Amy Marie

Amy writes:
I'm sending one picture of me in a flare, on a really bad day.  I'm also sending one of me looking "normal" and smiling with my invisible illness.

I have never lived a day without pain.  I remember being as young as four years old and crying, asking my Daddy why I always hurt so bad.  No one came up with any answers, though.  It wasn't until I was 15 that I was diagnosed with my first chronic pain condition, fibromyalgia.

About four years ago, when I was 26, I was diagnosed with Epilepsy, which has explained a lot of other mystery symptoms I have had.  A little over a year ago, at age 28, I was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that causes me severe chronic pain, joint dislocations and subluxations, GI problems, fatigue, TMJ dysfunction, abnormal scarring, and it gives me a propensity to develop osteoarthritis, osteoporosis, and degenerative joint disease all earlier than other people.

I am now 29 years old and use a snazzy shiny red walker.  I am a lot more than just my illness, though.  I graduated with honors with a Bachelor of Science in Business Administration-Accounting and a minor in English.  I am an avid reader, writer, pen paller, and blogger,  I am addicted to Twitter and Facebook and use social networking to spread awareness of Fibromyalgia, Epilepsy, and EDS.  My dream is to be an accomplished writer.  I've been winning writing awards since I was eight years old and couldn't imagine going a day without writing.  I still have mystery symptoms, and still am searching for the cause.  I plan to do a lot of Fibromyalgia education and awareness work from home on my computer on the FMS and ME/CFS Awareness Day, May 12th. 

 

If you would like to take part, take a look at the Take Part page, or email your submission to visibleinvisibility@gmail.com

 

Shelley

This picture shows two of my greatest achievements at once.  My son and I, taken on the day I graduated with a Masters in Health Psychology in November 2009.

I have achieved these things, despite having Ehlers-Danlos Syndrome, ME, Fibromyalgia, Hypothyroidism and Keratoglobus.

I am now a single parent, work part time and enjoy being creative, knitting and trying to raise awareness and do charitable work in my spare time.

It's May!

Each month I would like to focus attention on conditions which are running awareness campaigns in that month.  Please send in your contributions whatever your condition though!

May is:

• International Lyme Disease awareness month
• International Hepatitis awareness month
• International M.E. awareness month

In the UK it’s Osteoporosis awareness month and Cystic Fibrosis month.

It’s Lupus awareness month and Ehlers-Danlos awareness month across the pond in the USA.

• World Asthma day – 6^th May
• World Lupus day – 10^th May
• International ME/CFS/Fibromyalgia day – 12^th May  

• Dystonia awareness week – 7^th-14^th May
• ME awareness  week – 8^th-14^th May
• Epilepsy awareness week – 15^th-21^st May
• Coeliac awareness week – 16^th-22^nd May
• Multiple Sclerosis awareness week – 23^rd-29^th May

Please use the comments below to add any that I haven’t included.