kind of blog and then share the links in the group. There you have it, we do not have a word for Endosisters in Spanish, and it is such a special word, I wish we had an equivalent for that.
There were two main issues which gave me the courage to open a new blog about my daily life with Endo. The first one: most people talk about the degree of the disease, how many treatments, pills, doctors, surgeries and so on. There is a kind of negative talk which can be helpful at first just to let things go and release the pressure inside. But then, it makes Endo look worse than it is, and it becomes the main star on our movie and I do not want that. The second one: I read something like “chronic uncured disease” and I said “Wow! I am not able to speak like that in front of people.” I must admit, I am always afraid of what people might think, of not getting a job, of not having enough work or of being looked at as someone who is disabled and ready to retire.
When I realized I had Endo and that there were these nasty things with additional tissue all over my abdomen, I was frightened because I thought it might get worse sooner or later and that multiple bleeding and endless pain would spread in a way people would notice. I started reading a lot, doing research, contacting people from different endo organizations, joining support groups all over the world and meeting endosisters on line. Then, no matter what my family or doctors said I made up my mind and decided on myself, doing meditation, exercise, affirmations and special diet. I can say that everything is a lot better. More than one year ago, bleeding could last almost three months and it was sometimes so bad that I could not go out without having to run back home in less than half an hour. My bleeding lasts only seven days a month now and it is not so heavy as it was, it might be, but only a couple of days. As regards pain, nausea, feeling sick and other symptoms they are still there, a week before menstruation and during it, but it depends a lot on my attitude, stress, my emotions and how healthy my life is. There are times when I can control nothing about Endo, but I have learned to live with that.
I do not want to know the size or how many of them there are, or where they are located exactly, because I know this disease cannot be cured, not now. Therefore, I do not care how long I live but I do care how I live.
Many days (most days) I am a normal woman, I can go for a walk, I can ride my bike, I can work more than twelve hours a day, I can write poetry or just whatever comes to my mind, I can be creative, I can help people, I can teach, I can do massage, I can translate, I can have sex and enjoy it more often than a healthy man can do, I can be passionate, I can make a living even if I am unemployed, I can cook magic and delicious food, I can move all the furniture around the house just to make a change, I can paint mandalas, I can knit for myself or for others. I like working hard and I do not feel like retiring, not now and not in twenty years time.
Some days I am ill. I can hardly get up, I have to stay in bed, I have to take painkillers, I look awful, I feel so exhausted and weak that it is really hard to do what I have to do, I feel so sick that I want to die soon. On those days, I cannot have sex, go for a walk, ride my bike without feeling painful, I cannot work overtime, I cannot even sit too many hours in front of my computer. Nevertheless, I can love, be tender, be watchful, be helpful, I can listen, I can read or watch a movie.
Today I got a big box with free samples of menstrual pads because I joined a Marketing Project and I have to post my comments about how I use them and I have to share my experiences with friends. Then, I came up with the idea of writing a different kind of blog, of having a different look at the disease. I decided to have fun and enjoy the sunny days as much as I can.
August 1st/ 2nd 2012
NB: I am 47 years old and menopause should begin soon, so they say. I hope symptoms will not be so serious when that happens. Nevertheless, I haven blessed because I had the chance to be pregnant and have three beautiful children before I got so ill. I have been a young mother; my first daughter was born when I was 20 and I now I am a young grandmother with 6 grandchildren, although I am not the granny type. But that should be the topic of another post.
I have to say holistic treatments do help. My own research and chosen treatment have helped me overcome the disease without going under surgery.
I highly recommend reading the work of Dr. Christiane Northrup and listening to her audios.