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.
Midnight
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.
March 2017
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.
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