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

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