Hitting The Wall: Fibromyalgia

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Fibromyalgia and Fun. An oxymoron. Who would argue with that? Everyone who has this chronic pain illness.  I’ve recognized a pattern, on a “good” day ( rare)  I can get out of the house (showers are optional) in the morning and I am able to do a couple of errands. The maximum time spent out two-two and a half hours. The other day I pushed myself to three hours and right in the middle of the sidewalk I hit the wall.

Literally, I stood on the street and felt all energy drain from me. I couldn’t speak, walk or focus. Finally, I managed to get to my car and after a few minutes of sitting down, having something to drink and eating some peanut M & M’s, I was  able to drive home. *(Think about doing this fellow Fibro Buddies, yes, its sugar but it’s also protein.) Once home, I dragged myself upstairs with my hands on the stair rails, one step at a time, like a toddler. I flopped into bed with my street clothes on and passed out for three hours.

Rolling around in my brain for the last day or two is a notice posted on Facebook about a fellow Fibro sufferer who has taken her own life.** This is not the first person to do so and it makes me so sad. Was it the pain, the frustration, the depression, the anxiety, headaches, all the above? Did she take antidepressants or anxiety tablets?  Was she faced with uneducated and unkind people who didn’t believe her?  Did people think she was just “complaining” a bit too much or maybe she had a doctor that  rolled their eyes and told her to just calm down and stop whining.

I will never know, but I cannot stop thinking of this woman, so desperate to leave her life, her pain. I don’t know her but I feel FOR her. Yes, we do have a chronic illness that is limiting and there is no cure for it. BUT, through trial and error, it can be maintained. You need to stay and fight for your life, for your children, husband, partner, mother, lover or precious dog or cat. You need to fight for YOU.

We have support groups for this very reason. Please don’t give up. Join one of the many wonderful groups on-line if you need support and, if you are EVER thinking about taking your life, let someone know, a friend, a neighbor or call the hotline below. I’m begging you. I care, we all care. We understand. There is a tomorrow that will come very soon and it may very well bring with it lower pain levels and a better day. The day you are having is probably the worst it can get, give your life another day, another chance to be happy. That’s all I ask for.

**No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

 

#FWF Kellie Elmore

Frühlingsblumen verschiedene Krokusse (Photo credit: Wikipedia)

Circle of Life: Death & Rebirth

This is the time for introspection, to put things in order not just for my house, but for me. My life lesson: I have clung to old friendships far too long, they are dead, like the crumpled crisp brown leaves on the yard. Friendships where I am the only one who is trying.  You can’t force a friendship and your real friends, your true friends are always there. “The past” is a nice memory not a basis for friendship.

It is the second week of November, I look out my window and see gray skies and naked trees. There is no more sun peeking from behind blue skies, I mourn the sunshine, the flowers, the bright, orange, red, yellow leaves of the Fall that used to embrace the trees. What was once my favorite season is now seen as the precursor to the worst season, Winter.

Winter is on its way, people are dismissive and say “add layers of clothing” as they stuff themselves into scarves and hats, mittens and feel warmer but not me and not anyone who shares the chronic illness of Fibromyalgia and Hashimoto’s Disease. Those words taunt us, they are a  joke, a cruel comedy, a farce. Nothing helps, the winter chill goes through our bones and latches on like a one huge tick, sucking blood. We are always exhausted, we have no energy, we have what seems like the flu without the fever, every day of our lives. In the winter our bones and muscles are stiff, unyielding and painful.

Many times I don’t get dressed. My nightgown becomes my party dress and my pajamas serve as my jeans and sneakers. I know when I am in a ” Fibro Flare” when I cannot wear anything, that strains against my body. My body is bloated and the jeans make angry red imprints on my stomach even though they are the right size for me. If I have to be outside, as soon as I  come home I literally rip the tight, restricting clothing off, my bra, my pants and change into loose, soft pajama bottoms and a well-worn tee-shirt. It is only then I can breathe. To people with chronic pain, Winter is a slow death, a Tragedy.

After a long, bleak winter, when the temperatures get higher and we have weeks of rain, my body and mind change. My body hurts because of the dampness and the changing weather but my heart knows that soon I will see buds springing from the ground to show off the first fashions of Spring. One day out of the corner of my eye, I see several bright, green buds pushing their way from the deep, dark earth. It is the promise of Spring fulfilled, crocuses have pushed their way above ground: Hope. Once the crocuses have sprung forth, soon we will see the burst of color dancing before our eyes.  It is a ballet I love to watch.  I never get bored. In a matter of days the forsythia bush in my back yard has sprouted brilliant, bright yellow lights, buds and I know that we are safe and loved.

