Confidence is so hard to gain when you’re living with a disability. The Condition that i suffer from is very progressive and can be aggressive when it takes the hold of you. I continuously have had to adapt to new physical restrictions. I have struggled and I’am still struggling with body issues and insecurities. I still to this day find it hard to express myself unless its on paper, i can never seem to get anything out and people around me are just as frustrated as me.I think that’s why I’m so emotional because I’am so emotionally frustrated.
I always think that there are people out there that has worse things to deal with and I’m forever grateful for the life i do live even if its not what I particularly wanted for myself.
I have lost mobility in my neck, in my shoulders and hips. I also have bony lumps on my back. FOP isn’t as aggressive now as it used to be in my teenage years. It was particularly bad from age 10 – age 17, that was when I lost the most mobility and that was also the hardest time of my life.
I Never really realised how difficult it was for my parents to see me so able bodied, and carefree when I was younger, knowing that FOP would gradually progress and someday leave me feeling trapped in my own body. Now that I’m older i can understand the heartache that they must feel everyday seeing fop take more and more mobility away from not one daughter but two. I always said they can never feel the physical pain that we go through but they feel everything.
Living with FOP is so scary and you never know what you are going to wake up to, but I’am determined to try and keep a positive mindset and attitude despite everything I’m faced with. I try to always find joy in the little things in life and notice the smallest of achievements.( This could mean finding a way to put my top on without asking for help) People take things for granted every single day, but don’t realise until that thing is took away from them. Even i take things for granted.
Fop has taken so much away from me, but I can’t imagine my life without it. I see it as a kind of blessing in disguise, not a complete tragedy or misfortune. It has led me to, lifelong friendships, strength, hope, determination, happiness and Kindness
I get frustrated with the things i used to be able to do and now can’t because of injuries,bone growth and quite possibly arthritis. Oh and of course FOP.
I’m thankful i get to share my journey with my twin sister, she understands everything i go through on a daily basis and i for sure would be so lost without her
FOP friends is where you will find all the information.
Thanks for reading.
Lots of love – Lucy xo