Figuring It Out. ALONE.

Dark Moon Tree on Night Sky / Magic Fantasy Space

Dark Moon Tree on Night Sky / Magic Fantasy Space (Photo credit: epSos.de)

Part 2: Figuring it Out: By Myself

Why didn’t I just sit down and listen to myself? Really listen and take my advice and go away for a few days to have some alone time? I didn’t have a second this summer when there wasn’t someone around me. Without a doubt, the high point of my summer was spending time with my daughter in Fort Lauderdale,  Florida for five nights, just the two of us. That was amazing and I would do it again, in a hot second, because not only did I want to go but my 18-year-old daughter wanted to come with me. For the first time.

I need my space, have always needed my space so I can breathe. Like a fish needs water, that is how essential my alone time is to me. That’s why I’ve been depressed, I knew it was something simple, something tangible but it was far beyond my reach at the time to understand. Yet, it was right in front of my face. It was just so black, I couldn’t see it.

During this summer, hostile weather and all, I was housebound with Fibromyalgia and Depression, not a win-win combination. For the first time in six weeks I feel so much better, I’m smiling at the computer and a smile feels better than a sack full of jewels. I’ve always needed my alone time and I had none. Not one minute. There was no balance in my Libra life, no balance at all.

I drove myself crazy with questions and speculation deepening my depression because I couldn’t figure out why the cause of my depression. I have never been a depressed person. Anxious yes, depressed, no. I had researched meditation, chakra, astrological practices etc. and what I really needed to do was sit still and listen to myself like I did tonight. Finally. I can breathe again, slowly.  I am yawning with relief and self-satisfaction. Next time, before I run myself around in circles I should just listen to my gut feelings and act on it and not back away because it feels too hard to do or too expensive. It’s worth every single penny and then some. I feel clean and light.

I couldn’t sleep when I wanted to sleep the most. I couldn’t concentrate because I forgot everything the very same second : the cause: Fibro fog (Fibromyalgia Fog: short-term memory loss. I had no appetite and could only eat the smallest of portions. My mind felt cluttered but if you asked me with what I couldn’t tell you one single thing. I felt like I couldn’t breathe. Nothing felt right, nothing was right, I simply was not myself and I was out of balance. I tried to find my center but tried to find it on the outside and not on the inside where it belonged.

It took some time but when I finally figured out WHAT was making me depressed and the feelings beyond that, it was a gift I welcomed. I felt so disheartened not being able to figure it out by myself because that is one of my strengths and yet it was right in front of me. I just couldn’t see it in the dark.

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Being A Mom With A Chronic Illness (ChronicBabe carnival)

Mother and Baby

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

Sadly, The Biggest Fibromyalgia Fog Ever (And Food)

Stairs.

Image by ЯAFIK ♋ BERLIN via Flickr

A few weeks ago on a Saturday morning, my husband woke us up from a deep sleep at 7:45 am, which on the weekends is basically the middle of the night. We went to meet his parents for brunch “in the middle” of our two houses in two different States. What I thought would be a one hour drive ended up being two hours for us. Two long hours, coiled like a bright pink hair scrunchy  in the front seat of a very small car. I didn’t move around in my seat, didn’t ask to stop the car so I could stretch, I just sat there like a block of white marble. Why? What was I thinking? Apparently, I was NOT thinking.

During the trip there I totally forgot that I had Fibromyalgia. How could I forget that I had a chronic illness? I really don’t know but that is exactly what happened. It didn’t occur to me until I felt locked in place and could not get out of the car. I couldn’t turn, I couldn’t extend my legs out, I couldn’t move and finally, the long, first step from the car to the pavement was pure agony.  It was the greatest Fibromyalgia Fog of all:  Blissfully forgeting I had Fibromyalgia…until we got there.  Had I remembered the illness I would have stopped every half hour to get out of the car, stand up and stretch. I should have been prepared, physically and mentally but I wasn’t. I just wanted to arrive at our destination. When we got there every inch of my body hurt like thousands of razor blades performing a pain symphony.

We walked up a long winding, flight of stairs, my new arch-enemy, to get to the restaurant we were going to for the brunch buffet. I looked up the winding staircase and had no idea how I would be able to get up. Being stubborn and independent I clutched the banister with the strength I had left, my stiff legs and knees protesting at every step; I walked like a small child, one step with both feet at a time. I realized anew that Fibromyalgia is a horrible, debilitating disease and forgetting about it entirely was a terrible burden for my body and my feelings; I felt stupid and embarrassed. “Loser” I muttered to myself.

