Yes, I am a wife, a mother, a chairperson and advocate for the right for patients with Ehlers-Danlos and Marfan on national and international level, but a super woman that I am not.
Many people think that I am not sick, that I don't have symptoms because it seems that I do so much. 'It seems' that is the key expression.
I have a whole team of volunteers behind me to reach my goals, I have a cleaning person that once a week swings by to do the heavy housework, and mostly I have the support of my family: my loving husband Ronny, my daughter Ashley, my son-in-law Jonas and my youngest son Jason.
My house is a mess, clean but messy and not always to the standards as I would like, but my family copes, understand or jump in to help me do the chores.
Especially, my husband, how understanding can he be! He knows that if I went to the bi-yearly large patient conference, that I will come home and be horizontal for a week! Does he complain? No he does not, he understands and tries to do extra things for me, even after working hard at work himself! He understands when I have given myself to the cause, that I am practically crawling over the floor the next days from the pain. He does not always like it, but he knows how important the cause is.
He gives up, sometimes our quality time, because a crisis needs to be averted, an email or telephone calls must be urgently made! He gives up quality time because I fall asleep from exhaustion when I have had a rough day. He is there for me on the good days and bad. Of course, we struggle like others in our relation, but those moments are soon over because we talk and discuss a lot. We are truly a team.
It has been difficult for Ronny. First to accept the diagnosis, secondly to learn that two of his children have it as well, thirdly every time there is a new change, like a wheelchair that I sometimes have to use, or the stairs lift that was installed last week because climbing stairs has become very difficult for me. He may have his moment of grief at that time but he goes on!
Many patients in my world may think that I am not as ill as them. They should only know!
With a lot of humor, lots of resting, physical therapy, with a lot of pain, I go on. I will not let this EDS rule my life, I will rule it! It may seem that I am very active for those who see not behind closed doors. It's not that I try to hide it, but that I chose not to let this beast have control over me.
I do it all, little by little, and on other days nothing, through the support of my family, friends, my physical therapist Els (Mia en Sylvia) volunteers and patients! Thank you for giving me the strength to go on in my daily struggle and bringing a smile to my face!
