Conservation of Energy

When I was younger, I thought I would grow up to be a music therapist and structured my high school course work to match my projected career path. I took only the minimum required science courses – earth science, biology and chemistry – and not physics. I stayed away from physics because I could never remember all the formulas and equations. Density, momentum, power, work and energy – my brain hated this math dressed up as science. Even now, the only physics concept I relate to is the law of conservation of energy. This law states energy cannot be created nor destroyed, merely transformed from one form to another.

I relate to the law of conservation of energy because I live my life juggling energy. I talked about this before in this post when I wrote about Christine Miserandino’s spoon theory and how it applies to my life. I have “good energy” days and “bad energy” days. Unfortunately, I cannot predict when either will occur. Sometimes I will have multiple meetings scheduled for work, but I wake up and discover it is a bad energy day. When this happens, I know I must conserve what little energy I have so I can accomplish the most and still have energy to get home, go to the bathroom and get to bed. Sometimes I will have nothing planned, but I wake up and feel full of energy. When this happens, I try to accomplish as much as possible without overdoing it and accidentally causing the next day to be a bad energy day. Since my femur fracture in January the energy required to complete daily tasks has increased, forcing me to juggle enjoyable pursuits such as writing, with required activities, such as employment, with creativity.

Lately, my energy level has been more depleted because I am once again struggling to maintain adequate Personal Assistant (PA) staffing. I’ve written before about the importance of good PA staff and it turned out to be one of my most popular posts. This tells me I am not alone in my struggle. If you haven’t read that post about how my life is different when personal needs are met, please take a moment to go read it now. I’ll wait. Really – go read it.

In physics, objects have potential energy. I remember it as the stored energy of an object in relation to another object. I know, that definition is too simplistic, but remember I didn’t do physics. A coiled spring has potential energy, as does the string of a bow which has been pulled back by an archer. Potential energy is influenced by force. In my case, my body has potential energy and my PA’s impact the level of potential energy each day through the force of their work.

Physicists describe work as the force required to move an object. There is a formula to calculate work but as I’ve already explained, I am bad with formulas. What I do know is work transfers energy from one object to another. This I understand, because when I have adequate PA staffing, their work creates energy in my body. When my PA shows up on time in the morning to help me get out of bed, go to the bathroom, shower and get dressed, I have more energy. When my PA comes as scheduled to help prepare my meals and perform basic housekeeping, I have more energy to pursue those activities which matter to me (employment, writing, crochet, and more) because I have conserved the energy I would have otherwise spent on other tasks. Likewise, when a PA is late for a shift or calls out at the last minute, I am forced to waste expend energy on locating a replacement so my basic needs are met. And when the PA who is scheduled to assist me at the therapeutic pool with my outpatient physical therapy has car trouble or difficulty with childcare, I am unable to engage in exercise which helps build strength crucial to my ongoing recuperation.

Other outside forces impact my energy level. I have more energy when I am warm than when I am cold. The physicists might try to apply some law to this (thermodynamics?). To me, it’s as simple as cold causes pain and pain makes movement more difficult. I also rely on mechanical and electrical energy frequently – my power wheelchair, my electric bed, the transfer seat base in my van.

My life is a constant struggle for energy. Energy is a precious commodity which must be conserved and managed in order for me to engage in my community. When the force and work required to maintain my energy is not consistent, I go into survival mode. I stop doing the activities which bring me joy so I can preserve the energy required to get me through basic daily tasks. Over time, this drain on my energy creates stress on my mental and physical health.

Suffice it to say – I’m still recruiting new staff. Maybe I need to change the job title to “Energy Conservation Technician” instead of “Personal Assistant” to more accurately reflect the true value of the work.

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21 thoughts on “Conservation of Energy

  1. Denise, thank you for sharing your life and daily struggles. All of us have a few days of this in our lives, but for you it is every day. You are a strong lady and I can not tell you how much I appreciate your honesty. Loved the spoons story, too.

    Liked by 2 people

    • Thank you for commenting Stella. Some days are better than others, which I know. But a recent string of tiresome days makes it difficult. It’s not easy for me to be honest and vulnerable, but I know it helps others relate. I’m so glad you read about spoons! Now you’ll be ‘in the know’ if you hear someone mention it.

