To work or not that is the question. My wife has Fibromyalgia which from now on I will abbreviate as Fibro.You fight some days just to get her out of bed, whether it is depression, fatigue or the burning in her joints. Now she has to face an employer who long ago has lost any empathy he had for your problems or "excuses." He certainly doesn't understand Fibro, the world doesn't understand Fibro, so how can I expect more from him?
Working gives us a purpose, value and to interact socially. To paticipate in interesting, challanging, and stimulating activities. It gives all of us structure and purpose. We have a goal,plan,and act on it. When you work your psyological wellbeing and quality of life is better. Society defines us by what we do/our occupation and we put value on ourselves also. I think it is important to value myself for who I am, rather then what I do.Being realistic, we do have to acknowledge the road blocks. It's hard to think positive and not internalize your feelings of self worth. When the time comes you must finally reconcile yourself to going to the Social Security Administration (SSA) when you can no longer work. Is this the end of the road?
You shake that constant thought of Social Security Disabilty, which she would be eligible for. What would that do to her self esteem?The thought of being "disabled hurts her to the pit of her stomach".I'm I no longer a useful member of society?", she asks. I try to comfort her and explain there are other things she is still able to do. While racking my brain at that moment to think of at least one or two things she can still do. Thank goodness I'm a quick thinker and she's accepting of me no matter what I say, what a team.
Unlike the aged who turn 65 and can earn $5,00 a year, we can not earn a dime. Rightly so, but it feels like its another way of undermining my self esteem.
The employer by law has to provide an environment under the ADA ( Americans Disabilities Act) with reasonable accommodations to complete your job, Well as a nurse that seemed rather impossible, at the time. So now I am her husband, friend, confident, sole financial support actually I'm her everything. Oh, one thing they forget to tell you about the SSA, once you are accepted through their process, it is a six month wait before you receive ANY money or medical coverage(Medicare).That period of time can make or break a marriage. The first check is not retroactive so you are already behind before you start recieving Medicare or a check.
If you have Fibro be realistic regarding what you CAN do physically.Be creative find solutions. Just the fact that we both acknowledge our feelings is a big help. We try not to internalize, personalize or react in a manner that will stop us from exploring or doing that activity to succeed.Don't discard your dreams, just alter them. Decide what you want as a team, make a goal and set your sites on it. You may not get it accomplished on the date you both expected. It was both of you working together, that was the important part.
I know how close she still holds her nursing license even though it remains inactive. For her it is her way of reminding herself that she is and was a terrific nurse.
I love watching her sleep at night. Not just because she has sleep apnea and stops sleeping occasionally, is on her apnea machine. But because that's the time I have to myself, and my memories of my sweet girl. Who at this moment, does not look in pain.
Frank Eckert
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