Thursday, February 2, 2012

The Waiting Game

I feel lost, although I'm not unhappy or depressed per-say.  I just don't know where I am going right now.  Everything, it seems, is in a holding pattern.  

- My social life.... being homebound a great deal of the time means I don't get to go out to play dates, or take frequent trips to the park where I could be meeting other moms. 

- My marriage sometimes seems to always be on hold as well, as my husband and I anxiously await an opportunity for the horizontal tango to not cause me additional pain, or just to cuddle on the couch without me yelling at him not to touch me 'cause it hurts.

- My education is on hold until my children are in school.  This is going to be a long wait, since I only have 1 of the planned 2.5 kids so far.  I know it will be at least 7 more years before I have the opportunity to chase after that Master's Degree in English Lit that I've been salivating over for the last few years. 

- Our financial situation is virtually on hold while I wait to be approved for Disability. We can't make real progress on our debt until we have that income. I've already received my first rejection letter and have a lawyer, but this waiting game could take years... and I'm willing to bet that it will, given my age. What is keeping me sane is that my lawyer only takes "winnable" cases, so at least I stand a good chance of eventually being approved.

- There's the pain and fatigue that never goes way, suspending us by our eyelids over boiling oil... forcing us to await the drop into a flare. I'm always waiting for the pain to ramp up, or waiting for it to go down... waiting for pills to kick in or work out of my system... you all know the drill.

I don't know what my Silver Lining is here, so I'm asking for your help this time.  Can you find a Silver Lining in this waiting game that we all play?


  1. Your silver lining for today is that you learn while waiting. You learn to enjoy those few-and-far-between social visits, and you learned to make friends online. You and your hubby learn how to enjoy one another without him hurting you (this one took some time for my hubby and me, but we got there eventually - or you enjoy it and deal with the pain). You learn and read while waiting for the degree - it is just a piece of paper after all. Most colleges have some of their materials online where the public can get at them - try looking up your favorite English Lit books and seeing what's out there. You may not get the same interaction that you would in grad school, but you'll still be learning the stuff you love.
    The financial thing I can't help you with - I've been struggling with finances almost as long as I've had fibromyalgia, and still haven't found the silver lining there.
    And eventually, sometimes, it won't feel like you're waiting for the other shoe to drop, because you've learned not to. You've learned to enjoy the less painful moments without the dread of what's to come (but not enjoy so much that you cause yourself more pain, of course ;) ).
    Take care of yourself, Erin. Learning is a process.

  2. Girl, you just really ministered to my heart. Thank you for sharing. I just sobbed before reading this about how I feel so lost and depressed even after 2 years of this. There is so much I could say, but right now I just want to tell you that you are not alone and that I am feeling this way with you.

  3. I just read this to my girlfriend and we said at the same time that this sounds like something I would be writing myself. I,too, am in the holding pattern with SS and also with my former company for backpay with my longterm disability and have 2 attorneys working on these. We have only her income right now which isn't enough to cover both our debt. My kids are grown but I can't come and go with them as I used to...pre-fibro(going on 2 yrs...but only diagnosed last August after a horrible fibro flare). Sometimes the fatigue hits me all of a sudden and it's like someone pulled a plug and all my energy drained out. Your silver lining my fibro friend is putting your story out there for the rest of us to read so we know that we are not alone...and are NOT alone!!!

  4. Stay strong it is a tough situation I hate how SS denies people who are truly disable and play their little game while people are suffering as if we don't feel bad enough. I was lucky when I applied I was approved the first time within about six months of my application, maybe it was because I had several disabilities that I had been dealing with for a many years and I had been seeing three very good doctors and a therapist on a regular basis they were very good about documenting my conditions and treatment attempts. Even though I was approved for SS fairly quickly my state the state of New Hampshire denied my Medicaid application saying I wasn't significantly disabled I had to appeal that and it took about another six months. Even though the social security came through fairly quickly I still ended up in a homeless shelter for women because I am single my income was my only income. If I had not ended up there I wouldn't have met my friend Dee she isn't diagnosed with fibro but she is dealing with other disabilities, we both have our own apartments now but we live in the same city she is a blessing in my life because we understand each other neither one of us has supportive or understanding families. I don't know if you feel up to it but maybe your silver-lining could be taking some online courses, I everyone experiences Fibro differently and what works for one person may not work for another. when I first had to file for disability and I knew I would become homeless before being approved I thought my life was over but instead I found a wonderful friend.

  5. I have been homeless many times because of fibro. Maybe your silver lining is that you are not homeless. I've had fibro since I was 7 or 8, and it wasn't diagnosed until 2008, when I was 33. I have never had a doctor's support or adequate medical documentation for a disability claim. I received treatment for the first time this year, at age 37.
    Someone once told me that confusion is a state of grace. It is a time to wait for clarity rather than take action. This can be a blessing. (Action takes so much energy!)
    'There is no music in a rest....but there is the making of music in it...and that is the part of life so many of us overlook.'
    Until fibromyalgia took me completely under, there was a lot about life that I overlooked.