“Dear Diary

Fridays are hard for me because I am very tired by the end of the week, especially if I have been working. I most often spend Friday evenings at home, enjoying the company of my pets and my husband. I prefer to meet up with friends on a Saturday or Sunday during the daytime, in a quiet place. My intractable migraine make me extremely sensitive to light, noise, and smell – so I have basically given up on attending parties or visiting bars during prime hours. When I’m feeling particularly well I do enjoy playing trivia with friends at a local bar on a weeknight (when it is quieter).

At this moment I feel both hopeful and frustrated. I am still young, and there is so much that I want to do with my life.

I want to be a mother in the future, and I hope that I will have the energy to be a good one – but I know that sometimes I will fall short of my expectations for myself – in this and other endeavors because of the limitations that my illness imposes on me. I have hope that new medications that are on the horizon may be able to control my daily migraine pain, but also am tired of waiting. I worry that my body will continue deteriorate. In the meantime I’m learning to sit with the pain and be as functional as possible while enduring it. I’m doing my best to strengthen my body with physical therapy. I hope that it will be enough.

I think that people have difficulty understanding chronic illness unless they have experienced it for themselves. It is hard to understand the fluctuating nature of our pain and level disability or ability on any given day. I also think it’s difficult for people to understand a condition for which there is no cure or finite ending.

EDS is not (likely) going to kill me, but it’s also never going to go away. It is a part of who I am. When confronted with this fact, most people want to “fix” it, or come up with a solution.

They might offer unsolicited advice, or suggest you’re not taking care of yourself well enough in order to ease the discomfort our condition makes them feel. I know that they mean well, they really do. So if you are a person with a chronic illness I challenge you to educate others about your life, and what it is really like. If you are a person who knows someone with a chronic illness, I challenge you to quit trying to “fix” it for them, and ask them about their experiences and true feelings.”

Thanks to Sara for taking part in our Friday Feelings blog. Can you relate to Sara’s story? Do you get unsolicited advice? How do you deal with it? Let us know in the comments below!

Want to write your own Friday Feeling entry?

Send

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A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

Until Sunday,

Z.M

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