We Didn’t Ask For This (FIBROMYALGIA)

27/365: fractured reality/grace under pain

As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us  live in a state of chronic pain.  Believe me, no person would want this every single day of their lives, no person would choose this.  We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day.  People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.

Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for.  No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.

If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods,  soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need.  Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS,  feel all sorts of crazy weird.

Chronic pain, with no relief is horrible. Please don’t talk to us like we are  psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.

Lost And Found

Tulips from Keukenhof Gardens, Lisle, Holland.

Image via Wikipedia

I haven’t been writing at all and I don’t know why. It’s always a bad sign if I don’t write. Now, I need to question myself, in public, about what’s going on. The past week has been filled with pain, intensely painful legs out of nowhere with nothing to help dissipate the pain. Tylenol, Advil, Aleve, even Tramadol which I have been taking twice a day. Of course, I thought, I jinxed myself when I wrote that I was “lucky”that my pain was less intense than some.  Past tense. Now I have a new pain that I didn’t think was possible and I don’t know where it came from or why it still exists. That new pain jolted me to a new reality and I hate it.

I’m bothered that my sister is my sister and not a friend I would pick and that the best friend I had picked has completely lost herself,  in her marriage and her children and has not resurfaced for years. The stress in the house has become unbearable at times, with my husband unemployed and a Junior and Senior in High School. They have essays to write, exams to study for, colleges to apply to, jobs, appointments, homework, studying. We all feel the stress around us, inside us, despite of us. My children and husband are what keep me going; I not only love these three people, I adore them. They make me laugh, they make me smile and when I was about to cry today, they knew it long before I did.

Yesterday I laughed so hard I had a stomach ache, my kids put up a fake unicorn tapestry to prank their father for going to the Cloisters. After dinner with our friend Janis from California we all ate chocolate, one with a spice called cholula. We laughed and gasped through the pain and I downed two glasses of Arnold Palmer lite iced tea and lemonade afterwards. I went to bed smiling, the laughter being a delightful and unexpected present.

The holidays are almost upon us and I start thinking of my dad, who passed away 8 or 9 years ago. Why is it that I can never remember the year he died? Not being good with numbers has nothing to do with it, it’s a mental and emotional block that I can’t seem to get over. My father was the buffer in the family, the diplomat, the peace-maker. Without him the rest of the family is a triangle of raw emotions.  I was the one who lost the person who understood me the most and who thought identically like me. There is a gaping hole in our family and as everyone who has lost someone they loved knows, there is nothing to heal that pain. It’s like a festering, open wound and once in a while someone tosses in a cup of salt every now and again. There is before and there is after. Your whole world changes forever.

My birthday is coming up and as much as I used to love my birthday this year it feels like a dull ache. I don’t care that I am another year older, I was never concerned with age. Whether I am 53 or 54 doesn’t mean much to me at all. I don’t hide my age and I don’t erase my wrinkled forehead. These fine lines come from experience, both good and bad, they are here to stay. Earlier today I was thinking of my “bucket list”.  The first thing that came to mind was a tour of the tulip season in Holland and snorkeling in  some Caribbean Island so I could escape the long, cold, snowy winters.

Life is short, I am trying to make it fun. Every day is a gift and I should appreciate it but sometimes I get swept away by all the negativity and I need to pull myself up and out of that empty hole in the musty, brown earth, inch by painstaking inch. I think I have found my voice again so after I dig myself out, I will be facing the sun.

Gray

Tropical Depression One upon being declared

Image via Wikipedia

In my 200th post (ok, I missed it, it’s really 201) I look back at who I was when I began, and who I am now. Many things have changed, many have stayed the same.I ‘ve always blogged about different things: pain, joy, food, celebrities, loss, egg salad, Food Network, chocolate and people. I blog about whatever I want and I don’t hold back; today my life feels gray and dark and tumultous.

The first bog I posted was tentative and scared; the name of my blog itself (hibernationnow)speaks volumes. I was a frightened and sick bear cub that wanted to burrow under blankets and hide, away from people, from symptoms, from pain, from life. I’d had enough of various illnesses and I just couldn’t deal with it anymore. Since writing had  been a passion in high school, I decided to take a chance and try once more, I decided to blog on-line. For me, it was a very bold  first step; I hadn’t written anything substantive for more than 35 years. I started with one post, here I am today. When I don’t write in a while, like now, trouble is brewing.

Having  chronic pain  is not an easy thing to deal with because it in itself is so unforgiving.  I have to consciously say out loud  ” this is not my fault. ” I have also learned from my blogger friends that “pain is pain” and that I can’t compare my pain to others nor should I diminish it. I give this group of women in the chronic pain world a lot of credit, they will hold you when you need it and tell you the truth when you deserve it. From them I learned that my pain is no greater or no lesser than anyone else’s pain. I hurt, therefore I am.  I am now owning my pain.  These women in the chronic pain community have given me support, information and emotional good cheer. We keep each other afloat and when one of us is down, the others rally around with gentle hugs. If the world could be run by this group there would be no war.

In the past year there’s been hospitalization,  various autoimmune drugs (and their evil side effects)  asthma, broken ankles, fibromyalgia and a thyroid with the beat of a listless, dull, old  gray-blue pidgeon. I was so nervous about my last routine round of blood tests that I had a full-fledged anxiety attack and needed to take a Xanax  but alas I was too far gone and it didn’t help.

For the past three or four days I’ve had excruciating pain in the small of my back and in my legs. Sitting, standing, sleeping or walking, this is a whole new arena of pain that I have never experienced. What is wrong with me? Why is this happening? What’s the matter with me?  In this tumbled world of chronic illness I don’t know where this particular pain is from. Is it a side effect from the medicine? Is it a pinched nerve? Is it something new and horrible?  Inside, you groan, “oh no, not again….” and still it continues. I am feeling depressed and ill at ease; I am now a stranger in my body and also, my mind.

My husband of 22 years has been unemployed for more than a year now. I’ve handled it well until recently but I think I am at a breaking point. We have a son who is a senior in high school and a daughter who is a junior in high school. The stakes are high at the moment, there seems to be a new challenge every day. There is chaos on top of chaos.  I’m trying hard to hold on but I can feel myself slipping. Perhaps my new pain is telling me to breathe, to slow down, to let the stress go. I’m trying.

I am in the eye of the storm and the world is whirling around me and I am stuck in the middle, unable to move, wanting to scream out but being incapable of screaming. There are so many things to do and so many emotions that it feels overwhelming.    I am stuck in pain, in conflict, in existence; I need to breathe, to find time to breathe and sit with music as my therapy and Advil by my side. Soon, I will ask for help.