One day, the sun pulls out its lazy arms and stretches, beams its beautiful smile and soars to the top of a deep blue sky. It is officially Summer, It is time to Rejoice, to take advantage of every single day that we have been given, a reprieve, from pain, from gloominess, a treat. I enjoy the summer as much as I can. Even though extreme heat is not good for chronic pain patients, it is good for my soul to look outside and see the painting of flowers and sun and hear the laughter of children riding their bicycles in the neighborhood. The sun, makes me happy, it does affect my mood. It softens the world around us, like a soft, romantic filter on an otherwise hard life. I am grateful for the sun, every single day, it is time to Celebrate with friends: joyous laughter, food, children selling lemonade, dogs running around outside, people holding hands. This would be my final act.

The Moment A Tear Falls

DISTRESS (Photo credit: Davi Ozolin)

Blue. Medium Blue, not Light Blue. Medium to Dark Blue. Not Black, Definitely Not Black. That’s what I was, for some time, I wasn’t happy. I started looking for answers to why I was so blue, but I couldn’t move, couldn’t think; I was trapped within myself. There had been anger and tension in my extended family and I looked everywhere to find answers; I was depressed, you don’t need a reason for depression. It is, it just happens, you feel sad, alone and it is also contagious. My husband has been depressed for several months, my rock, my person to lean on, it shook me up, not that I knew it when it was happening. I was searching for something, anything, anywhere but in essence, I had forgotten an important thing. I had forgotten about me.

I wanted to run, hide, have people help me through these feelings that I didn’t like, depression, feeling blue, blah and everything that comes with it. Little things just added to my depression. “I was quite surprised when I dragged myself in to see my therapist and she asked if there was anything I was looking forward to?” I literally looked at her as if SHE was crazy. I had nothing to look forward to, but she could tell that by just glancing at my face.

Now, since the fog has lifted a bit, I can try to look forward to another day on this earth though when you are severely depressed that is not an option. You can’t. Aside from Fibromyalgia, an Auto-Immune disorder and some physical pain I don’t have a disease that is life threatening (well, not yet.) I  should have been thankful for that but you can’t see it that way; It just doesn’t fit into the pattern. You just want to lie still in bed, under the  blankets.

I stopped searching for all things outside my life and one day I felt a cloud gently lift, literally by inches, I pictured as a venetian blind being pulled up slowly and just a bit. I didn’t want to get excited but I noticed it and that itself felt good. Cautiously, I waited until the next day and the next and I was feeling a little better. I had stopped reaching outside and started looking within, when I started to cry, really cry and get angry I thought that it was a good sign. Who said “Depression is anger towards inward?” A bunch of psychiatrists including Freud and in my case, I have to admit, I agree.

If you haven’t been through (even a mini) depression you really can’t relate, I was let in, however, to a world I had never seen and it scared me half to death. My empathy for people with depression is stronger, I had never been depressed before. I saw a part of your pain, a glimpse really and I don’t want to go back.

Venetian blind, detail (Photo credit: Wikipedia)

all photos used are property of the owners.

Heat Wave

Sad and worried old woman (Photo credit: SalFalko)

Sitting on my bed, logy, tired but I can’t sleep, nauseous but I can’t eat, I force myself to drink ice water.  I make attempts to go out just to leave the house for a few minutes but all it does is make me appreciate my air conditioning at home. I don’t do anything worthwhile at home, I’m certainly not baking, cooking, turning on the oven or otherwise doing anything useful. I have done my laundry but it is cool in the basement and that is my incentive.

I don’t care about anything, am I depressed? Sure, a little. The other side is am I happy? Heck, no. Still, there are no strong feelings anywhere inside me, good or bad, I lack affect and interest. I can’t even blame my Fibromyalgia or my auto-immune illness (Hashimoto’s Thyroiditis) on this, sure they make me tired but I don’t think they make me blue. The fact that my husband has been down, lacking energy, and very tired has not helped, I am worried about him. I’m sure we feed off each other but I know I will feel a little better if he is alright physically. Men have a hard time admitting their feelings, trust me, he is no different. I just think I am more persistent and as my children call me a “touchy- feely person.”

Books, my passion, pile up and remain unread. This is unheard of for me. I am not afraid, I am not anxious, I am not in a deep depression or a feeling high. I’m just sitting, on my bed, pecking at the computers keys, like a woodpecker on a tree or a house, repetitive, sometimes annoying, it’s just a thing they do, over and over again in the background, like me.

Grumpy, Sleepy, Droopy, Cranky? Yes, That’s Me

Image by Jenn and Tony Bot via Flickr

I haven’t had a good night’s sleep for a long time and I want sleep NOW! I need a good night’s sleep because I have Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis and a tendency towards anxiety when sleep deprived. Lately I feel I have jet lag every day even though I haven’t gone on an airplane or visited fascinating foreign cities. I feel bad: achy limbs, stiff muscles and joints that roar with pain. My eyeballs ache, the soles of my feet throb, even my finger nails, unpolished and raw, hurt.

