Conquering the Fear of Pain and Loss Due to Illness


I’ve always been very independent, strong-willed, action-oriented, fun-loving and free-spirited. I have vision and drive and lots of optimism – always ready to start a new creative project, go on an adventure or fight for a good cause. Except when I feel ill, and the pain is so bad I think I’ll die soon. I have an autoimmune disease that presents itself in a variety of illnesses and symptoms.

I’m not afraid of dying, I just want to live a long and healthy life like anyone else. I’m afraid of the pain getting worse, because it has been getting worse over the past 15 years. I’m afraid I won’t be able to endure the pain and other symptoms much longer. I’m afraid I won’t be around to experience grandchildren.

But I’m a fighter, always have been. About five years ago I was on disability, but I didn’t want to be. I worked hard to improve my health and get stronger. I did part-time work for a while and gradually started my own online business. I got off disability about two and a half years ago when I had made significant health improvements.

 

Unfortunately, this past year the symptoms of this disease have been the worst yet. Gradually, over the past nine months, the flares of fibromyalgia and the arthritic inflammation have increased in frequency and intensity. Because of weak muscles I fell down my front steps on Christmas Eve, badly spraining my ankle. During the winter, I was constantly dropping things – my hands just had no strength. I broke a toe during the spring, further decreasing my mobility. The pain and inflammation got so bad I couldn’t walk up a few steps, I couldn’t cook, bend over or push a vacuum cleaner. My legs and hips are always swollen and painful. Even now the pain wakes me up several times throughout the night, or prevents me from falling asleep at all.

So, yes, I’m afraid of continuing to live like this. It stops me from living normally. I had to turn down a job offer because I couldn’t do the tasks consistently. I may have to sell my home and move to a better climate, even though I don’t want to and can’t afford to. I’m afraid I may have to go back on disability, because it’s not enough money to live on. I don’t like being dependent on others.

I’ve had health problems since birth. I had colitis and food allergies as a child, as well as scoliosis. These things were small in my mind, minor inconveniences in an otherwise active and happy life.

I’m a creative and adventurous person; normally I’m not afraid to try anything new and fun. I’ve traveled the world and been involved in many types of charitable work. I’ve given birth to and raised three children who are now successful adults. Through it all, there were bouts of pain, illness and fatigue, but I thought that was normal – until 15 years ago when I was diagnosed with Hashimoto’s thyroiditis. It had gone undiagnosed for a long time and my thyroid levels were so low the doctor wondered how I was still alive.

The doctor said I could get better but I needed to be monitored closely for a while. She said it’s an autoimmune disease and other things might develop. I’ve always been into natural health, so I took responsibility for finding solutions. It was just another opportunity to learn and to improve myself.

Working at my health keeps me going. It gives me hope when I find something that helps me feel better. I’ve become an expert on wellness. I’m very strict about my diet, supplements and routines to maximize the health benefits. I’ve been to more specialists and alternative health practitioners than I can count. I’ve tried so many medicines and natural health remedies that I could write a book about it. I meditate, and when I’m not in pain I do yoga.

But nothing has helped during the past nine months and now I’m getting an ulcer from taking too many NSAIDs. I’m also feeling insecure about my future. Doing my online work has become difficult because sitting for long periods is as bad as standing all day. I need to keep moving at gentle intervals, and I need to reduce my workload.

I’m afraid the pain, muscle weakness, tiredness and brain fog will kill me. But I want to live, and get well, and do all the things I love to do. I want to work, I want to support myself, I want to travel and enjoy my family and friends. But I’m so exhausted that I don’t know if I can. It’s a terrible feeling to be gradually getting worse when you’re trying so hard to get better.

I’m still making plans and goals, but I’ve accepted a slower pace; I had no choice. I’m letting people know that I need help, and that I can’t do as much as I used to. I’m researching ways to live more efficiently by reducing cost of living and giving away anything I don’t really need. And I’m putting less pressure on myself by not overexerting on good days. I’m trying to enjoy the little things, like my pets and hobbies, while I still can.

I get depressed because of the relentless pain, the constant conflict of wanting to do more than I can and the insecurity about my future. But I don’t dwell on those thoughts, I focus on solutions instead. The depression is an undercurrent that’s not obvious to others, but it rears its ugly head when I’m alone on painful rainy days.

I do believe my life can still improve, but I must make some hard choices, like selling my home and moving away from family and long-time friends. It will be a new adventure with different challenges and opportunities to learn. Fortunately, that’s what I like about life: discovering new possibilities for living life to the fullest and not letting the fear or pain win.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Poike.


Find this story helpful? Share it with someone you care about.


Related to Fibromyalgia

emergency room entrance

Going to the Emergency Room When My Pain Is 'Too Much'

Fibromyalgia, joint hypermobility syndrome and chronic fatigue syndrome all cause some form of pain. However, for me, the worst of them is the pain I get from fibromyalgia. Most of the time when we are in pain we can take some paracetamol or ibuprofen and the pain dies down. Or if it is particularly bad, [...]
chronic pain chronicles newspaper article with photos of ottum yates and puja rios

Chronic Spotlight Series: A Conversation With Ottum Yates

When I get signs from the universe, I listen. Like if I can’t decide between watching “House of Cards” or “Game of Thrones,” then an image of Jason Momoa chopping down a tree pops up in my Facebook feed, GOT it is! That’s pretty much how the Chronic Spotlight Series came to be. Last month, [...]

Thank You to the High School That Has Accommodated My Disabilities

Dear Calabasas High School, Words cannot describe how lucky I am to have gotten the opportunity to attend CHS. When I was in eighth grade, I decided I wanted to go to a small, private high school. After a year and a half of attending that school, I realized how miserable I was. I did [...]
man and woman dressed up for a party

To My Significant Other: Thank You for Your Unwavering Support

You came into my life as things were crashing down all around me. As I was wandering through the stormy, starless night you arrived. As bright as a beacon, you were a lighthouse on calm shores. It was a very tumultuous and transitory period for me, and suddenly there you were. I got the sense [...]