Thursday, October 13, 2011

Behind closed doors

I am writing this post because I received a letter from Social Security and they are reviewing my case. They are going to decide if I am able to work yet??? Has there been some great cure for fibro yet that I don't know about? (Lyrica is NOT the answer like they say on tv) Is there some great thing out there that is going to give me my energy back 100%? I know, everyone gets tired during the day....but I wake up in the morning and about an hour or so later I want to go back to sleep. I can't drive very far by myself because I don't know when I am going to fall asleep. There are times I have to call Jim and tell him where I am because I am pulling over to close my eyes. THEY WILL JUST NOT STAY OPEN!! One minute I will be fine and then all of a sudden my body just shuts down and I have to sleep. Not to long ago I had to take a 30 minute nap in the home depot parking lot. Jim can usually tell when it is coming on, my words start to slur. They don't see me wake up 3 to 5 times a night. They don't see me get up take my meds and go back to bed until 10:00/11:00 most days. They don't see me take a whole week to do a hamper full of laundry. (could be done in 1 day) They don't see me not take a shower for 2 days and if I could go 3 days, I probably would. Just the thought of getting up and exerting myself to take a shower is so painful some days that I just don't do it!! If I do go out it is usually to the grocery store and then to the YMCA. My pain doctor suggested yoga, I liked it just couldn't get to the class on a regular basis. I can ride the bike to no where though and it makes my hip feel better for a couple hours. (my hips really hurt, especially the left one. it really burns, like right now the pain is about a 7+)

They don't see me laying down when my husband comes home from work and asks, what's for supper? If I don't have some meat defrosted in the sink for him to cook on the grill, he will volunteer to cook something else or go out and pick something up. Some weeks Jim has had to take care of supper 4/5 nights out of the week.

They didn't see me when my daughter has come to visit me and I spent 2 of the days in bed.

They don't see me when I don't leave the house for days..They don't see my husband going to social functions without me because I hurt to much to go and am also too tired.

They don't see the look on my face when my legs, ankles and feet are hurting and I have to walk. If I am home and have to go to the bathroom sometimes I will hold it as long as possible just so I don't have to walk. (I have IC, so that is not a good thing to do either)

They don't understand the passion I have for gardening and having a beautiful yard and that having to let my flower garden and vegetable garden go, kills me! Not being able to get out and work in the dirt when the weather is body is useless to me!!!!!!

They don't see when my husband can't hug me because know matter where he touches me it hurts!!! They don't see THAT NO MATTER WHAT I AM DOING, MY PAIN IS FORE FRONT ON MY MIND!! I am typing this and I feel the pain in my left hip, my knees, my arms, across my shoulders, across my lower back, my ankles and right now my feet are about a 3. Even when I am talking to someone, my pain is there! THE PEOPLE READING MY PAPERS, READING MY FILES, THE DOCTOR THEY MIGHT /PROBABLY WILL HAVE ME SEE, DOESN'T SEE OR FEEL ANY OF THIS....BUT I FEEL AND LIVE IT EVERY DAY!!!!

Yes, I do have some good days! My good days are never pain free days though, just low pain days! I never know when they are going to happen???? Do I have great days....? I can honestly say I have had maybe 25 in the last 4 years! I can honestly say, I remember about a 3 hour period where I felt completely normal! No pain, nothing! I felt like ME!!!! I was over joyed with happiness!!

How do you make someone see and understand the pain you live everyday??? How do you make someone understand that you try to live as normal a life as you can? That your normal is just surviving the pain some days??? There are no tests to prove that when I am smiling, I am hurting on the inside...everyone on facebook sees all the "pretty" pictures that I post, what they don't see!!! I post what I want everyone to see!


  1. Oh sweetie.... Do I understand that one! Posting pictures where you're smiling and happy so that life looks normal! Except it isn't normal anymore. Nothing is normal anymore. Just know we all do the same thing...

    Hugs (very light one)

  2. I cried reading this post. I understand so much of what you are going through. I also am a fibromite (with many other diagnosis) and am married to a Jim. It is so hard on both of us. I hate that he has to ask me if he can touch me or hug me, and I hate even worse when I have to tell him no or if I flinch in pain. I haven't been able to cook a dinner in over a year. I also understand falling asleep all the time. I fall asleep in my shower chair sometimes and it scares me that I'll hit my head in the shower and drown. Somedays I am awake only 4 hours. People say they wish they could sleep all the time, too, but I wish I could stay awake all the time. I hope things get better for you and I hope Social Security realizes how bad it is. You are right-Lyrica is so far from a cure for fibro it isn't even funny. I hate the Lyrica commercials on TV, it makes it look like we can pop a pill and we will be "all better." I wish! I wish so badly for a cure, but I don't think we are anywhere close to it, yet. I do believe there will be a cure someday, though. The best we can do is try to manage each symptom as it comes. So far I haven't been able to figure that one out, and neither have my doctors. I was diagnosed with fibro at age 15 in 1996, I'm 30 now.

  3. I understand, it's unfortunate that we have to fight so much. I wish I could find a doctor to understand, a family that understands. I wish they all stopped expecting meto be superwoman.