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How scary my first diagnosis was
At first, I was told I had a muscle disease. How scary that was for me, I cannot put into words. I had three young children including a baby girl I wouldn’t be there for. All of the milestones I would miss, that thought brought tears to my eyes and broke my heart. Then the thought of the memories my children would have of me would be sick. Needing help to do everything and eventually leaving them. I started setting up other women who could be like a mother to them. Asking family members to help with certain things I wanted them to know.
So when I was told I actually have Fibromyalgia, I was relieved, to say the least. I knew it meant a lifetime of pain. How much and to what degree I did not know. Then you have the additional side effects, the ones no one tells you about.
The muscle pain is one thing but then you add the exhaustion, eyesight issues, migraines, sleeplessness, brain fog, nerve pain, joint pain, dizziness, active labor pains, and countless others. The list of side effects created by Fibromyalgia is truly endless. We are finding out new things about our personal FIbromyalgia every day. No two cases of Fibromyalgia are alike, something that helps me may not help you. The amount, degree or type of side effects are also all different.
Then you add in all the people, including most Doctors, who do not understand anything about Fibromyalgia. Which is understandable in some ways. Look at all of us having different side effects to different degrees and this medical problem is very confusing for anyone, including those of us who actually live with Fibromyalgia every day.
I have heard many comments from people with Fibromyalgia about their families leaving them behind. Can you imagine going through something that can keep you out of daily activities with others and then they leave you because of that? Many people have said that their family believes they are faking. Anyone who is of sane mind would not want to fake this illness. I am sure there are some people out there trying to use our illness to gain disability, they probably think it will be easy because Fibromyalgia is hard to detect visibly. But for those of us who are not lying, we all know we are telling the truth about our pain and daily difficulties. There are times when we just cannot get out of bed. Then you have the other days when it hurts to live our arms so we can brush our hair. My husband has had to wash my hair for me several times over the years. I am blessed to have that help.
The yo-yo effect of fibromyalgia
For most of us with Fibromyalgia, we have days when we can brush our hair and shower. Then we have what is called a flare-up or as some call it, a fibro flare and those are the days it is hard to get out of bed. For anyone who does not believe Fibromyalgia is real because we have some days better than others, you are wrong. We are in pain every single day of our lives. The only thing that makes certain days better than others is the degree of our pain is less on the better days. I have not been pain-free in seven years. There are many others who have had it much longer and most of us looking back can remember side effects earlier than when the daily pain started. But to us, it was normal because we had been dealing with the side effects mildly off and on for so long they felt normal.
Each day I find a way to live life, just like countless others I have talked to with Fibromyalgia. You just have to sometimes force yourself to smile (the fake smile we all know so well) and decide to be happy that day. With as much happiness as you can possibly muster This task may seem small but it is indeed a large accomplishment for us.
Why would you go around smiling all day when you have pain, brain fog or exhaustion hounding you? There are not many people who can achieve this great accomplishment. So just because someone you know who has Fibromyalgia is smiling that does not mean they are happy and everything is wonderful that day. It means they are trying to force their day into brightness.
How honest we should be
When most of us are asked how are we doing that day and we say good, it means, “At this moment my pain is manageable and I may be able to do something today.” Which is maybe a new way we should say it. Maybe if we said, “My pain is less right now but if you want to go out will you drive so I won’t have a flare-up?”
I would say this to the people who are a part of my understanding circle. Like my Husband or my Mother-in-Law. My own Mother and I would have to draw straws on who feels better than whom that day. We all need that circle of people we can trust. Those people who make us feel less abnormal than everyone else. We deserve just as much happiness as other do. Regardless of a visible illness or not. I am not less human because I have Fibromyalgia than you are. If we ended the judgment of others our whole world would be a better place to live. We need each other to build us when we fall and love us whether we are whole or chipped. Love is love, there is nothing better or greater than love.
My list of helpful favorites
As I go through life with Fibromyalgia I carry with me, my heating pad, melatonin (time release), GABA, light exercise and medicinal food. When I flare-up I choose to use a cleansing bath with Epsom Salt, Baking Soda,
and Lavender Oil. Plus I talk to people who know or at least try to understand what it is I am going through. These are the ways I have found that help me. What are some other ways you deal with your Fibromyalgia?
Please let us all know so maybe you can help someone else feel better today.
As always let me add, I am not a medical professional any advise or options expressed are not medical advice. These are my disclaimers.