my wish is to be happy with that im going to be in pain every day of my life, i want to be able to accept that and just live with it. i want to be over grieving my old life. one day i want to wake up and not be in too much pain to stand up. i want my friends to come over and me to be able to laugh at the same things they do.
i think the problem is that i was forced to grow up too fast, when you have this disorder at 16.. you cant just have an attitude like a teenager you have to be an adult. i feel disconnected from my friends, i feel like i dont deserve to be alive anymore.
my mental issues are eating me alive, i want to be like all my other friends who laugh and run around and ride bikes. one day, i want to be like them.. i want to be happy.
some days i feel normal and others i feel like no one will ever understand my struggles and my everyday life
You are very deserving to be well and happy and young! You are such a wise, caring, lovely young woman, who deserves a bright future! I was very happy to get your note this evening! I hope you have found a good Rheumatologist and they are taking good care of you. Aliana, ask them if they can take better care of you, and if your Doctor could be doing more for you, mention it to your Mom. I know she is dedicated to you!
Please stay close to us, come to us when you need to! We are always here for you, always happy to be a part of your life! We really care!
My rheumatologist told me that a lot of research is going on with fibro right now and he believes that better medicines will be available in five years or so.
I do think that a cure will be available within your lifetime and that you'll one day get your wish of pain free living. You might not be able to live as a 16 year old but you'll be able to do so many wonderful things. Meanwhile, maybe you could do less physical things like a sleep over with a movie? What about some simple craft, like crocheting, that you could do with other friends in a group setting? Mad Libs- they come in books at the book store and are funny sentences where nouns and verbs are removed and you plug in weird ones before knowing what the sentence is. That's a fun game to play with friends. Rummy Cube and Scrabble are two more. Fun can be had for you even if you can't do a lot of physical things. Maybe if you structure some fun activities you can do and invite some friends over, you could feel more like a normal 16 year old again.
i hope some of this helps you, Aliana. i do think there are often ways around the limits we feel we have in our lives if we think outside of the box.
I've read your comments and debated in my head how to respond.
For all my living memory I've lived with fibro. I drove my parents (and myself) mad with my insomnia, unexplained pain, sensitivity to light, noise, odours, migraines, constant wringing of my hands. I didn't know any different so I just got on with life as I know it. I am now a mother and a grandmother. I've had a brilliant life with two incredible children, successful career, I was a workaholic until I had to retire due to seronegative arthritis
What I'm trying to say is don't allow yourself to be defined by your illness. True friends will accept you as you are, the others aren't worth your energy. Adapt naturally to your limitations, don't focus on them.
We all live with pain and other sensitivities but it doesn't mean our quality of life is any less. It's all relative to what we kn3ow and e
xperience. You certainly do deserve to be alive because you 'feel' life so much more than those so-called normal people..