We have been living in one hotel room, my husband, my daughter our dog and I for the past six weeks. We’re doing the best we can since our house has been destroyed by rotted wood, termites and carpenter ants. It’s a horrible situation not to mention the emotional and financial stress. We have stress layered on stress.

We get along fine and try to respect each other except for one annoying factor: cell phones. I don’t understand this generation of teenagers that get text messages all hours of the day and night. My daughter’s alarm, also from her phone, shrieks loudly, picture loud buzzing bees meeting chain saws every ten minutes. It’s hard to go back to sleep after that, my husband and I are old now. We can’t just fall back asleep like our children can.

We drink free coffee from the hotel stand in the morning and snack on food we have in the room and then we have one meal, dinner, out. We can’t afford to eat three meals out a day nor do we want to. I dream about being back in our old kitchen planning a simple meal. When you have to eat out all the time, it’s not that much fun.

We have a favorite diner and it has a dozen pages of every single meal you could want and we still go from page to page not wanting a darn thing. We eat out of boredom, planning where we want to go to dinner can take hours. It’s alright, we have nothing else to do. My husband is still on crutches so during the day I drive him places he needs to go. His ruptured Achilles tendon is healing but very slowly. It’s been five weeks for that too. Why do bad things happen around the same time? Or is it just us?

I cannot see my computer keyboard, my eyes are closing, eyelids thick, thoughts are mixed up and frazzled. Our dog who now rests on the bed is snoring softly; even she knows that 5am is way too early to get up and that we still should be sleeping. I try to nap later on, sometimes I dream that we are back in our home but when I wake up I am sad and upset. I have to remind myself, we’re nowhere close. My dog lies next to me, licking my elbow, laying her head on my hand.  Last night she started nibbling on my toes, tickling me enough to get me to laugh. Sometimes, you have to just be grateful for those special moments.

My Freckles Are Spreading, No Really

Image via Wikipedia

I was in a small shopping mall last week and I passed a mirror and I thought, for a quick second, that I saw my reflection. No, that couldn’t be me. I must have seen someone else. Whoever it was, looked bloated, tired, pale and cranky. She was wearing a green shirt, and mom jeans with protruding stomach rolls, and she was frowning furiously that showed deep wrinkle lines.  That’s NOT me! Um, but I am wearing the same outfit and my eyes are green…..

Maybe the mirror I looked in was one of those funny mirrors that they use in amusement parks, or pranks!  I looked around for Ashton Kutcher because I thought I was being  “Punked”or at the very least, pranked. Ashton, however  was no where in sight and the only camera looking at me was a security camera following my every, suspicious move.

That old, sad, mad, fat person warily looking back at me made me want to weep and hide in some stranger’s musty attic or move to Canada or better yet, Italy. I can give good advice to others about positive body image but it wasn’t working for me today.  Today, I flunked the course.  I  ordered a chopped salad for lunch (appetizer size) and I had that lovely tiny slice of Italian cheesecake with the essence of orange, but don’t those things cancel each other out?

If big, cranky, frowning lady wasn’t enough I also saw that there is now something quite wrong with my skin. I’ve always had that pale, cream-cheese complexion but things are changing.  My freckles are joining together; I’m sure that’s what it must be.  It couldn’t be the dreaded old age spots, could it? This day just keeps getting better and better.

Just one more thing: I remembered the cashier at A & P  who asked me my age. I was so confused…..until she told me that Seniors, 55 and older get 5% off their bill on Tuesdays. It was Tuesday and while I am not 55, I’m really damn close. So, thanks for the discount but your people skills stink.

I know all the reasons why women gain weight in their, (cough, cough) mid to later years and I lend these pearls of wisdom to friends as easily as I would a  button-down blue sweater. My own body crashed with Menopause, followed closely by an Underactive Thyroid condition and an Auto-immune Disease called Hashimoto’s Thyroiditis. After that, I was diagnosed with  Fibromyalgia. But, today I’m just not buying it. I don’t care, I just know how awful I feel. Today, I am allowing myself to sulk.

Maybe tomorrow I will be able to put things in perspective. I will remember that good health is more important than weight, that I have a wonderful family and I am grateful for so many things. As for the cheesecake? It was worth every bite. The mirror? That, was pure evil.

