Please Don’t Stop Asking Me

Please Don’t Stop Asking Me

It’s so hard for people to understand how you can seemingly overnight, go from being active and busy, to being “anti-social.” Believe me when I say that it’s a very gradual and painful transition, fraught with many difficult adjustments.

It’s a shame that people stop asking us to do things because we’ve had to say no on occasion. We truly would rather say YES to spending time with others, doing things we mutually enjoy. We may have to cancel at the last minute due to a flare-up, increased fatigue or pain, little or no sleep, or brain-fog that keeps us drowning in the inability to focus. We truly do want to spend time with you.

Social isolation can be both lonely and depressing. It’s difficult to watch your family and friends carry on without you. It’s really difficult to have to say no when we want to say yes. So even if  we say no nine times in a row, please ask the tenth time. We may not be able to stay as long as we’d like or participate in the same way, but we still would love to be asked.

Some things I really enjoy when I’m able: playing miniature golf, going to a good movie, taking a walk along the beach, eating at a great seafood or Indian restaurant, going grocery shopping with my husband, playing a board game. What kinds of things do you like to do when you have the energy?

Last year I went with my husband to choose a Christmas tree at a local farm. The first real tree we’d had in years. We sat near an amazing fire pit while the gentleman wrapped our tree. It may seem like a simple thing, but it was a precious memory for me. I get very few of those, so I enjoy the moment and just breathe in the wonder, simplicity, and normalcy.

I also enjoy being asked to for an ice cream. My husband and I used to go get some great BBQ and sit in the car by the lake as we ate, I enjoyed those times. I enjoy sharing a good cup of coffee or tea with a friend. I enjoy a good phone conversation as long as it doesn’t last more than an hour or so.

I say all of that so that you will reach out to those who are chronically ill and offer them the simple, but priceless opportunity to do something special with them. Don’t give up on us.

Please don’t stop asking me.

 

Originally published on:

http://fibromyalgianewstoday.com/blog/2016/08/22/please-dont-stop-asking-me/

Painsomnia in Fibromyalgia 

Painsomnia in Fibromyalgia 

Painsomnia is when you are unable to sleep due to pain. Try to imagine if you have a really bad toothache that prevents you from sleeping, because no matter what you take for the pain, it’s just not touching it. Chronic pain can be like that, especially if you are in a flare. It’s no fun trying to distract yourself from the pain, knowing you have obligations the next day, but sleep is a distant memory.

Sleep deprivation wreaks havoc on your schedule, your plans, and becomes a vicious cycle. Pain causes you lack of sleep and lack of sleep increases your pain. If you have children who need you, you force yourself to push through, but inevitably pay a price for it. I am in awe of and deeply respect men and women who are parents and suffer with Painsomnia. My heart goes out to you.

My children are grown now, so I don’t worry about having to get up and fix breakfast, get them ready, and drive them to school and extra curricular activities. Being older and experiencing Painsomnia has its own challenges. I’ve never done well on less than 8 hours of sleep, so only getting 4 or less at a time, well let’s just say it ain’t pretty.

Have grace for yourself and trust what your body is telling you. It may be to slow down, it may be to drink a warm cup of chamomile tea, it may be to take a long bath with Epsom salts and lavender essential oil. No one understands your pain and inability to get good sleep like you do. Don’t be hard on yourself and don’t let others be hard on you.

Some things you can do to distract yourself on those incredibly hard nights: pray, read a good book, watch a funny movie, do some gentle yoga, chat with a fellow spoonie on social media who is also awake. I personally play games on my tablet or phone. Sometimes I find that a glass of wine helps. Find out what works for you on any given night, and do that.

Here’s to a pain-free good nights sleep!

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