The Songs I Sing

Music ~ Be There For You

Music ~ Be There For You (Photo credit: Daniel CJ Lee)

I have written songs in my dreams for many years. I don’t write songs every night, but once in a while I write the lyrics in my sleep, beautiful words are strung together that blend into a harmonious chorus. Upon wakening, I forget everything. It’s time to take out the notepad and put it right next to me for these times, to try to force myself to remember my dreams and to remember the words to a song that needs to be sung.

Consciously, I don’t know what the songs are about although anything that has to do with me must have love in it and probably conflict too. They generally go together, don’t they? Love spreading it’s wings, love in nature too: the ocean’s symbol for how unpredictable life can be, the sun, darkness, tragedies, the magic of birth, love, that unite us all.  It only takes one lit candle to give light to another. When I was young I thought the world was a friendly place, united and peaceful but I have given up hope. I’m not innocent anymore; I’ve seen too many senseless tragedies to believe that the world is good, too many jaded memories, too many senseless killings.

Physically, my body aches, I can tell when I have a fever when my legs hurt and my skin is sensitive. The throbbing in my head has been constant, aspirin and allergy pills have done nothing. My dog is having a barking competition with the dog next door and that is making my head ache even more. Music, which always soothes me, doesn’t help, even on the lowest volume so I turn it off and lay flat on the bed. My blankets cover me, I try to close my eyes but my arms shake and there is something uncomfortable about me, an illness I cannot define.  Is it Fibromyalgia? Is it a virus? Is it a reaction to the flu shot? Is it my auto immune disease, Hashimoto’s Thyroiditis? Whatever it is when will it go away?

It turns out it takes the better part of the week but it is leaving my body now and for that I am grateful.  I realize, however, that I am saddled with two difficult diseases that make anything hard to live with and to diagnose. Sorry, I don’t mean to be disrespectful but that part alone sucks. I try not to dwell on the chronic illnesses they just pop up in situations like these, I know I have to live with them, co-exist, not in peace but in acceptance.

I look around my bedroom and I feel uneasy, it is the one room I would like to organize and fall in love with again but I certainly don’t have the energy to do it now. I need to love my bedroom, but I can’t, there is too much clutter. Clutter everywhere, this room used to be my sanctuary, a place I would go to be at peace. Now, it represents too much garbage and disorganization, books, perfume, two kinds of deodorant, an old coffee mug, a bottle of water, a flashlight, a phone, old photographs and that is just in one space. I know this is not good for me, I realize it.

I need to clean, to put things in their proper places, to organize my space, my world, inside and out. Whether or not I capture the words of my songs on paper, I need to sort things out in all aspects of my life.  I know that once the physical space is clear, I will make the choice, that the music will be a wonderfully complicated, song with a lot of tenderness, love, warmth, grief and of course, a touch of the blues. It’s real life, after all.

photo credit to above named photographer

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UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

Buying Yodels For My Family Is A Big Fat Lie

Yodels

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The year of tension and excitement and dread is upon us. We have a Junior in High School and  Senior in High School at the same time. I get mixed up when I write a check, is it for the PSAT? Senior dues?  Homecoming? Does my daughter have driver’s ed the same time she is babysitting twice a week or will that work out? Will my son and husband’s EMT class conflict with my son’s attention to applying for college? How will he get all his homework done? How will my daughter do all these things at the same time?

Our guidance counselor is on medical leave and I do feel bad for anyone who is sick. But, to my own chagrin when we heard the announcement my husband and I both thought: “What about our kids?” They are in their Junior and Senior year and they have no guidance counselor. It was totally selfish and somewhat unkind but it is reality.  I’m sure they will figure out things at the High School but becoming one of  “those parents” was totally disheartening and disturbing.  It wasn’t right, it wasn’t nice but it I admit it, it crossed our minds.

Tonight, we thought we had our son’s Senior essay all set (and since when do the parents have to do the work and write an essay?).  We wrote a beautiful, succinct paragraph that truly summed up his character and learning style. All was fine until I heard people wrote pages. Not one page but two or three, one parent wrote five. Granted, this is a bit much but I had the horrible feeling that we had done too little. So, after calling friends, taking polls and freaking out, I tried to expand his essay and elaborate so we will have at least another paragraph, two if they are small.

This added news sent me into a frenzy. I panicked, I stressed out and of course, I ate. I went straight to the kitchen where a lone pack of Yodels sat in their pretty white box with blue and orange trim. They were basically begging for me to eat them. What could I do?  I ripped that cellophane pack into shreds within two seconds, and ate them as I was climbing, with pain and soreness, upstairs to the bedroom. I literally stuffed them into my mouth. Sure, I ate them one at a time but I did not linger, I did not sit down leisurely and peel the chocolate, I just ate them.  I didn’t even ENJOY them. That, my friends is stressful eating. Next time I go grocery shopping, I cannot kid myself that buying the Yodels was an altruistic act for my children.

I can tell I am overwhelmed because my jaw has stiffened and my TMJ hurts. I am trying to relax but I can’t. There is so much going on now that I can’t even “breathe” myself down. If Yodels didn’t help, nothing will.  This is not good for my auto-immune disease or my fibromyalgia because I think the stress makes the symptoms worse. I am in pain and I am very tense and my body hurts in places it shouldn’t hurt. Even if I slow my body down, my mind (probably still from the aforementioned Prednisone) will not. I just can’t stay up much longer, I’m tired and need to sleep. For a person who never procrastinates I am thankful for one extra day. One last day to finish all the things left to do, retype the essay, clean the house, do laundry, go to pick up a prescription and most importantly, not eat Yodels.