"I don't work"
Whenever I meet new people, the question always arises, "What do you do?" I HATE this question. If I say I'm a Stay at home wife, people insinuate laziness. If I say, "I don't work my husband does" people think we're stuck in the 50s.
What I'd like to say is, "
Educate yourself on dystonia. Then you will understand that my time is spent at physical therapy, doctor's appointments, sleeping from synergystic effects of drugs, sleeping because it helps the pain, sleeping because I was in so much pain last night I couldn't sleep. Taking care of my house and husband the best I can, wishing I could work, hoping I can give myself a shower today, and wondering if I can make the 10 minute drive to see a friend."
"Yes, I went to college. However, social workers need to be accountable and present every single day. They can't be drugged out or needing a rest when a client needs them."
"Yes, I understand that this economy sucks and my husband would be much less stressed if I worked. But we both know the time I'm putting into getting myself be tter is worth it in the long run."
"So, YES, I do watch soap operas. I can enjoy the weather on a beautiful day, provided my neck holds up. And I can't wait to go back to work, to socialize, to be involved with people on a daily basis, feel like I make a difference, and bring home a paycheck."
But....... Thanks for asking.
How would you/do you respond to this if you do not work?
Thanks,
Michelle
What I'd like to say is, "
Educate yourself on dystonia. Then you will understand that my time is spent at physical therapy, doctor's appointments, sleeping from synergystic effects of drugs, sleeping because it helps the pain, sleeping because I was in so much pain last night I couldn't sleep. Taking care of my house and husband the best I can, wishing I could work, hoping I can give myself a shower today, and wondering if I can make the 10 minute drive to see a friend."
"Yes, I went to college. However, social workers need to be accountable and present every single day. They can't be drugged out or needing a rest when a client needs them."
"Yes, I understand that this economy sucks and my husband would be much less stressed if I worked. But we both know the time I'm putting into getting myself be tter is worth it in the long run."
"So, YES, I do watch soap operas. I can enjoy the weather on a beautiful day, provided my neck holds up. And I can't wait to go back to work, to socialize, to be involved with people on a daily basis, feel like I make a difference, and bring home a paycheck."
But....... Thanks for asking.
How would you/do you respond to this if you do not work?
Thanks,
Michelle
Replies to This Discussion
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Permalink Reply by BDrake on -
AMEN! AMEN! AMEN!
I respond saying, "I'm a stay at home mom." and BOOM immediate guilt. I feel guilty because it was not a choice I made for myself. Dystonia made it for me. I did work and took care of my kids and took care of the house and took care of my husband. I felt a bit like a super-hero...now I feel like a dud because I can't do three fourths of what I just mentioned. At least not 85% of the time. I feel all the same things you do. Plus, my youngest starts school this August...then what do I say? " I'm a stay at home mom with no kids at home during the day!"
I'm right here with you Michelle! Many of us are.
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Permalink Reply by beka on -
Have you heard many say that " being a mom is one of the hardest jobs out there " ?? Don't belittel yourselves for who you are and waht you do or don't do...
beka
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Permalink Reply by Deanna on -
My fellow sufferer, staying home with your kids is a blessing even if they are in school. Use the time when they go to nap, catch up on errands and take care of yourself. Your kids will need you just as much. The blessing is, you will be there for them.
My kids are 18 and 21 and I stayed home with them. I started working on a degree when they were in highschool. I just got my A.A, 2 weeks ago. When my son, my youngest graduates next month, I reached my own goal and plan to work on a Bachelor's degree in teaching now.
The kids grow up in no time, don't fight staying home inside of yourself, see it as a blessing to take care of yourself and be ready for them in the afternoon when they come in the door. I do not regret for one moment being home. There is no higher calling then being a Mother.
Deanna
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Permalink Reply by robert on -
I do not think anyone should beat themselves up about what they cannot do, rather they should concentrate on the things they do to bring meaning to their own and other peoples lives.
