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.

Chronic Illness Has Become My Uninvited Constant Companion

Chronic Illness Has Become My Uninvited Constant Companion
I usually prefer to choose the companions I want to do life with. Chronic illness is a companion I would never have chosen, and yet it has turned out to be a life changer.
It has become a teacher like no other. It has taught me to listen to my body and really pay attention to my limitations. If I don’t, the price I pay in flares and impossible-to-describe fatigue will do it for me. Like any good student, I want learn and understand, and get the best grade possible. In order to do that I need to come to class prepared. I need to have done my homework and really understood the subject at hand, which is my multi-faceted health.
It has increased my ability to be much more compassionate to the suffering of others. I used to be judgmental of others suffering at times, thinking “if only they did this….or that, they would get better.” Now I keep those opinions and unsolicited advice  to myself. Instead I choose to come alongside and just be there, however each person needs me to be. It’s what I want others to do for me. I read the Psalms now with a completely different perspective and a whole new appreciation for the suffering David endured.
It has given me time and space to just be myself. My authentic, real, messy self. It’s always around to remind me that life is not a beautiful package, wrapped in beautiful paper with ribbons and bows. It comes wrapped in plain brown paper with smudges and rips, and my name written in crayon. I no longer feel the need for nor have the energy to be perfectly packaged version of myself. I can just be myself. Sometimes I feel like a Charlie Brown tree, sometimes I feel like beautiful pine tree with beautiful, fragrant branches. No more pretense, just real, no matter what that looks like.
It has encouraged me to choose wisely how I spend my time. With limited energy and an unpredictable set of symptoms, I have to decide daily, sometimes hourly, how to choose what I will be capable of achieving. Some days I can go shopping and some days I can sit for an hour long Dr. appointment, but definitely not both in the same day. Some days I can go for a short walk, other days I struggle to get out of bed. Am I able to cook something for dinner or do I need to settle for chips and hummus. It’s a constant dance where my partner keeps changing the pace, and I have a hard time keeping up with the changes.

would never wish a chronic illness on anyone, but I’m thankful for the companion in my own life. It has smoothed out some really tough edges and mellowed my need to always be in control. It has brought me incredible friends I would never have otherwise met. In conclusion, I have to say, I’m actually thankful for this constant companion. 

Blessings,
Robin

7 Things That Blindsided Me

7 Things That Blindsided Me

Chronic illness is different for everyone who suffers from them, and yet the similarities are comforting. We have left the world of “normies” and have entered the world of “spoonies.” I have fibromyalgia and am hypothyroid. I also deal with some of their “friends” such as IBS, depression, weight gain, and fatigue.

 

7 things that blindsided me when I became ill

 

1. I was unprepared for the unrelenting fatigue.

 

I was used to moving furniture around, taking my kids places,  cooking, and cleaning my home. Chronic, unrelenting fatigue put an end to all of that. We live in a small home now where the furniture pretty much stays where it was originally put. My children are grown and out on their own. My husband does the cooking and we recently hired someone to do the cleaning. I just want to clarify that fatigue is not the same as being tired. When you’re tired, getting a nap or a good nights sleep, and you’re reenergized. With fatigue, no matter how much sleep you get, there is no relief.

 

2. I did not anticipate the loneliness

 

I was used to a busy household with teenagers coming and going, the noise, and the comfort all of that brought to this mama. Now that it’s just my hubby and me, well it gets really lonely for me and way too quiet when he’s at work. Friends are too busy with their own lives, and I understand that. They may think people come and hang out with me, but the truth is they don’t. I’m so thankful for my sister who comes and hangs out with me at least once a month.

 

3. Shopping has become an endurance sport

 

I always loved shopping, especially grocery shopping. Now on the days when I feel good enough to accompany my husband, I usually have to go out to the car to sit while he pays. My energy has once again been depleted. It can take hours and sometimes days to recuperate from a 30 minute shopping trip. I’m so thankful that my husband lovingly steps in and does what I can no longer do.

 

4. Showering needs perfect timing

 

I need to take a shower (when I’m able) at night because it totally wipes me out. For most people, taking a shower wakes them up and energizes them. For me, it’s just the opposite. I become more exhausted.

 

5. An unmet need for community

 

I praise God for the gift of social media. It has connected me to a community of amazing women who also have chronic illness. It’s a community of mutual suffering, understanding, and compassion. Belonging to and facilitating groups on Facebook has given me an important lifeline of connection.

 

6. It lies to me

 

Most of the time I’m very aware of how ill I am, but on those good days I find I question it. Am I really sick? Do I really have what they say I have? Maybe I’m getting better! Then the weather changes or stress enters the picture and once again I’m reminded of the truth. I truly am sick. But I’m SO thankful for those good days.

 

7. Advice that’s not helpful

 

I know most people come from a place of caring when they make suggestions or give advice. But it’s usually not helpful, and can make me feel worse. Such as: maybe if you change the way you eat, exercise more, get out of the house more, get a job, you’ll feel better. They also want to know if you’re feeling better yet, not understanding that “chronic” means lifelong. It’s better to seek to understand than to give unsolicited advice.

