I worked part time for many years and now I can’t. My brain is in the habit of not identifying the things I can do (some exercise, laundry, some working around the house) as work, even if I volunteer. It’s a very rigid mindset and a hard habit to break. I can’t “work” for wages now, maybe later, maybe never again.
I wouldn’t feel this irrational thing if I had retired, but I’m on disability now.
Anyone have hints or experience with changing an outdated mindset to a respectful one that better fits reality?
I posted my discussion yesterday. After “sleeping on it” I realized I had a mostly a vocabulary problem! ha ha which I found very funny in the moment. Rather than describing what ever I do as work, if I put “something of value to myself and others” in its place I can certainly come to terms with that. I’ll have to practice…
Hi Carol,
I just wrote a great long reply on my iPad and lost it when I messaged my daughter to tell her that the baby had now dropped off to sleep. She is lucky to have a live in babysitter who can be guaranteed never to go out anywhere except to hospital appointments!
If I understand you correctly then I think I have suffered these feelings most of my life. I worked 13 years then had babies and was unable to return to work as the youngest needed 24 hour care. 25 years iater I went back to an outside job for 10 years before having to give up at age 66 to look after my mother. All those years of caring were hard physically as well as emotionally. I felt I had no choice as someone had to do the caring and I was the best person for it and yet I always felt guilty, unvalued and judged as somehow using the situation I was in to avoid going out to a ‘proper’ job. I was lucky that my disease struck after I retired but I am sure that if illness had prevented me holding down a job I would have had the exact same feelings.
Nel, Caregiving takes so much heart and much more energy than people realize! It’s also an exercise in managing personal frustration because caregivers lose some of their independence, too. It is work!, but hard to understand for people who haven’t been there. I don’t like to think about others judgements because it’s a disappointment to experience but that’s happened to me, too.
Lately it’s been my own bull-headedness I’m coming to terms with. It got me through school and part-time work but I kept experiencing health consequences, sometimes big ones. I tried exercising past my limits recently and spent more time in bed recovering! I see a little humor in my stubbornness, but I don’t like recovering from my errors :). It’s discouraging. That realization is helping me accept slower progress. Progress is happening and I’m really happy about that.
If nobody knows my condition I might get judged even at church, but it might be my imagination because working hard at church and for others was so important to my mom. I’d been doing passage meditation (ha ha, modified for narcolepsy) and met with that group on Tuesday, and the reading we do reminds me that God doesn’t require anything but moving toward God and seeing that our families and others benefit from kind attention. I’m not used to making a point of that, but I’m reminded in the writing of Eknath Easwaren, and in Bible study which we cancelled during Lent.
Actually, reading is something to celebrate since I’d always fall asleep when I was working part-time, raising kids, etc. It feels like I’ve gained a basic human right! I’m very thankful for what I can do.
I’ve also been skipping counseling appointments because my insurance wasn’t covering it, but I’d better go back or all my posts will be this long! No one will be able to read them!!!
Thanks for the smiles, Ashley! Yes, we worked as young as we could in the city, babysitting and taking the berry and bean picking busses out to the fields in summer, but kids aren’t allowed to do that anymore. 
I remember going to a little store where the bus stopped afterward and buying a bottle of orange Crush with my berry-stained money and drinking it on the porch.
I’m just getting accustomed to admitting I’m feeling better, too. It was tough for number of years and I don’t want to go through that again. I’m really glad for social security because I had no other options and it saved me!
Parents with narcolepsy have a real challenge!!, but my sons (in their twenties now) understand me just fine. I love them completely and the fact that they see me as normal in our family context is a gift. We used to have a rule: any decisions Mom makes while she’s falling asleep doesn’t count, unless it’s a command like “don’t drive the car…” That was ignored and it cost me a head gasket :). Have a great weekend!
Hi Carol: I am having difficulty with this too, as I essentially have worked full time for 39 years. Since I gave up my job at the end of March, I am feeling very useless. I, like you don't seem to be able to characterize the thing around the house that I can do as work....as doing something that has a purpose. This has been very difficult for me to accept as my career involved care-taking of others. Now I'm having to take care of myself with very few others around. I have no hints on what you and I can do to change our mindset. Since I associate work with rewards, (i.e. a paycheck, the smiles on my patient's faces when I interact with them), I think it would be helpful if our families or people close to us would at least give us a small compliment on the "work" we do accomplish at home. I don't know how to express that to those people. It makes me feel needy. I have found that I have to give myself a lot of pats on the back lately and tell myself, you did a good job Debbie. Sorry I'm not much help. But I will say way to go Carol. You are doing a GREAT JOB!
Consider yourselves all patted on the back! I guess I have had more pats on the back from my Ben’s Friends than I have ever had in my 70 plus years:)
Hi accidentprone and Nel!
I associate work with paying my bills but I worked for so little (at a job I loved - teaching art to elementary school students at a before and after school program) that the money part wasn't so rewarding and that's a plus in an unexpected way. I'm capable of living on a budget :). I've taken your advice and patted myself on the back more and I'm feeling better about what I can do! Now it's spring and you wouldn't believe how happy I was after pulling some weeds that were fewer this year because I'd pulled some last year! So I'm feeling a positive change that I wish for all of us who struggle with the work/reward/identity dilemma.
And Nel, Ben's Friends volunteers and members are so supportive I know I'm in the right place in this moment. I agree sooo much about those generous pats on the back and appreciation here at Ben's Friends.
Hi Carol: I am also learning again to live on a budget, or I should say, at least trying to. It's frightening not knowing when or if assistance from the government will come through. I loved my job also. My wages weren't the most important reward of my job. Seeing the smile on my patient's faces when they saw and talked with me was my most important reward for my work. I really miss that perk.
I'm really struggling with my identity this morning. I have to make a trip to Salisbury to sign some paperwork regarding my nursing license and can't find a soul to drive me there which is frightening to me since I had a rough night. I did sleep but I had episodes on and off all night where I felt like I was going to lose consciousness. Therefore, I am kind of feeling the identity of being an invalid/shut in today but I'm pushing through it. I guess I have to be strong and do what I have to do. Please send up traveling prayers for me this morning.
I will be giving myself many pats on the back today when I hopefully wind up home safely and accomplish my to do list today. Thankfully, much of my to do list involves being outside and the weather is wonderful today which will be a boost for my mood. When I arrive home, II will be digging in the dirt today which I find is wonderful therapy and even if no one else appreciates it, I will appreciate myself for making the yard look better. It's nice that you had less weeds this year to pull because you were able to pull some last year. That's kind of like my chain link fence. Last year, I worked for hours and hours, trying to get the honeysuckle vines out of it and since I was able to accomplish that, my work on it this year will be less taxing. I only have about 3 vines to remove from the fence this year. Last year, it was covered.
Carol, I'm glad you are feeling better about what you can do. Even if you are doing something small, it's something big in your life. I'm happy for the positive change for you and make sure to reward yourself. My reward for myself, is relaxing in my hot tub and listening to the birds and smelling the scent of flowers in the air....glad I don't have pollen allergies.
I'm beginning to ramble, so I'll shut up. Hope you and everyone else here has a wonderful day. Thanks again for being here. Take care, Debbie (accidentprone)
Thanks, accidentprone! Good work on those vines!
Hi Debbie,
I thought about you driving when tired and worried. Are you safely home in one piece?
I missed the hint that you would drive yourself if no one could take you. I, too, hope you are safe at home today.