My Secret

Not so much an inspirational post, just some of my thoughts that I think you might relate to. Love and prayers to you!

Having chronic fatigue syndrome and fibromyalgia has been a very private journey for me. Of course, my family and close friends know of my illness, but for the most part a large portion of the people I know and interact with on a weekly basis have no idea. (Well, at least until I started this blog! ) I choose it to be this way. Writing this blog has been the most vulnerable I have been about it EVER. I really don’t mind opening up to complete strangers about my personal journey because I know that the majority of people reading this know exactly what I am talking about and totally understand! It’s comforting to know that there is a community of people who will accept my illness without any judgement. That’s part of the reason I started this blog. I know there are others like me, who suffer, but also have their faith to help sustain them through the hard times. I wanted a way to find those people and share in the journey together.

So, I often wonder why I feel so secretive about this fibro/cfs? I mean if I had cancer or multiple sclerosis or something like that, I don’t think I would have any trouble sharing that with people. So, I’ve taken the time to evaluate my feelings and here are my thoughts. I hope you can relate.

I don’t like being vulnerable. Who does really? I started my illness with doctors telling me that it was basically all in my head. That I had depression. That my symptoms were not real. Perhaps they were doing all that they knew to do, but they were wrong. Hearing that what you experience is perhaps a facet of your imagination is very hurtful. The symptoms are so real and can be very debilitating. How could I have made that up in my head? Little was known of fibromyalgia and cfs back in 1996 and although they’ve made huge strides in the medical community, there still seems to be a stigma among physicians about these syndromes. Terribly misunderstood. I still live in fear of the judgement, even today. It’s hurtful.

I have a wonderfully supportive family. I feel open enough to tell them anything and everything about my illness without any fear of judgement. Not that there is always understanding, but there is always compassion. I choose not to tell friends/acquaintances of my illness for many reasons, but a big one is still the fear of judgement. Perhaps, not to my face, but in their thoughts. It leaves me open to misunderstanding and hurt feelings. So, I have kept my journey private, I guess to protect myself. Anyone else live that way?

Another reason, is that this syndrome is so unpredictable. It changes daily, sometimes hourly, I find it hard to keep everyone updated. I mentioned this in one of my earliest blogs Compassion. I don’t expect other people, even those close to me, to be able to keep up with which symptoms pop up on which days. How often and how severe. I can hardly keep up the ever changing status of my illness, I certainly don’t expect other people to. And I don’t expect them to understand it either. I’ve mentioned this before, but if I am feeling bad enough that I can’t get off the couch then I let husband and kids know that and ask for some help during those times. If I were to dump the symptom list on them at any given time it might go something like this:

Well, my head feels heavy, the muscles in my neck feel like guitar strings, my shoulders are burning and feel like someone has beaten me with a club, my hips and glutes hurt so bad that sitting or lying down is very uncomfortable, but all I want to do is lie down, my joints ache like I have the flu, the fatigue is so bad that I feel like I need a blood transfusion, I can’t think straight, I’m nauseous and have no appetite, I feel like I might pass out, my arms tingle and are slightly numb, and I’m a little dizzy. Did you get all that? Because if you didn’t get it all, I am sure I will feel like this again tomorrow and could go over it all again.

Sound familiar? Don’t get me wrong, it is a wonderful thing to educate people and to communicate with loved ones. But in my case, after 16 years, it just gets old. I just want them to know that I don’t feel well today and hopefully that will change by tomorrow. Love me anyway and help me if you can.

A few people have found out about my illness from this blog or just through conversation and the most common response is, “ I had no idea.” Well, I guess I hide it well. The point is, if I am feeling bad, I stay home. You won’t see me. And if I am out and about and I feel bad, I usually will fake it until I can get home and in the bed. That’s just the way I prefer to roll. It is somewhat of a survival mechanism for me. Can anyone relate to this? or am I the only one who chooses this way of thinking? I am blessed that I don’t have to report to an employer everyday.  I suppose I couldn’t keep much of a secret while attempting to work full time. I don’t even know how that would be possible. And I know some of you reading this are doing just that. Difficult.

