Living with Fibromyalgia be Like a Lonely Journey

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A Life Not Fully Lived

Living with fibromyalgia and chronic pain can be a lonely journey. Even when you are surrounded by lots of people, it’s still a lonely journey. When you’re with “your people” it’s warm and inviting. But yet, you’re  trying your best to not give away your pain and discomfort. When you’re alone, you feel your pain and struggles, and know you will always live it. When you’re feeling “ok,” you push your limits, even though you know you shouldn’t.

When you’re feeling bad, you feel the pain and struggle and don’t know what to do. When you meet someone you haven’t seen for awhile, your heart races with joy but panic. You’re happy to see them but, you get the the “question” – “How are you?” You can’t find the right words to say. “Where are you working?” Or, “How’s your job?” Again, words fail you.

You don’t want to tip your hand, you don’t want to admit you’re not ok. If you tell someone you’re not working, of course they want to know why. However, how do you answer that without solicitation of a long drawn out explanation? And, answer without any follow up questions?! How do you make someone understand? I want to work, but, my body does not agree. My body says no! 

But the deeper problem being, tomorrow, I might feel “OK” enough to try to participate in life. Tomorrow my life may be manageable. So what do I do on manageable days? On those rare occasions, I might try to “catch up.” I’m going to try to catch up on things I’ve put on the back burner because my body just said no! But, the time I put into “catching up,” will catch up with me tomorrow. I will inevitably “pay” for it for at least a couple of days.  I want to live my life! I want to work! I want to enjoy my life and my family!

But, my life and my family are affected. They’re affected by pain, they’re affected by fatigue, they’re affected by physical limits. They are affected by fibromyalgia and chronic pain. My life now revolves around this condition that no one has an answer for. My life revolves around pain and fatigue. My life now revolves around my physical limitations. I will continue to try finding the simple joys in each day.

I will continue to try to celebrate the little victories that may seem small to everyone else. I will continue to fight the fight that can’t be won. I will continue to try to be me, the purest, most honest, most hardcore person I can be. My body may want to give up, but by God, my spirit never will! When you see me, you don’t see my Pain.

Also Read: To the husband whose wife has fibromyalgia and Chronic Illness

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What I have learned from Chronic Pain

When you are diagnosed with a chronic illness, life as you know it suddenly takes a new turn. You struggle to first accept this, and then you try to learn how to live with it. So many things in your life will be changing, things you once did without a second thought will require you to pull energy from a non-existing pool.

Making plans will now “depend on the day” and how you are feeling. Things you had every intention of doing will now have to wait. Your physical self will never be the same and this most certainly will take its toll on your mental health. You will go in and out of depressive states of mind, guilt, and feelings of worthlessness.

There are five stages of grief, most of us with a chronic pain condition with go through some, or all of these stages. My therapist told me one day that being diagnosed with a condition like this can cause a person to suffer grief, and therefore the stages of grief as well.

I’ll tackle that in a different article though. But all that being said, can a person learn anything from having a chronic illness? Here are a few things living with a chronic illness or chronic pain condition can teach us.

Patience:

From the day we suspected something was not right with us physically, we had to start looking for a doctor whom we could trust to help us seek some answers. As we all know, and have experienced, this is not an easy task. Many times people with chronic illness will see several doctors before finding one that takes us seriously and is willing to help us try to obtain some answers, or a least a direction to start going.

“Patience is a virtue,” well isn’t that the truth. As much as we want immediate answers, we all know full well that this is not going to happen. So we need to learn the lesson from the Tortoise and the Hare, slow and steady will win the race, well, maybe not win anything but that’s another story. Patience through this whole process will lead to better understanding and learning about what life will now be like for us and those we love. And most of all, we have to be patient with ourselves.

Understanding:

Once we have learned about this chronic condition, we can start to understand how this will affect our life. Things in our life will change and we need to learn and understand what our limits will now be. We need to understand how this will not only affect us, but, how this will also affect our family and those we are close to. Understanding a bigger picture of what lies ahead is important.

And most of all, understanding that life as we knew it will now be different and we must understand that we will have a “new normal” and we have to learn what life will now be and learn to live that “new normal.”

Acceptance:

When we finally receive a definitive diagnosis we are filled with fear, sadness, anger, and many other feelings, including relief. Someone has finally given us an answer for why we feel the way we do! Once we learn to accept this, and learn our new normal, we can learn how to adapt to this new life.

There is no set amount of time it takes to learn this acceptance piece, but once we are there, we can start moving forward and learning how this new life will go, accept our “new normal” and begin again.

Appreciation:

Every day used to be a good day. Now, good days are few and far between. We need to really appreciate the “good days” if/when they come, as well as appreciate little things that can make us smile each day. However, keep in mind the “understanding” piece of this is that you don’t want to overdo things on a good day because it will cost you later.

Appreciation of the time you are able to spend with family and enjoy whatever activities you can do with them, it’s priceless. Appreciate the hobbies/activities you may still be able to do to keep your mind off of your pain. Appreciate what you still have versus what you have lost.

Love:

It’s not that those of us who have chronic pain or a chronic illness don’t know, or feel love at all prior to this diagnosis, but now we have a different level of love, or should I say, different understanding of it. When someone you really love and care about can look into your eyes, when you are at your worst, and say “I understand, and wish I could do something to help you,” you know the depth of love and caring because it’s said without judgement.

There is no set number of things a person can learn while living this “new life,” but we can keep looking, looking for anything good or positive. This is much easier said than done and it is a process for sure, and believe me, I’m still trying to look for it each and every day. Certainly some days are easier than others to find some peacefulness or positivity but I will keep looking for it and enjoy it when I find it.

 

For support and Discussion join the group “Living with Fibromyalgia and Chronic Illness”

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