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.

 

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.

Forecast: Snow And Pain

Image via Wikipedia

I never wanted to be a weather forecaster but I have found if I listen to my body, I truly, can predict the weather. This is not a fun job for me; nor is it a fun job for any people who have Fibromyalgia or another chronic pain disease. There’s a blizzard going on in the Northeast and before I heard about it, I felt it. I felt it in my tired and achy bones and muscles. I couldn’t stand up from a seated position without a lot of pain. I needed to hold on to someone’s hand because I felt off-balance. Some experts say it’s related to the barometric pressure changing. My degree in weather forecasting is not that advanced.

My bones, muscles and body hurt enough as it is. Today, my back and shoulders  and legs are aching and cramping horribly. I am having trouble getting up, sitting down, walking (shuffling) while holding on to the railing in my house for the stairs, one step at a time. I also have the infamous Fibro (Fibromyalgia) Fog that causes me to lose my train of thought or forget something that someone just told me ten minutes ago. It’s bad enough that it’s painful but feeling embarrassed and humiliated is another blog post altogether. I do not understand this mystifying illness; that said, it is hard to expect others to understand it as well.

We’re in the middle of a snow, blizzard emergency now.  I am praying for the electricity and power to stay on so we have heat all night. I’m piling on the blankets, flashlight at my side, candle at the ready….just in case.  It may look pretty outside with snow drifts and the sheets of snow coming down sideways in the light of our windows but it doesn’t feel pretty. It feels horrible, it’s like clenching your teeth in every body part. My neck is stiff and constricted, my shoulders are tight, I feel like the Tin Man of the Wizard of Oz but there is no oil to relieve my pain. I hope for continued heat for all my friends but especially my Fibromyalgia friends because we really know what COLD feels like.

Stay warm my friends, we’ll all get through this together. Huddle under extra blankets and lie still. There will be hot coffee in the morning or English Breakfast Tea with milk and sugar. It’s just the beginning of winter; we have a very long way to go.

We’re Allowed To Have A Horrible Day …..Or Two

Image by lilli2de via Flickr

When I spoke to my friend on-line I told her I was thinking of writing a blog with the title “Losing Hope.”  I’ve learned to wait a little while and see how I feel later on. Granted, passion fruit sorbet and coconut sorbet helped a little. It was probably a combination of the sugar and the unique sorbet flavors that worked so well together.

The morning started with a phone call my husband made to a hiring manager. The good news? He is definitely the candidate that they want! The bad news? They don’t have the funding for the job.  This is the second time this has happened to my husband. He’s been unemployed for a year now. (Anyone know of a Software Engineer job?)  I see his sadness and as hard as I try to boost his spirits today I just sunk lower with him. I’ve been good and supportive but today was too much, so we acknowledged we were blue and then went out for an inexpensive Latin dinner (with a coupon) where he had tilapia (fish)with mole sauce and I had a quesadilla filled with spinach, mushrooms, cheese and horrors of all horrors, green peppers. After I finessed the green peppers to the side, I was happy.

We took our dog out for a short walk after dinner and as much as my joints hurt, and my knee locked, my fatigue overwhelming me, at least I did it. It was one of those perfect, beautiful, warm, dry evenings. It was also something my husband wanted to do and he does not ask for much. So, our 8-year-old mutt, Callie was in heaven, my husband was smiling and after giving myself a tiny push, I felt better too.

There were some “family” issues which bothered me but I got over it with helpful prompting from my husband as in “what do you expect? They always do that….”  Enough said. My mother warned me about not eating too much food on the free cruise and the chubby girl resurfaced and I felt my body inflate and swell.

It’s hard to be sensitive, I can be very empathic but also hurt easily. It doesn’t seem to be a lesson I’ve learned or accepted. I try to “not care as much” but it’s a skill I lack and don’t think I will learn it anytime soon. At least  I’ve learned to get over something quickly which in the past could have been long and drawn out.

I’m vulnerable, to diseases, to emotions, to temperature; we all are.  After trying to fight the knowledge of a cranky,  “snarky” day, I’ve learned (most of the time ) to just give in to it and ride the waves until everything calms down. You never know, maybe the next day will be filled with sunshine,  honey and bright blue skies; it’s possible. Allow yourself to have a bad day or more when you need it and don’t feel guilty about it; we deserve it.

A Warm Welcome For New Chronic Pain Members

Image via Wikipedia

Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.