 

I travel this road of chronic illness with fibromyalgia and hypothyroidism in my backpack.  My map for this journey is prayer and good books. My sustenance are the friendships I make along the way. I have been strengthened and challenged in ways I never could have anticipated.

 

My name is Robin and I have been chronically ill for awhile, although I was only diagnosed about 6 years ago. I have a Facebook group and website called In Spite of My Illness. I am on multiple social media platforms as @RobinRisesUp. My email address is: inspiteofmyillness@gmail.com

 

 

Robin

How’s your marriage?

How’s your marriage?

Chronic illness adds challenges to marriage that can draw you closer together or cause you to become more distant.  The type of illness you have and the level of support you have from your spouse really makes a difference.

My husband and I have been married for 26 years but I’ve only really dealt with chronic illness for the past 7 to 10 years.  I’m thankful that it was a gradual thing so that my husband and I could both begin to adjust and adapt to it. But no matter whether it is gradual or comes upon you suddenly it’s never easy.  In the beginning my husband had a difficult time understanding my symptoms and my limitations.  It took him being out of work for several months and watching me daily, to really begin to understand.

I don’t know if you’ve ever read the book, “the five love languages” by Gary Chapman, but my husband’s primary love language is acts of service, which has truly benefited me.  He has an incredible servants heart.  I truly appreciate all that he does for me, and I have to be careful about not falling into a pattern of letting him do things for me that I should be doing myself.

A while ago we had a conversation about how we perceive each other in this season of our marriage.  I felt that he was treating me more like a patient then a wife, and he felt like I was treating him more like a maid than a husband.  I think as a result of that conversation we are more  conscious of how we treat one another.  But  we by no means have this all figured out.  I think the important thing here is to just continue having conversations.

One thing I struggle with is loneliness because I am home all day and have very few people who stop by.  At least my husband gets to go to work and has interaction there.  I understand that people have busy lives with their own children and activities.  I have to say that I’m very thankful that one of my sisters lives not too far away and we try to get together at least once a month to spend the day together, just drinking tea and giving in to our silly side.

My family and friends who know me understand when I say, after visiting for a couple of hours, that I REALLY need to go lay down.  Often times they’ll bring chairs into my bedroom and will continue hanging out in there, which tells me loud and clear how much they truly love and accept me, even if they don’t totally understand what I’m going through.

But it is stressful and it does take a toll on your marriage.  I recently discovered a book called “praying for your husband from head to toe” by Sharon Jaynes and it is changing MY heart, even as I begin to see a transformation in my husband.  My goal is not to change my husband, but to just bring him before the Lord every day and seek the Lords best for him.  I strive to be the best wife that I can possibly be in spite of my illness.

 

Thanks for hanging out with me,

Robin

 

 

Why am I not Healed?

Why am I not Healed?

Believe me, I understand if you’ve been praying or had people praying for you and over you and yet you are not healed. I am not a theologian but I’ve been a follower of Jesus for over 40 years, and one thing I’ve learned is that His ways are higher than my ways. 

I don’t need to understand why God chose me to travel this path, I trust Him and His plans for my life as I seek to live a purpose driven life. Maybe He chose this for me so that we could be friends. Maybe He chose this for me because He wanted me to have a voice in this arena of chronic illness. 

I have learned to see EVERYTHING from the hand of God as a gift chosen and wrapped specifically for me. This illness is no exception. Without it I would have continued to be self reliant and would have missed out on meeting my house cleaner, who has become a dear friend. I would not have met the incredible women I have met who are in this battle with me. 

We live in a fallen world and although I absolutely believe God CAN heal me, He may not choose that for me right now. I still have things to do and amazing people to meet. 

I pray this has been helpful for you 💜

blessings, hugs, and spoons,

Robin


In Spite of My Illness

 

Grieving The Loss of Who You Were

Grieving The Loss of Who You Were

I think one of the hardest things about chronic illness is giving yourself permission to grieve the person you were.  You lose a lot of things when you become chronically ill.  You lose the energy that you used to have to do common every day things.  You lose the feeling of what it was like NOT to be in pain every day.  You lose the ability to get a good and restful nights sleep.  You lose friends because they just don’t understand and they stop coming around after awhile.  There are so many other losses, just fill in the blank with what you’ve lost.

It’s hard to let go of the life that you used to live.  I know for a lot of us it’s difficult doing simple things like taking a shower without getting completely exhausted.  We often don’t have the strength or energy to cook meals or to clean our home.  Some of us with young children don’t have the energy to play with them like we used to.

If married, we also grieve the relationship that we used to have with our spouse.  Instead of being romantic, our relationship sometimes turns into that of a patient and caretaker.

Some of the things that I grieve personally are: not having the energy to do everything I want to get done in a day,  being able to drive somewhere without getting completely exhausted,  being able to spend time doing fun things like minigolf or going for long walks,  being able to have company over for more than three hours without having to lay down,  being able to go grocery shopping,  not feeling like I was a burden,  being able to drive seven hours up to Maine to visit my family.

What are the things that you used to be able to do that you’re no longer able to do? How does that make you feel?  Have you taken the time to grieve the things that you have lost because of your chronic illness?

Feel free to share this with anyone you know that could benefit from having some support and encouragement, and someone to come alongside them in this very unpredictable journey.

 

In spite of my illness,

Robin