Hey there, hi there, ho there!
This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.
“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS). This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.
My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com
Now that we know a little a about Emma, let’s look at her Friday Feelings entry:
Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family. For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.
My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!
I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.
Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.
I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.
A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!
Want to write your own Friday Feelings entry?
A high res photo
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 firstname.lastname@example.org
Be sure to put “Friday Feelings” in the subject bar.