My Letter to Fibro

Dear Fibro,

You came into my life unexpectedly, unannounced, and have set up camp indefinitely without my approval. I didn’t even know something like you existed, that I could ever share my life permanently, so early on with something so mysterious and uncurable. You took away my job, stunted my pursuit of my dream, my independence, my adventurous lifestyle, my desire to start a family. With you now taking center stage I don’t have much control. Every decision is made or not made because of you. I’m unable to visit my mother and family abroad because it is too painful to sit for more than an hour, before I was able to take 15 hour flights with ease. I’m unable to live in NY and work part-time to audition for acting gigs, before I was able to work 14 hour days. I’m unable to surf, ski, dive, ride a zodiac or jet ski, go on moderate to difficult hikes, camp, cliff jump, all because I live in a 90 year old body at the age of 35, with no explanation or cure to help me understand this condition and give me hope.

I also live in constant uncertainty, hour to hour sometimes minute to minute. I don’t know what each day will look like until I’m living it which makes planning difficult. Planning has a new meaning to me now, it’s to give me hope, not to actually execute it. Consecutive 6-8 hours of well rested sleep is in the past, now I wake up from pain, pain is my new alarm clock. Some days it wakes me up after 5 hours, sometimes 2. I don’t know if today I’ll have enough energy to wash my own dishes, some days I can swim for 30 minutes, run errands, and do chores around the house. Some days I’m comatose in bed. But everyday I force myself to do something, even if it’s to take a bath to sooth the achiness, because I must make myself move and activate my body somehow in a 24 hour period. Some days I don’t know if I can’t get out of bed because I’m so exhausted or I’m depressed. Some days I wake up wanting to end this life in misery but instead decide to take a break from fighting you and lose myself in a tv show. I don’t know what my future looks like being dependent on my boyfriend – financially and physically. You robbed me of my independent, youthful, adventurous life at 33. I used to be hopeful, wide-eyed, excited about my future. Now I dread what that looks like being dependent on others and not living the life I had always dreamed for myself where health was a given necessity, unquestioned, assumed. I never knew that health was a gift, luck, a fluke at such a young age.

Today I try to stay positive and be thankful for what I do have. I have all my limbs, I can walk, I have eye sight, hearing, I have a mouth that can taste and express my experience. I have a magnanimous boyfriend who supports me in every aspect of my new life with an open heart and arms, who makes days possible in the best place to heal: the Big Island. I have a devoted dog and an outspoken cat at my disposal to smother with affection. I have loving and thoughtful girlfriends who although thousands of miles away keep me sane and connected via skype , facetime, phone conversations, and texts. I have a generous mother who constantly offers assistance. And most importantly I have time. The main difference between the terminally ill and a person with fibro is time. I have time to be with my loved ones, that is a gift. I also have time to perfect taking care of myself through diet, gentle exercise, low stress life choices, and finding joy in the smaller things with the hope of getting better. There’s no guarantee that this effort will cure me or even reduce its symptoms, but one thing for certain is it can be worse without it.

Yours reluctantly,

Sara

Very well put! Welcome to the forum

Take a bow young lady very well put ,spoken for every Fibro sufferer out there

good venting idea. you go girl!

Wow wow wow, i cried just a bit, and am thinking of a letter too. Hopefully mine will be as gracious, as i am in the anger stage., mostly because just when i'm feeling better, old familiar symptoms errupt, mostly cognativatly. I dont like that you have this at all, but i'm thankful for your shareing. I'd love to share with family, and friends ,may i have your blessing?

Amen !

Thank you DK_engineer, Forgetmenot, cmetryme, scren, and moe1959 for your kind words it really brightened my day.

moe1959 thank you for asking for my permission, yes ofcourse you have my blessing ^^ I am touched that you want to. I too am still in the anger stage, it comes and goes, it's a roller coaster ride of grieving my past life. I am sorry about your symptoms, the fibro fog and reduced cognitive functions is very very frustrating..and confusing. I hope you write a letter too! I found great comfort in writing it, sharing it and reading the supportive responses.

This made me cry. It is so right on for the fibro sufferer. I like the idea of the letter, I may have to write one also.

Dancingwithfibro, this is absolutely amazing. I think all of us here understand your every word. It's a wonderful idea to write a letter to fibro! Fibro entered my life at the age of 25 and I get really depressed thinking of what the rest of my life will be like. I sometimes have a hard time remembering what my life was like pre-fibro but I do remember that I was happy, and like you I had lots of dreams and ambitions! Hopefully one day we can find a cure for this draining syndrome! Sending much love your way! xoxo

You are welcome! Our souls see your! And our hearts with your heart! Every your word is our feeling. Thanks for sharing!
Gentle hugs!

Dizzyray YES please do I have written many letters and they're not always coherent or thorough but it still is therapeutic

MEH* you were so very young to have had this condition, I am so sorry. It is hard to think about the future but yes we must try to keep hope that there will be better days and even remission! Hang in there. Big hugs to you!

Zolisindigo I can feel your positive spirit, I accept it whole heartedly =)

Dear Sara,
wow, thanks for that letter, you spoke right through me. I envy you 4 things, a loving boyfriend (I live alone and own a home I must manage), a dog and a cat (unconditional love), and you still have your mom. I am 56, it started when I was about 37, two years after my daughter was born. I will never forget, at two years old, that was the last time I was ever able to lift her up into my arms. Your letter covered it all - planning, oh gosh yes - I tell friends, its hard to make commitments. Most do not get it as I "look" normal, attractive even. I remember the next 3 years, parenting her from the floor, as I could barely walk. well - I just wanted to applaud you for your insightful, dimensional letter to fibro. I need to try that too. WalkingBarefoot

WalkingBarefoot, it is my pleasure. Yes I do feel very blessed for my family, I really will be lost without them. I can't imagine being responsible for a child with this condition, I know people do it and make it work the best they can, as yourself, and I truly applaud them and you with great admiration. I will like to have children one day, I'm not getting any younger, but it's oh so very hard to think that would be wise with this condition. But can't stop a girl for wishing for the best!