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Ever since I can remember I’ve been sick. As early as 4, I cried every single day cause I was too tired to get up, I begged to be left in bed. I was in pain. Of course, everyone thought I was just being a spoiled brat. This lasted all the way through high school and my label changed to lazy. I missed so many sick days I almost didn’t graduate, this would become repetitive in my life.
By the time I turned 18 I knew something was wrong, I was sick.
Loades of tests came up negative, it must be in my head and would be prescribed antidepressants. The total body pain continued to get worse but it was blamed on my depression. I became a radiologic technician, barely graduating due to too many late and sick days.
My sister, who is four years older than I, was diagnosed with Scleroderma at the age of 22. Of course, I was tested, thank the Lord I didn’t have it. Not to be morbid but I was a little jealous of my sister, cause at least she knew what was wrong with her and had answers for her pain. She died at age 40.
Working in the hospital, I talked to everyone about my illness but the symptoms were so vague I was told that I would have to get a lot sicker to diagnose. So I pushed on in my own little hell. Then after 3 years, I was fired due to too many late and sick days, ironic! I began self-medicating just so I’d have the energy I needed to survive. I ended up in a private Dr’s office. He believed me and sent me to several different specialists, all which lead to more testing but no positive results.
One day I was reading JAMA, a popular medical magazine, and there it was – FIBROMYALGIA!!!!! All my symptoms matched, I was so excited until I found out there’s no way to prove it and worse still no treatment and most Dr’s don’t believe it exists! I was 24 and finally, my disease had a name, that was more important to me than I even knew. My boss put me on pain medication and a muscle relaxer. Then I got fired again due to, you guessed it, too many late and sick days. I was so defeated, it was hard to find the reason to keep living. I contemplated suicide many times over the next few years. I felt like a burden on my family, some of them still believed it was in my head. From then on I had to teach every Dr. I had about Fibro, most didn’t believe me. I thank God every day for Lyrica, it made life easier. I lost my career, no one wanted someone with my history. I’ve lost countless friends and family cause they don’t understand.
Now I’m 49 and basically homebound, leaving only for appointments and very special occasions. I’m still in constant pain. I have a lot of diagnoses: Migraines and daily headaches, endometriosis, TMJ, Severe IBS, CFS, Costochondritis, insomnia, degenerative disc disease with 3 ruptured discs in my neck (inoperable), chronic dry mucous membranes, Ebstein Barre syndrome, and of course Fibromyalgia. Short of a little stretching, I’m unable to exercise or move too much. I can barely handle being touched even by my husband. My Fibro fog is so bad I have to write everything down, even whether I took my meds or not. Most of the time I just can’t think straight, I only bathe once a week cause it takes everything I got for me to get through it. I always feel like I have something wrapped around my middle squeezing as hard as I can make my breathing difficult and I have Charley horses in all my muscles.
I am blessed though, I have a very sweet husband who has been with me from the start, he is my rock and now works all the time so I can stay home when he comes home a takes care of me and our home, I couldn’t ask for better! I had my life planned you know, good job, a good marriage, 2 kids, grandkids, an early retirement with enough income for travel and spoiling my grandkids. I never dreamed I would be housebound by the age of 40, too broke for anything and in too much pain to enjoy anything!