      Liked by 2 people

  2. I understand your energy conservation issues far better than I’d like to. The bit in the Spoon Theory about it taking two hours to shower and get ready to go somewhere was me exactly. Yesterday’s dishes are still in the sink. Need more spoons! I fear the thought of having to rely on PAs and can’t imagine having to think about whether they will show, on top of everything else. It has to wear on you.

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    • It can be tiring to be the CEO of me (that’s how I describe it). But, the right PA makes life so much easier. I have been blessed to have many wonderful PAs over the years. Sadly, until we are able to pay them what they truly deserve, we will have to take what we can get. I am grateful to the loyal friends and family who help me out when paid staff issues arise.

      When the time comes and you require extra help, I’m here with an ear and loads of advice. Everyone will need assistance if they live long enough. Lucky me – I belong to the only minority group anyone can end up in at a moment’s notice!

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  3. This is one of those areas that I can relate to, though I am not physically disabled, per se. I am still waiting to feel the energy that my doctors assure me will return once I gain an adequate level of Vitamin D.

    Taking care of my parents three days a week pretty much assures me that I will NOT have any energy on those days when I am not there, because I have used it all up.

    I don’t really understand the idea of having a PA, because I guess I would have to pay someone, and that’s completely out of my budget. Being poor sucks in so many ways.

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    • Vitamin D does help me, at least it did when I was taking it. I probably should check to see if I need to get back on it…

      Caregiving is difficult, demanding work and can definitely drain energy. Without my PAs, I would tax the energy of my friends and family to the extreme.

      There are programs in most every state to help people who require long term care gain access to those services. I’m happy to discuss with you in more detail. I receive my services in NYS through a Medicaid program for working people with disabilities.

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    • It’s not really that frustrating to need assistance. It’s more frustrating to find GOOD assistants to perform the job! Good news – my primary weekday morning PA returns to work on June 6!

      Liked by 1 person

    • Thank you Valerie. Some days I don’t feel so strong. Then I think about what I’ve done these past 5 months and I realize I just may get through this year after all.

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  4. Just found this blog. You’re very honest about your needs and how things go for you. I’m totally blind and have psych disabilities. I’m currently living in a residential facility with a friend who has psych disabilities and physical disabilities due to her weight that would make having a good quality of life for the two of us practically and emotionally not possible without help. However neither of us honestly would trust living in our own apartment with PCA/ caregiver help because we’ve heard of so many horror stories of staff not being dependable or even sensitive to their needs. Plus there’s a whole thing with our differing disabilities and what technically would be allowed for care all the paperwork aspects ETC. Trying to find a situation where we could possibly live with others with disabilities and help each other get our needs met, which I feel is better than flakey service providers at least in some situations. But so far good luck to us! I will follow your blog and read.

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    • I’m glad you found my blog! Thank you for sticking around to read this post. I try to be honest, although it is sometimes terrifying to honestly write about my vulnerabilities.

      I empathize with your situation. I have been using Personal Assistants for 9 years now. I have had some fantastic employees, some good employees who weren’t a good fit for me, and of course a few bad ones. Thankfully, there have been more good than bad.

      I do know some people with disabilities who have decided to move in to an apartment or house together to help manage their care jointly. It can be done, but it takes diligence and determination. Good luck to both of you!

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    • Thank you so much! Trust me, I am not that strong and have had many moments of complete emotional breakdown this year. I allow myself my 15 minutes of self pity and grief, then talk myself out of it and remind myself the show must go on.

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  5. You have such a way with words! “Math dressed up as science,” ha!

    This past year I have learned the concept of “energy bucks” … that I must “save up” and “pay for” whatever energy I expend. A steep learning curve! I am steadily improving–almost made it through a complete school year–but the energy lessons are something that will stay with me.

    Always I learn from you, Denise. Thank you for these articles–yes, I went and read the other one. (Thank you for “waiting” while I did!) As we age, the issue of needing help will come to all of us. You show us the way to handle these changes with competence and grace.

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