What I Can’t Leave Home Without

Image via Wikipedia

Pretty Lips, Clean Hands And Me

I could be boring and say the usual expected things: keys, ID, driver’s license, credit card but those are things I assume I am bringing (at least I thoroughly hope so, especially if I’m driving.) The definitive answer to this question “what can’t I leave home without?” would be lipstick. “Lipstick? You say?” Yes! Having lipstick on or in my handbag makes me feel more secure (how do you spell OCD?!) I USED to have to put lipstick on before I drove, but now I am (a little) more flexible. I have driven without lipstick but I don’t like the feeling. I could go through many years of psychoanalysis to find out the reason, but it’s so much easier to keep a lipstick, or two, in my bag. You know, just in case……My back up answer would be Purell, the hand sanitizer, because IF I can get rid of some germs, I do. Having an auto-immune disease makes me conscious of those things and even if washing my hands is 100 times more effective, I don’t care. I feel reassured with my little bottle of Purell at my side or rather in my bag. I actually LOVE PURELL so much I could be their spokesperson.
Call me crazy, but it is a frightening world out there and if lipstick and Purell are going to make me feel just a tiny bit better and a little more in control? So be it!

say narrow-angled glaucoma 5x fast on pain meds

Image via Wikipedia

my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress.  doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long,  in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.

i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the  “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain.  i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.

who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.

my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.

i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.

i look forward to slow down the grumbling monster that is the pain in my head and shooting  down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.

Wildflowers Dancing

Image by slight clutter via Flickr

The sun is shining, I have my ready-for-Spring green jacket on and I am gathering my blessings like a girl in a field of wild flowers: purple, pink, apricot and blue arranging them in a wicker basket. Today, my heart feels light, my steps seem smooth like I was on an invisible ice-skating rink and my elbows, fingers, knees are relatively pain-free. This is a gift from Spring, at least for the day and my body rejoices. Will I pay for this feeling tomorrow? Probably, but right now I don’t care.

I raise my face to the sun and delightedly close my green eyes. My hair hangs around my shoulders loosely. There, right there, the first hint of Spring in the suburbs. My nose gets kissed by the morning air, the 70 degree temperature makes me wrap my arms around myself and I eat golden honey on toast with butter and slices of a green, tart, Granny Smith apple.

I am not in pain always, I just write about it when I am. This is my apology to those who think I have NO good days or at least some better days. I am here today and I am enjoying life. A purple crocus is peeking from the earth, my beautiful, shiny nine-year old dog is ecstatic to be on a leash and outside for a leisurely stroll. I am as excited for her as I am for myself.

The snow returns tomorrow and the day after but that happens every year as March comes to an end and the pranks of April Fool’s Day come early. The one day of warm springtime teases us like a devilish child that loves to taunt and run away to safety. We have all known and loved that twinkling, mischievous youth. We know that there will be a few more days of snow and many more of rain and gray puddles. But, since we have tasted Spring on our lips, like the first soft-serve vanilla Carvel ice cream cone of the season, we know that it will come back to us soon. It will be even warmer, and lush, with green velvet grass sprouting and windows wide open to chase away the miserable coldness and stuffiness.  Once we have sniffed  the Spring, we embrace it, when it returns, like a lost puppy. Laughing now, we drink iced tea and grin widely as we look at a bowl of lush lemons gleaming in a simple, blue glass bowl.

5 Things I Am Looking Forward to This Week

Image via Wikipedia

Monday and a New Week
The end of a very long Holiday weekend. Thanksgiving was lovely but it was a lot of work and ended too soon. That happens when you plan something far in advance; once the day arrives, it seems to go so quickly, in one blurry moment. After the Holiday there are three more long, cold, days (I refuse to shop, even if I could, on these wild shopping sales days). Also, last week was HELL, this week is a redo. Everything last week felt depressing and gloomy. Been there, done that. Not going to let that happen again.

In Treatment (HBO)
Looking forward to watching the In Treatment episodes that I DVR. Love the show. I do miss Gina from Season One but love the characters of Jesse and Sunil, in particular. Debra Winger also plays a patient. This is a television show that is worth watching. It’s quick, intense and draws you in to the life of Paul Weston, a psychiatrist (on tv) and his patients.

Lunch/Dinner
Having lunch with my friend Sarah sometime this week. Always nice to catch up with good friends. We talk about going different places to eat but we always end up at our favorite diner. Perhaps date night with my hubby, just going out sans kids, to regroup and support one another.

Facebook Friends
Reconnecting with my supportive Facebook Friends on-line. I’ve found a bunch of incredibly nice and understanding group of friends that share the same illness I have: Fibromyalgia and Hashimoto’s Thyroiditis (an auto-immune disease) These women have become very important to me; we all care about each other. There is no judging, no one cares about race, religion, ethnicity, ANYTHING. We know what we feel and how and nobody in the outside world can truly understand it. But, we know you try…..

Closure
A few loose threads dangling in our lives; we may not get good news but at least we should have some definitive answers. After that we can give each other a push and move on……again.