Finally upstairs we were treated to a lovely meal. The brunch was a buffet, a man played the piano, my teenagers were well-behaved, there were mimosas available and it looked festive. We feasted on made-to-order omeletes, mine with mushrooms and cheese. On display were cinnamon buns with drizzled, sweet vanilla icing. They served eggs benedict. an array of cheeses and fresh vegetables and Belgium waffles with a vat of whipped cream and another close by filled with bright red, plump strawberries. They had croissants and rolls and blueberry muffin tops coated with brown sugar. They had serving stations of steak with horseradish mayonnaise and grilled sirloin, all too carnivorous for me so early in the day. There were smoked salmon platters and my personal favorite, a lovely poached pear, the color of burgandy, with brie and walnuts.

Once we were finished I dreaded walking down my nemisis, the evil staircase. I had to take a deep breath with every painful inch that I could move. Each step sent electric shocks down my legs, my hands were red and swollen, as if arthritis had landed in my body unannounced. I stayed behind the family this time and managed with one hand to clutch the banister down and with the assistance of my husband holding on to my other arm. I felt like a 95 year old grandma and while I appreciated my husband’s help, I loathe that I need it. I don’t like feeling dependent, at all. The food cheered me up, it was lovely and presented gorgeously. I tried to remember that and not getting there or going home. Next time, please, someone remind me so I can avoid a Fibro Fog as stupid as this one.

Prednisone Bitch, Part 2 (ENERGY!!!)

The Energizer Bunny

Image by Ben+Sam via Flickr

I just made 5  huge portions of baked ziti and covered them all with shiny aluminum foil. I put two small portions in the freezer, for my daughter (she’s a vegetarian) I made a big one for all of us to eat tomorrow night and made 2 to give to a friend.  I also made chilled peach soup with spices  for my friend and bought her a still-warm Italian bread from the bakery as well as a bag of brownies. I delivered the food, found room in our crowded refrigerator for ours and practically buried my head in the freezer to make room for the rest.  I have folded three loads of laundry, have one load in the washing machine that I will soon transfer to the dryer. I loaded the dishwasher and ran it, and then washed various pots and pans by hand, rapidly. This is so not me, this is me on steroids; I could be a walking, no sprinting, advertisement about drugs: this is my body on steroids, this is my body without; what a difference!  I am spritzing  Fantastik on paper towels to wipe up spills, I am cleaning up the house. My movements make me dart back and forth and I am talking at a really fast pace. I actually think my husband prefers me like this, the “energizer bunny” onspeed and not my usual low-key self. He better not get used to it because in a few days it’s all over and I will be back to my old chronic pain and fatigued self. Unfortunately.

I know it will be depressing when I come 0ff of this steroid high but it’s amazing how good I feel. Rush, rush, rush. My fingers can’t  type as fast as my thoughts are running, streaking through my head. My son, looks at me both amusement and  concern: “Mom, calm down” he advises, but I explain to him that I cannot. I will however, be back to my usual sub-par pace in a mere few days. As for now, I feel chipper; a little too chipper. Remind me later, friends, when this wears off, what it felt like to read this, to feel this, to embrace this because every day I will feel less and less energized, more and more lethargic. I am the movie “Cocoon” for those of us old enough to remember. I am “Cocoon” the re-make, 2010.

Luckily, the bitchiness of the first day is over and I am no longer throwing darts, figuratively, at someone’s head. I am not sending off vapid e-mails and insulting comments, that was bad-me, ” Prednisone Bitch-Me.”  Thankfully, she  has left, departed, disappeared, leaving behind sparks and energy.  It was as if wild-me had been let out of hiding after many years or I had broken out of prison. The energy is here, the meanness is gone, it was a good trade.

Perhaps I will go to bed late tonight ( can you see me tiring out quickly?) and do a few more chores, instead of what I usually do: read in bed, watch a little Food Network television ( or Bravo or Travel) and play on my computer. Luckily, I have already DVR’d a few shows, which I have never done before but accomplished that this morning after my first cup of really strong, aromatic, Bustello coffee. Now I know that I can watch these shows at my leisure, when leisure finds its way back to me, say in about 4 days or so. Right now, I can’t at all describe myself as leisurely.

The first night I was on Prednisone I was roaming the house, inside, up and down my 13  carpeted steps because I could not fall asleep, I was up until after 2am, now I know why. Last night, with my allergies so bad I had to take a Benadryl, I nodded off at about 12:30am. My usual bedtime sans Prednisone is about 10:30 and that’s on a really good night.

My mind races, my legs, that usually, carry the weight of the world, walking slowly  and painfully in sneakers has all but disappeared. I am practically frolicking. It’s like a vacation from chronic pain, fatigue, fog, and lethargy. I am very alert though when someone is speaking to me I don’t listen as carefully because my mind is already formulating the next sentence.

I’ve typed this whole page in less than a few minutes but don’t give me credit. In a few days I probably look back and say how artificial the feeling was, how the energy was just too much. Will I do that? Probably not. I will remember how I felt with great fondness and longing. This is not what normal people feel either, this is steroids, pure and simple, artificial and dangerous and today, it feels good. I’m not going to lie.