This post comes from one of our recurring guest bloggers, Reina Grosvalet. Reina is living with mitochondrial disease but is currently doing what she can to make the best of life. She spends time not only working and caring for her cats and her cat sanctuary, but she also tirelessly educates others on what it’s like to live with debilitating and chronic illness and pioneers to make the world a more equitable and accessible place for those with disabilities.
The time is seven A.M. Your alarm is ringing, and it is time to wake up and get ready for the day. You press the snooze button hoping for just a bit more sleep. This is a routine that is all too familiar for the working class. For someone with chronic illness, things are far different.
Starting the Day with Chronic Illness
When someone with chronic illness wakes up for the day, the energy batteries are starting out at 50% or less. A person with chronic illness is not going to start the day with a full charge of energy in the same way as a healthy person. I like to compare those of us with chronic illness to a cell phone with an old battery. Think of how an old cell phone functions when the battery capacity is no longer at its peak because the battery is old. With such a cell phone, the user is limited to what tasks can be performed. The user must determine which apps are most important to run and only do what is essential to make the most of this old cell phone battery.
Chronic illness and the energy deficiencies that come along with it limits how much we can get done. Ad pain to the mix, and we are drained even further. Even though many do not believe this, but everyday tasks can be immensely draining. Depending on how bad the illness is, getting dressed and getting out the door can be a huge ordeal. The morning routine is so taxing to some that they feel drained before they even arrive at their places of employment.
Those of us with chronic illness need to determine how much we can do. If we work or care for a household, we must look at all our tasks and determine what is most essential and what can be put off until later. We cannot afford to use our limited energy on nonessential tasks. Counting the cost is a daily occurrence in the life of someone with chronic illness.
Counting the Cost
When we want to work, perform chores, take a vacation, socialize or engage in fun activities, we need to look at our energy budget. We assess how we are feeling, and we determine what each activity will cost us. Then, we work hard to balance our energy budget in the same way we balance our checkbooks. We strive hard not to go into energy debt because if we do, we pay a steep price. For some, it is a week in bed. For others, there are more severe consequences, such as a metabolic crash or crisis. We need to determine how much we can do without pushing our bodies into energy debt.
Balancing the energy budget takes lots of planning. Some of us with chronic illness decide that certain activities can only be done on certain days to allow time to rest or to keep from overexerting ourselves and suffering tremendously. For many of us who work, we may choose to only care for housework and errands on weekends and do nothing else but work and commuting during the week. Those of us who want to engage in a fun activity that may last for the entire day will take a period of rest that lasts anywhere from a couple of days to one week to ensure we have the energy we need to get through that day, and sometimes, that is not even enough. It all depends on the extent of the illness and how it impacts our lives.
Chronic Illness and Today’s work Culture
Living with chronic illness is challenging, especially when coping with today’s workplace culture which holds constant productivity in high regard. Many of us who live with chronic illness push ourselves into energy debt trying to keep up with the demands of our employers, and we must spend our weekends recharging and not doing anything else which causes our quality of life to deteriorate significantly. When all that is done is working and resting, there is no time for socializing, doing fun activities and caring for other responsibilities.
Many of us with chronic illness need to assess our situations on a continual basis and make changes where necessary. If we find that our current jobs are too taxing, we need to change our course and seek employment that will suit our circumstances. It is not unheard of for those living with chronic illness to work 100% remote because the demands of commuting and being at the office are too much. Finding jobs we can do and having supportive employers make all of the difference in our world.
My Experience with Chronic Illness
As I got older and as my condition progressed, I found myself having less energy to get all the things done that I needed to in a day. I have Mitochondrial Myopathy, a form of Mitochondrial Disease. As the disease progresses, the sufferer contends with less energy because more of the mitochondria start to fail. The mitochondria are the power houses of our cells, and they provide us with the energy to function and sustain life. In addition to contending with less energy, I have also experienced more nerve pain.
At first, I was able to commute and work at the office with some difficulty, but it was manageable. I needed to be careful how many other activities I did outside of work that would sap my energy. I had a rule that household chores and errands could not be done during the week as I could not work and take care of my chores and errands. Commuting on public transportation to and from work almost three hours each way took lots out of me. And of course, I also had to work eight plus hours a day. This strategy of handling chores and errands only on weekends worked for me for many years. Then, my health deteriorated so much that this strategy no longer worked.
Now, things are different. I must work from home as a 100% remote worker. I simply do not have the health or energy to commute and work in an office setting. Quite often, I work from my bed. I am thankful that my employer is accommodating and understands what I need in order for me to continue to do the job that I love. I am thankful I have a large support network who understands me and who is willing to work with me and love me struggles and all.
For those of us who live with chronic illness, we need love, compassion and understanding. If we tell you our energy levels are low, please accept that and show us all the love and compassion you can. If we need help with activities, please extend your hand without judgment. Also, understand that just because we could do something yesterday does not mean we can do it today because we may be too tired or in too much pain. Also, do not consider us to be lazy. Sometimes, even the smallest activities cause us to feel like we want to fall out. Being part of this chronic illness journey is tough enough, but your love and understanding can make a significant difference in our lives.