It’s not so much that people seem to always say the wrong thing, it’s that they don’t know what to say. And so they end up saying, or doing, nothing at all. Which is hurtful.
“If I share something difficult with you, I’d rather you say, ‘I don’t even know what to say right now, I’m just so glad you told me.’
Because the truth is, rarely can a response make something better. What makes something better is connection.”
—From “The Power of Vulnerability” by Dr Brené Brown
…you have lost the part of yourself that you loved most. The last period has been stamped onto the page, and yet somehow you were left behind, running your fingertips over a leather bound cover slammed shut. You are a character in a story that is over, and since this never happens in the fairy tales you were fed in your most formative years, you are lost. You no longer fit in the world, and there is no star that can grant your truest wish.
~Five Lies You Were Told About Grief by Alison Nappi
I lurv Kid President. Enjoy this video, “An Open Letter to Moms”.
On October 15, 2013, I was diagnosed with fibromyalgia syndrome (FMS).
I am writing this as part of my healing process. I have not talked much about the pain or my diagnosis to my family and friends; and most people I know are not aware of what my body and mind has been through in the past 12 months. I became withdrawn. I put on a mask to disguise what was happening to me. I had to; otherwise I would have fallen apart. But hiding is not who I am. The essence of me is emotional, engaging, honest, unveiled. I want to be vulnerable again. I *need* to be. It has taken me nearly a year to realize this.
I think people are afraid to ask me what it’s like to have chronic pain. Or maybe they just don’t want to know. People don’t know what to say, or how to offer support. So they often don’t say anything at all. Like many diseases, fibromyalgia is a vast and endless sea of loneliness for the sufferer.
My hope and intention is that by writing and sharing about my life and FMS, I will repair the emotional damage. I think that I know why I have FMS, and I will explore these reasons in future posts. First I have to tell some the story of the past year.
The pain started in early December of 2012 with a stinging sensation in my left ankle that radiated up the side of my leg. I didn’t think much of it of course, and in a few weeks it dissipated. On Christmas Eve my right arm was sore and heavy for no apparent reason. Little things like that started happening. By mid-January, I was having electrical shocks in my arms, hands and legs, muscle twitching and an overall feeling of malaise. My GP ordered blood tests and everything was normal. No signs of an autoimmune disease, arthritis, inflammation, vitamin deficiency. Nothing.
The sequence of events in late winter and in early spring and summer are hazy. The short version is that my body was in agonizing pain, work was busy and stressful, I didn’t know what was wrong with me, and something happened that was emotionally traumatic. Looking back, I just want to cry. It was a really difficult time. All of *my self* was in distress and I felt quite alone in my pain and despair. I have no idea how I endured.
The pain is cyclical. By late spring I had noted a pattern of three to four weeks of pain, which started mildly and grew in intensity, then would taper off and then I would feel okay for a few weeks. Every time the pain disappeared, I would think, hey maybe this is just stress and it’s in my head. But it kept coming back, and every time there would be different and new symptoms.
In the beginning my hands and arms swelled a lot and would tingle with numbness. I would wake up in the middle of the night with pins and needles in my arms and legs. My legs would ache and throb and spasm. Pin pricks, razor blades, bee stings, knife stabs. I felt really, really sore all the time. My arms were pinched and tight. Quality sleep became non-existent. I would awake all throughout the night and in the morning it felt as though I had slept on rocks. For a few weeks I had excruciating nerve pain in my lower back that radiated to the front of my thigh. I thought something must be wrong in my spine. Pinched nerve? Bone spurs? Spondylosis? Spine cancer?
In late spring my neck and upper back began to feel tight and sore. After my third chiropractic appointment, the pain was devastating me — it was the worst pain I have ever experienced. That neck pain has been persistent for months on end. It’s agonizing. I can’t even describe it.
Then there is the “voodoo pain”, which feels like sharp metal objects being stabbed into various spots all over my body. I have the sensation of my skin being burnt. Many days it feels like I’m coming down with the flu and every muscle is sore. It hurts to stretch. It hurts to do yoga. It hurts to sit. It hurts to hold my arms up. It hurts to sleep. I’m often fatigued and my sleep is not refreshing. Pain, noise…everything is amplified and irritating. I cry a lot because my body hurts so much. Simple tasks are sometimes impossible.
Fatigue is prevalent. I tire easily when walking up stairs, and when the fibro-flare is peaking, I can barely get out of bed. Showering, dressing, and drying my hair can be a monumental undertaking that is more like a medieval crusade and less like the everyday routine it is.
I have tried acupuncture, chiropractic care, massage therapy, physio, a multitude of meds and vitamins, epsom salt baths. Nothing ever helps for more than 24 hours at the most.
I had an MRI scan of my brain and cat scan of my lumbar. Both came back normal. I saw a neurologist, who said my symptoms were not related to any kind of nerve disease or disorder. I had more blood tests. All normal. A physiatrist found nothing immediately wrong with my neck and back and said that even though she did not deal with musculoskeletal conditions, she seemed certain that I had FMS. It was only at that point that I began to consider this as a real possibility. I had sort of ruled it after all of my research.
I don’t have many of the common symptoms of FMS. I don’t suffer from digestive disturbances or TMJ or “fibro fog”. I’m not depressed. I’ve been able to soldier through it and continue working full-time. And nothing unordinary triggered the onset of the condition, which is often the case.
My GP had referred me to a rheumatologist. I waited five months for an appointment that lasted 20 minutes. By the time of my appointment, I was certain what he would say. FMS was making more and more sense. He confirmed what my GP had suspected all along.
Having someone tell you that your pain is real and it has a name is the weirdest feeling. It’s devastating…and it’s relieving at the same time. The part that is hard to come to terms with is that FMS is diagnosed by the elimination of any other diseases and by having pain in 11 of the 18 “tender points”. So the natural response is, could this really be what is wrong with me? But, I will take it because it really doesn’t seem like it could be anything else. And with a diagnosis comes the ability to manage it and maybe the chance to cure it.
From all that I have read online, it seems that the most common symptom for sufferers of fibromyalgia syndrome is basically widespread body pain — and each person describes it a little differently. I think this is because the pain doesn’t always feel exactly like something else others can relate to. It’s not always “sore” or “stabbing” or “burning”. It moves around the body and it changes in intensity from day to day. The pain mutates, travels and shifts with no apparent schedule. You can’t know where it will go next, or when it will recede. There are patterns, but they are learned with time; I am only beginning to understand my own.
This pain sucks away my motivation and it paralyzes my intentions and it is rapidly transforming my life.
And now it’s up to me — because I am the only one who can determine HOW this pain will change my life. I can take but one road.
If you would like to read more about FMS, this article on the University of Maryland Medical Centre is quite thorough but succinct.
She didn’t like to be talked about. Equally, she didn’t like not to be talked about, when the high-minded chatter rushed on as though she was not there. There was no pleasing her, in fact. She had the grace, even at eleven, to know there was no pleasing her. She thought a lot, analytically, about other people’s feelings, and had only just begun to realize that this was not usual, and not reciprocated.
~From A.S. Byatt’s The Children’s Book