dancingwithfibro
Distinguished member
- Joined
- Jul 27, 2015
- Messages
- 111
- Reason
- DX FIBRO
- Diagnosis
- 02/2014
- Country
- US
- State
- HI
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
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
