What It's Like Living With Fibromyalgia and Acting as Caregiver to 2 Seniors

Here is my story of a day in the life living with fibromyalgia and being a caregiver to two seniors. I was diagnosed with fibromyalgia almost nine years ago, although I knew that I had many years before. Since then, I have been unable to work anymore, have difficulty walking, brain fog, irritable bowel syndrome (IBS), and most of the comorbidities that come with fibro.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I am a caregiver to my mother, who is 93, struggles with chronic vertigo and my 89-year-old aunt who has memory issues. They are both a joy, and I always say that they do not give me a hard time, they are having a hard time. We are blessed to have each other and support one another mentally, emotionally and physically.

My day begins early in the morning — if mom is up, then so am I. My body however, would love to stay under the comforters and not feel that pain and stiffness when I get up. We start the day with a big hug and ask each other how we slept and how we feel. We sit for a bit, heating pad and stillness for me, maybe a meditation. Coffee and prayers for mom. We talk a bit about what our plan for the day is, meal plans, and my aunt will call and tell us how she is doing. Since December we have been living in the same building as my aunt, on the same floor, which makes my life a million time easier.

Whoever is feeling better will make breakfast, and I will apply a TENS Unit and start my responsibilities.  Mom does dishes, some meals, and the overall kitchen. She has trouble hearing, seeing, and major balance issues which make me jump every time I think she is going to fall. I do everything else, including preparing meds, helping her shower, cleaning, paperwork, bills, etc. My aunt is more self-sufficient and maintains her apartment and cooking. I take care of her meds, bills, paperwork, doctors, etc. One of the hardest parts of my day is listening to my body, and pacing myself.

If I start doing too many things, then my body pays for it, and pain and anxiety settle in. I can also easily get overwhelmed with so much on my plate. I constantly prioritize, re-focus, breathe and pause. All vital. I try to carve out quality time for myself every morning and one hour each night.  I call it “me” time.  Self-care is the most crucial part of my health, both emotionally and physically. I believe if I take care of myself as well as I can, then I can take better care of them. I plan my healthy meals, try to walk a little bit, stretch, meditate, journal, write, go outdoors, nature, photography, paint, etc.

The most important is reaching out to family, friends, support groups either on the phone, zoom, text, in person. I was isolated so much during so many years, I thought no one wanted to be around a person in pain who couldn’t do all they could, I felt like a burden. I became more and more isolated with just mom and my aunt, and it took its toll on me. I do what I can, enjoy my time with friends, and compromise if it’s too much. My time has helped with my anxiety and depression also.

On Saturday nights, we watch movies. During the week we reminisce, laugh, and go for rides. Once in a while, we order our favorite foods and enjoy each other’s company. Unconditional love. The Three Musketeers. Their support and understanding of fibro has helped me tremendously.

I have a list of things that help me when I am in a flare, or anxious. These are life-saving tools that enable me to distract myself, talk to others and rest, what helps ease the pain and calm the anxiety. The list grows all the time and I take things out when they no longer help me. When I am in a flare, all I want to do is curl up in a ball and shut the world out. I usually get pretty quiet when the pain becomes intense; it helps calm my mind and body.  They both know and respect it, as I know when mom closes her eyes and rests her head, it means she is spinning out of control, and has to take it easy.

No two days are the same; mom has horrible days and decent days, but we make sure we always communicate and look out for each other. She is good about reminding me to take my meds, to pause because I am doing too much, to rest, to stay on my healthy meals, to go out and get some fresh air.  I do the same for her. I wait until she naps in the afternoon before I go out, because this way I know she is safe and not in danger of falling.

We have a special bond. I know they worry about me, as I do about them. I listen to people complain all the time, and I think to myself that I have nothing to complain about. As I said before, we are blessed.