I met Simona Rinfreschi through the World Moms Blog community, and it quickly became apparent that we had a lot in common. We share many character traits and have had similar life experiences, and there is a good possibility that our paths crossed over twenty years ago when we both attended the same university, majoring in the same subject. As I’ve gotten to know Simona, she has shared with me some of her medical challenges, and she has graciously agreed to write a guest post for me today.
Isn’t it dreadful that, recently, I found myself praying that they would find something wrong with me?
I can see you shaking your heads. Why on earth would you want an abnormal blood test result? In my case, it’s simply because I’ve been battling severe pain and fatigue for 8 years already and so far nobody has really been able to help me!
My symptoms, combined with an absence of positive test results,has led to a diagnosis of Fibromyalgia. The medical dictionary definition of Fibromyalgia is: ” a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is often complicated by mood and anxiety disorders.”
I’ve encountered two main types of medical professionals so far, those who think that Fibromyalgia doesn’t really exist and is a psychosomatic manifestation of my clinical depression,
(Definition of psychosomatic:
1. Of or relating to a disorder having physical symptoms but originating from mental or emotional causes.
2. Relating to or concerned with the influence of the mind on the body, and the body on the mind, especially with respect to disease)
and those who are happy to have given me a “diagnosis” even if they have no clue how to help me!
I actually find myself getting angry when they tell me I’m depressed, because I’m actually not depressed right now! I did go through severe episodes of clinical depression as a teen and young woman, as well as post-partum depression following the birth of my son. That’s how I know that this pain and fatigue is not caused by depression! I can remember quite clearly how I felt when I was depressed and I don’t feel at all like that now!
Ironically, psychologically, I’ve never been better! Around 3 years ago I was hospitalised for 4 weeks in a psychiatric hospital. There I learnt how to get out of the pit of depression once and for all!
In the last 8 years I have spent a small fortune on medicines, blood & other diagnostic tests, alternative therapies, supplements and consultations with a wide array of “specialists” including 2 psychiatrists, all to no avail!
I now find myself with a dilemma. Do I simply accept that I have to live with this pain and fatigue for the rest of my life, or do I keep fighting and searching for a way to feel better?
Depending on the kind of day I’m having, I’m either willing to keep searching or I tell myself that it is what it is, and leave it at that!
So, this is how I’m dealing with my Fibromyalgia at the moment:
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I’ve come off most of my chronic meds (under medical supervision) because (since they weren’t really helping) I thought I’d save myself some money!
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I’ve sent my medical records to yet another doctor for review, because it is possible to have Fibromyalgia and something else too!
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I focus every day on all the things that I am grateful for
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I do my best to listen to my body and eat what I feel I need to, rest whenever I can etc.
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Ensure I have a good laugh at least a couple of times a day (luckily I have an amazing family & friends with a great sense of humour to help me with that!)
Like everything else in life, the diagnosis of a chronic disease or disorder per se isn’t what counts. What counts is how you choose to live with it. I know a couple of Fibromyalgia sufferers who don’t work at all and who are all “woe is me”. I’d rather laugh … and have my friends and family laugh right along with me!
Do you suffer from a disease or disorder which makes you appear perfectly healthy even though you’re not? How do you deal with the fact that you get accused of being “lazy” or “faking” it because people can’t see the pain you’re in?
This is an original guest post by Mamma Simona (a regular contributor to World Moms Blog) who is the proud mom of two terrific teens. She also shares her Cape Town home with a super supportive husband, 2 cats and 2 dogs. For more of Simona’s most intimate and candid thoughts, feel free to check out her alter ego, Phoenix, at www.blogbythephoenix.com
(Photo credit: Simona Rinfreschi)