Some people choose to make it their mission to create Fibromyalgia awareness. I get this and I don’t disagree with it, but I am not there yet. People need to be educated on these syndromes. To create awareness, if only to create more compassion and understanding. But all of that takes vulnerability and trust. Many of us, including myself, don’t have the energy for that kind of vulnerability. I applaud those who do. I feel like I am doing my part by writing to those of you who understand. Creating encouragement. And in that process, I am being vulnerable. That is a step for me. I am happy to share my journey with others who have it. To be vulnerable to help others be comforted and feel less lonely. This has been a mission of sorts. And it has helped tremendously in my understanding of the workings of these syndromes and my emotional response to it. No secrets here! 🙂 Thanks for coming along for the ride and listening to me!

Love and Blessings to all of you,
Ann

Let me know your thoughts about the secrecy part of fibro.  Do you feel free to share your illness with the people in your life?  or do you feel judged? Do you feel like it is your responsibility to help educate others about fibromyalgia or cfs? or do you just keep quiet, like me?  I would love to know!

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Comfort and Compassion

My Inspiration:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
II Corinthians 1:3-4 

My Thoughts:

Comfort and Compassion. Father of Compassion. God of all Comfort.

God understands the human need for comfort and compassion. Not only is He omniscient, but we were made in His image.  He is the author of comfort and compassion.  So many times in my life, I have seen Him as the giver of these things. To me and to others. And in turn because we understand this human need and are the blessed recipients, we are then able to share these gifts with others.

I have experienced the comfort of my Lord countless times throughout the 16 year journey of fibromyalgia and cfs. In times of discouragement and despair. In times of emotional hurt and physical pain. In times of depression. In times of overwhelming fatigue. Knowing He is there, listening and caring for me, brings peace.

The words of God comfort me. I love to surround myself with His words of promise. For even though He has chosen me to walk through the hardship of chronic illness, His promise to be with me brings comfort. The New Testament is filled with examples where Jesus offers comfort to hurting people. From healing the sick to feeding the hungry, Jesus set a wonderful example for us. He knew how to comfort people. And meditating on His words of comfort for others offers comfort to me. He is a loving and compassionate Saviour!

Matthew 14:13-14
When Jesus heard what had happened, he withdrew by boat privately to a solitary place. Hearing of this, the crowds followed him on foot from the towns. When Jesus landed and saw a large crowd, he had compassion on them and healed their sick.
And then He went on to feed them because they were hungry. Compassion for the hungry. Comfort for the sick and hurting.

I have been blessed to receive comfort from family and friends through difficult times. Sometimes, God uses people to comfort us. Comfort from God, through friends. Love that. It’s like a double hug! Not to say there aren’t times when we feel lonely and afraid, but in those times if we will cling to His Words and trust, His comfort will abound.

My dad had quadruple bypass surgery last week. It was sudden and surprising. It was a time full of anxiety and fear, for all of us. I was blessed to be the recipient of comfort last week. So many people outpouring their love, thoughts and prayers to my dad and to us, his family. It is a wonderful thing to be a part of the body of Christ. Jesus set the example and so many have followed with compassion. By offering comfort to the hurting.

Dad is on the road to recovery. It will be slow and long. We are praying for no complications. Thank you to those who have asked about him and have been praying for him. Keep it up!  And many thanks to those who have lived out the mission of comfort and compassion to our family.

Many Blessings,
Ann 🙂

Is there a specific moment where you remember you felt the comfort of God? or were overwhelmed by the compassion of a friend? Share your encouraging stories with us!

Compassion

My Inspiration:

I Peter 3:8-9

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing… (NIV)

My Thoughts:

There seems to be a common thread among all the CFS and fibromyalgia blogs, articles, support pages and Facebook groups. Aside from all the common symptoms we experience, a lot of people are talking about the lack of support, understanding, and sympathy from the people in our lives. So, why do you think that so many people have a hard time accepting our illness for what it is? I have some theories:

1. We don’t look sick.   I am a girly, girl. I am the type who never leaves the house without make-up. I used to always do my hair too, but since motherhood happened, I now am quite fond of the ponytail and consider it a decent hairstyle. So, when I show up at church, school functions, and even the grocery store, you will most likely find me “put together”. Illness or not, I enjoy “looking good” and that is something that did not get lost with CFS/FMS. I imagine a lot of you are the same way. Continue reading