Everybody has limitations dystonia or not, personally, my limitations come with to age, I cannot work and come home with any energy to tackle eg the DIY stuff. Therefore I am looking forward to retirement!
The 1950's role model of the housewife/homemaker was a good one and I don't understand why young married females feel that they should be under pressure to go out to work.
Living in Northern Ireland, I know lots of folks who depend on state benefits for everything, perhaps the situation is different in US where you do not seem to have a "Welfare State".
In US the private monopoly on health care is an issue that President Obama is addressing, pressurizing that private sector to get its act together to reduce costs.
Life is and always will be a challenge for everyone, at some point we all face huge problems, it is how we react to the challenge that defines us.
All we can do is accept our limitations and take pride in what we can do, your post was an example, your voice has influenced how we all think.
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Permalink Reply by MichelleSchwinger on -
I realized today at physical therapy, through measurements and then at home through photographs my husband took, how much ROM I have gained. YES, I'm still in pain and have to take a nap to sleep off the pain/sedative effects of drugs. But, with therapy, drugs, and Botox next week, I think I might be Superwoman. And to think 5 weeks ago I thought DBS would be my only saving grace. I'm hoping to go back to school to finish my last 2 courses of my Bachelor's degree this summer. Thank you Beka, and everyone else, for holding me together so I did not give up. Beka, is there a way to post photos of my PT progress through here??
xo,
Mich
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Permalink Reply by beka on
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I think there is just by clicking the camera icon which allows you to upload pics when you post...
beka
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Permalink Reply by Deanna on
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Thank you Robert for sharing. I sure don't mean to make this a exclusive 'sisterhood' when we have fellow, "fella travelers" too.
Are you currently in Ireland?
Deanna
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Permalink Reply by suej on -
Never feel guilty for doing the right thing for yourself....... we as mom's and women need to remember we don't need to be super heros. I'm in a position where I am wondering how much longer I can continue working. It's tough being a teacher on your feet all day when your in pain and having to write on the board and can't write legibly some days. ( I do a lot of power points and transparencies for notes . I teach high school) Right now I take one day at a time..... because that is all I can do.
Suej
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Permalink Reply by Deanna on
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Michelle, thanks for sharing. I am with you on this one.I was finally beginning a career last fall after raising kids and had to quit due to my dystonia....constant shift change, and trying to stay on meds....didn't work. I will be 41 on the 7th of June, and not sure what to do. I did just finish a degree after 7 years of going one class at a time and figured I might as well go for a Bachelor degree in the mean time....In the mean time of seeing how this disorder will change my life or not. My husband and I just got back from a trip overseas for two weeks.I was tired alot but was able to hold up. Now, home, and lots of cramping I did not even have with all the traveling. I am clueless. But, my sister in suffering, we can walk on this journey of dystonia with others and learn together as we go.
You are not alone.
Deanna
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Permalink Reply by karen on -
my sister in suffering, we can walk on this journey of dystonia with others and learn together as we go.. deanna..what a beautiful thing to say..to someone that you know only because of this crazy disorder we have..we do need the support of others to help up thru this journey..and what better place to meet friends that are the same as you..and won't care if our bodies twitch and twist..or that we have more days filled with pain than we have days that aren't..and you know that you can come in here and vent as much as possible and you don't have to worry about hurting someone's feelings like we have to worry about doing so at home..unintentionally of course..but when we are in pain for one too many days we say things that we normally would never think let alone say to a loved one..
i have had generalized dystonia 23 years..and it has taken over every part of my body..to the point that i am no longer a "walking" person..there are no more "good" dystonia days..and it keeps getting worse..i have learned to live minute by minute because you know that sometimes it won' wait till the next day for something else to start hurting..i try and get the most out of my "good" time and be hapy with that..despite what the dystonia has planned for any given day..i made the decision a long time ago that i wasn't going to let this disorder take my life a way from me it may have changed the way i have to live my life..but i will not give in to it and let it win!!
i hope your sisterhood has room for one more..because i would love to get to know you ladies better!!
karen
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