But You Don’t Look Sick

But You Don’t Look Sick

Boy, if we had a nickel for every time we heard this, we would be wealthy! This is why they call fibromyalgia an invisible illness, because looking from the outside only, you can’t always tell. Our smile hides our pain so often.

What DOES sick look like? Well, we are used to sick people LOOKING sick…pale, thin, lethargic. We look like that a lot of time too, but you’ll probably never see it. A little makeup, a lot of grit and determination, and we look pretty good on the outside. We tend to push ourselves and most of the time people only see us when we’re feeling pretty good, otherwise we are hiding at home.

It’s like a woman who is pregnant. She may not look pregnant, but there are changes going on in her body and she senses them and finds them hard to describe at times. She is frequently tired and nauseas, smells really bother her and her moods can be all over the place. Most of our symptoms are also hidden and not apparent to the people around us. We experience varying degrees of pain, mood shifts, indescribable fatigue, and unrefreshed sleep, just to mention a few.

I have to psych myself up when I go out. I put on some makeup, fix my hair, and basically just suck it up. Most of the time unless you really knew me, you might think I was tired, but I would not look sick to you. That’s the magic of our public persona. We put a lot of effort to appear “normal” when we are out and about or on the job.

Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless others are touched by a chronic illness, they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams, and it really makes us feel isolated.

Fibromyalgia is known as an “invisible disease.” You can’t see brain fog, digestive issues, muscle weakness, sensitivity to light, noise, and odors. But they are part of our new normal and while we may not look sick, we absolutely know that we are.

It’s time to redefine what sick looks like.

Leaving Martha and Becoming Mary

Leaving Martha and Becoming Mary

I am a born-again, redeemed woman of God, and for that I make no apologies.  Although I’ve been a Christian for over 45 years, and since I’ve become chronically ill I have truly begun to learn what it means to follow him. I was always a person that was busy, busy with cleaning my house, cooking and trying to make my life “perfect”. I was raising 3 children, taking in unwed mom’s and foreign exchange students. My marriage was very rocky for years. But I am a much gentler, more compassionate version of myself since my diagnoses. It is my hope that you will be encouraged by my posts.

I spend more time in the Word and in prayer since I’m mostly bed bound due to the severe fatigue. I bid a fond farewell to Martha as I embrace the Mary that Jesus is calling me to be.

What it’s Like to be Married with Fibromyalgia

What it’s Like to be Married with Fibromyalgia

Marriage is hard under the best of circumstances. Throw a chronic illness like fibromyalgia into the mix, and well, let’s just say that things get interesting.

It’s hard not to take on the roles of patient and caregiver. Those are certainly roles that have become a piece of your relationship, but don’t let it become the defining piece. You both need to continue to be lovers, friends, and companions.

It’s so important to be honest in your relationship. Talk about your frustrations with your limitations, your pain, your desire to be who you used to be, and the person you’re hoping to become. Your spouse needs to talk about their frustrations with your neediness at times, your inability to engage in previously enjoyed activities, and their physical and emotional needs.

Keep in mind that when there is stress in your marriage, it will affect your health, causing more pain and flare-ups of symptoms. Do your best to resolve your issues sooner rather than later. Communication is so important. If it’s hard for you to say, write it down instead. Whatever works for you. Seek counseling if you need it.

Pain and fatigue can become consuming, making your world much smaller than you ever imagined. Help your spouse understand by sharing word pictures that describe your symptoms and let them know that you are equally disappointed that you can no longer do some of those mutually enjoyed activities. Tell them to never stop asking, because when you feel well enough, you will absolutely say YES.

For some, I know the stress of chronic illness tears at the fabric of their marriage, rendering it unfixable and utterly, irreparably broken. It takes a spouse who is willing to be less selfish and more serving to keep their marriage not only intact, but growing richer as well. Remember your vows you spoke to each other, including for better or worse, in sickness and in health.

When you vowed for better or worse, you could not have anticipated having fibromyalgia and all the limitations it puts on your life. But this is the hand you have been dealt, play it to the best of your ability….together.

How the Weather Affects my Pain

How the Weather Affects my Pain

The cold, the rain, the humidity, snow, and basically any change in the weather will affect my pain. Let’s break it down a bit. Since I live in the Northeast, I experience a lot of different weather. The heat and humidity of Summer, the cooler, damper weather of Fall, the incredible cold of Winter, and the amazing season called Spring.

Since it’s summer currently, I’ll start there. In order to escape the hot and humid weather, I try to stay in an air conditioned space. For me, the majority of that time is in my bedroom. If the air is too cold my legs and hips experience increased pain. So, I’m constantly adjusting the temperature to minimize the pain. If it’s too warm, I will tend to feel weaker and nauseas. It’s a constant battle.

When it rains, or even if it’s just cloudy and the air is more moist, it increases my pain all over. At times, this forces me to take pain meds, but I work hard to avoid them when possible. I love the sound and smell of rain, but my body rebels. That’s when the heating pads come out.

I absolutely love the first snow of the season! It’s beautiful and so sparkly white. My pain level soars in the cold and dampness of winter. It can become a deterrent and distraction from the things I want/need to do. Warm blankets and heating pads become my constant companions. It can be so frustrating not enjoying the beauty of winter due to the distraction of pain.

I really enjoy watching a good thunder and lightening storm…it’s magical and dangerous at the same time. The pain it causes reminds me of having the flu and every area of your body hurts. If you’ve ever experienced all over pain due to fever or illness, multiply that pain by about 5 and you’ll come close to the pain I experience.

Pain robs me of the simple pleasure of just enjoying all the various seasons.

My hope is that this helps friends and caregivers have a greater understanding, and my fellow spoonies traveling with me will know I’m privileged to be a voice for you.