Terms to Ponder When Living with Chronic Illness

I’ve talked so much about the confining nature of chronic illness. Because of the fatigue caused by Sjogren’s, Fibromyalgia, Ehlers Danlos Syndrome, and other chronic illnesses, I don’t ever get a break. I’ve been mostly confined to my home for about eight years.

A Chronic Voice is such a wonderful host for the monthly Writing Prompts for People with Chronic Illness & Disability. Writing about these terms is very freeing and reading what others have written encourages me greatly.

Confining

I leave the house for doctor’s appointments or when I’m with my grandkids. All the other days are spent in my recliner. I do get up to cook supper, do laundry and a few (company’s coming) chores. I’ve tried everything to improve this, but nothing has worked.

I have severe fatigue all day and it is the same all day. I don’t feel any better after sleep or even pampering like a massage. Long ago, I’ve come to accept my situation. Most days I do my best to accomplish something, even if it’s just blogging. Of course, blogging is fun and I have loved it since 2013.

I look out my den window, and am thankful for it. I had a few years without any window in the living room. It was dreary so I truly appreciate looking out at nature. I watch a lot of tv, but sometimes it’s just background noise. I’m always amazed when Hubby takes me to a doctor’s appointment. It’s surprising to see the change in seasons. The change in seasons is beautiful and sometimes it seems like I’ve forgotten what the world looks like.

Draining

My medical bills are draining our retirement savings. We saved all we could before retirement, but only a multi-millionaire could afford to live with chronic illnesses. My insurance costs a fortune and I truly hope that next year I can sign up for Medicare. The premiums for medicare and the supplements are still ridiculously high, so it’s going to be bad.

My dental bills have been outrageous. I take good care of my teeth, but they’re doomed . Sjogren’s causes me to have a very dry mouth. My teeth were crumbling before I even got the Sjogren’s diagnosis. They seem to be on a faster path to destruction.

Since the money is fleeing our accounts, we’re living as frugally as possible. It seems that more doctors are refusing to take insurance. Their prices are through the roof. Right now I’m wanting to try PEMF therapy, but the only practitioners offering it don’t take insurance.

Invalidating

This isn’t political, but our government is trying to invalidate or lesson the power of the Olmstead decision. By the DOJ Guidance, that’s allowing states to choose to no longer help disabled people to live at home, we are hearing that we don’t have any worth unless we’re productive members of society.

If a state would follow this new Guidance, what would happen if a parent with a severely disabled child no longer receives disability and medicaid? That parent can not afford all the expensive medical care that is needed. Those people who are in this position might be put in an institution in order to receive services.

It’s shameful that the ADA wasn’t signed into law until 1989. Now, there are those willing to invalidate the protection and invalidate our choice to live in our own communities. Putting people in institutions and keeping them out of public can’t be what we go back to. We are all people and we all have worth.

From the arc.org: “Yes, people with disabilities can still bring Olmstead claims. The DOJ’s June 2026 opinion or July 2026 Federal Register notice don’t erase the ADA, Section 504, or the right to challenge unnecessary institutionalization. But if the federal government steps back from enforcement, people with disabilities and advocates may have to rely more heavily on private lawsuits, state advocacy, and disability rights organizations to protect these rights” (https://thearc.org/blog/doj-opinion-on-olmstead-threatens-the-right-of-people-with-disabilities-to-live-in-the-community/)

Anchoring

The older I am, the more I’m aware of my need to be anchored. Living in this world is tough. Chronic illness changes who I am. I hope it’s made me a little wiser and understand life with a better perspective about what’s important.

If I weren’t a Christian, living would be so depressing. Of course, even Christians can have depression. The difference to me is that, whether or not my body’s pain brings on a level of depression, I am still able to feel joy and contentment.

Contentment has always been hard for me. When I was young, I was a driven, competitive person. Finding contentment was very difficult, and I was always trying to be better. No matter what I had, inside I wanted something better.

Now, I can tell that God is teaching me to be content. I am not there yet, but living this way anchors me to reality. Having the peace and joy that God brings is anchoring. We have this hope as an anchor for the soul, firm and secure. This is a verse from Hebrews 6:19.

Restoring

When I think of restoring, my mind goes to old cars and old houses. Sometimes certain treatments can lead to a person restoring their health. So far, there have been no treatments that have worked to restore any part of my health. I’m sure that I’ll keep trying.

Trying to restore my scalp has been a nightmare. I think that the Psoriasis is starting to improve. I saw someone on TikTok explain how the scalp becomes inflamed and out of control. One day I wash my hair with a Salicylic acid cleaner and then alternate that with Selsun Blue. Twice a day I put these drops on the spots of Psoriasis: Centella Ampoule . I don’t know if I’m doing the right way, but my scalp is at least 50% better.

It would be amazing if it continues to restore the health of my scalp. The next thing I want to try is PEMF for my Lumbar Multifidus. I recently learned that these muscles are to be a stabilizing factor for the lumbar spine. My terrible spine continues to get worse every year. I learned that these muscles are deep and not affected by tens units. They become inactive and can’t support the lumbar spine as they should.

The (hyper) lordosis I live with is the worst. It’s the pain that causes me to sit down after standing for a few minutes. I can’t stand around and visit with people, and have to sit down after about two minutes. Cooking is almost impossible. I have a stool in the kitchen, but it’s not a perfect solution. I have to get up and down all the time. So, I just cook extremely easy recipes.

I also can’t walk more than about five minutes (and often much less than that). I don’t like being in a wheelchair, but at least it allows me to go with my family on excursions.

If what I read is true, the PEMF could restore my ability to walk and stand without excruciating pain. Even if it’s a small improvement, it could definitely improve my quality of life.

I truly hope that you can experience some improvement of your physical health. We all want to get better and have a more functional body. If your body doesn’t improve, I hope and pray that you will be able to experience the joy and contentment that I have.

@2026, copyright Lisa Ehrman

Disclaimer: I’m not a medical professional. This post contains my experiences and opinions, and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.