fatigue

357: My Pain Conditions

| Aspergers Girls

I don’t often talk or write about my physical pain, mostly because pain does not define me as a person. Currently, I have several pain conditions. I suffer more in the winter months and do amazingly well in the summer. Sometimes I can get hit with flare ups from multiple conditions all at the same time, typically around my womanly cycle. That was this last weekend, and yes, that was basically hell.

The pain is not so intense that I require pain killers to function. In fact, I usually only take one over-the-counter pain killer (Tylenol) once or twice a month. I save those beauties for the super tough days. But the pain is always with me; it doesn’t go away.

In doing research about hyper-joint mobility syndrome (closely related to EDS, if not the same?) I discovered it is not uncommon for people with this type of condition to have extreme fatigue by mid-afternoon. That is me for certain. Each day at about four in the afternoon, I am ready to settle on the couch. If I sit, in the latter part of the day, then I will have a difficult time getting back up. Sometimes I have to move all day, e.g., standing, walking, cleaning, errands, etc. because more often than not, as soon as I wind down and take a rest, I won’t be able to move much anymore. That’s why I am prone to spend one or two days a month doing massive non-stop cleanings of the house. It’s the only way I can do housework: all or nothing. Housecleaning itself usually sets me back two to three days in intensified pain, but manageable.

When I take my three to five-mile walks, most days in the summer, and a few times a week in the winter, I am fighting through the pain. Pain in my knee joints, hips, and sometimes back. When I say, “I am taking a walk,” it means a lot more to me than just a walk. Forcing myself out the door means forcing myself through the pain.

Simple tasks, like opening a lid on a jar, bending to retrieve something from the floor, or walking up and down stairs, hurt. I don’t loosen up and feel better after stretches. Stretches actually make me feel worse. My pain feels very much like what I imagine a person would feel after he or she hiked ten miles up hill. It is an all over, generalized body-ache. Sometimes I feel like I took a huge fall or was run over by a thousand little trolls. There are also specific areas in my body that flare up, in the sense it hurts more. I don’t actually swell or get red in areas. Flare ups usually happen in my wrists, fingers, elbows, hips, spine, neck, knees, etc. I am sure I am leaving out some area, but you get the picture. The flare ups feel like a dull ache, not severely painful like a tooth ache, just painful enough that sitting here now, as I type it feels like parts of me are throbbing and/or burning.

I am thankful I can go through my days and still function. I can climb stairs with ease, despite the pain. I can clean. I can walk. I can drive. Somethings that are more jolting on my muscles are actually dangerous for me, as I never completely heal from injuries, and actually develop something similar to scar tissue where the collagen should be healing. Thusly, I still feel the three times I suffered whiplash from car accidents, the time I took a hard fall and landed on my left shoulder, and the time a glass-framed painting fell off the fireplace mantel and landed on me. Those pains won’t ever completely go away.

My children are used to seeing me on the couch. It’s what they have grown up with. What they know as familiar. It’s one of the reasons I find so much time to write. Fortunately, when I write, I can escape my body from time to time. I think my pain is one of the reasons it is hard for me to practice being in the present moment. I am fairly certain that the combination of sensory (bombardment) challenges, Post-Traumatic-Stress Syndrome, and constant pain, make it difficult for me to want to be present.

I wake up several times a night during the harder days, usually from the hip pain. I have to shift my body a bit, and then I am able to fall back to sleep. I consider myself fortunate. I fall asleep easily at a reasonable time of night and stay asleep for the most part. However, part of the reason I fall asleep is because I am utterly exhausted from doing relatively little all day. Just sitting on the couch hurts.

I maintain a fairly good disposition. As much as I hated hearing my mother repeatedly tell me that “Things could be worse,” when I was growing up, it is true, they could be. I do have some almost pain-free days. And on those days, I can truly appreciate the beauty of just being. And on my high-pain days, the longest stretch usually lasting five days, I can remind myself, or ask my husband to remind me, that this too shall pass.

I don’t worry too much about the future. My pain has been pretty stable; in other words, I have felt this crappy for about fifteen years and the crappiness hasn’t increased, at least.

I know NEVER to run; even a short fast sprint to catch my dog will result in body pain for several days. A tumble or a fall might keep me down for a week. And the only “minor” surgery I ever had, a small laproscopic “scraping” for endometriosis, took me a year to heal from. It should have taken two days. And, yes, I still feel the pain there, likely scar tissue that never will heal.

I am super thankful I listened to my angels about six years ago. I was scheduled for a full hysterectomy. I had the operation date, and was already setting up childcare when I heard a distinct and audible: “No.” I can’t imagine what would have happened if I had the surgery. I don’t think I would have ever been the same. If minor surgery took me a year to heal from, what would major surgery have caused? Plus, my acupuncturist at the time, a healer I still see when I travel to California, she gently had offered: “I would not take out any part of a body unless it was a life threatening condition.” In other words: keep all your parts as long as you can.

I think sometimes I accept my pain conditions too much, to the point I practically forget. I get super down on myself for not being able to get up and go, to run out the door and go toss a ball or shoot some hoops. Like other things in life, I sometimes long to be “typical.”

Sometimes I make a sacrifice and will do something I know will cause me days of pain, like painting or roller skating, riding a roller coaster, chasing my son, or climbing hills. Sometimes the sacrifice is very much worth it!

The pain has been a gift in many ways. Like I said, I appreciate the days of less pain. And the days of almost no pain are like heaven. And I have been able to spend valuable time with my children. If I didn’t have this pain condition, I dont think I would have left my teaching job (I am disabled.), because I loved teaching and brought income home for the family. If I was still teaching, I would not have been afforded the opportunity to be a stay-at-home mom and to homeschool my middle-son with Aspergers.

Because of my experience, I have gained empathy for those in physical pain and/or with chronic fatigue. And I have gained a remarkable awareness regarding my own body and my needs.

I also am blessed with a patient husband who never complains when I am down. And I get to experience his love demonstrated through service and support. I have seen miracles, too. Like this last month, when I drove over 1600 miles, in a few days time, and experienced little to no risidule pain. I kept asking my angels to relax my body and heal me. And when I do my automatic writing, much of my pain disappears, too.

I don’t know why I live a life with physical pain, anymore than I know why I experienced a difficult childhood or why I have Aspergers. I do know that all my challenges have made me a stronger and a more loving person. I know that I am capable of extreme empathy, because in this short life I have experienced so very much. And perhaps that is my gift: how my suffering enables me to love more fully and to connect more freely.

I cannot imagine my life any different. If one day my pain goes away, I am sure I will be delighted; but in the meanwhile, I am so happy that I know how to choose contentment over victimhood. And I am thankful that I recognize my pain is not who I am.

I wrote this post because there are other people who experience pain syndromes, and I want them to know I understand. And because I wanted to share a little bit more about my journey.

I think we all have special gifts to share with the world, and that if we can turn our trials into compassion for self and others, then we have already accomplished so very much.

In closing, I believe there is a reason for my life. I believe we have each been called to service and each given the tools necessary to answer our calling. For me, one tool in particular has been the continual humbling of spirit. I thank my pain for reminding me of my fragility and humaness, and for bringing me that much closer to reliance on something higher than self.

Diagnosed with:
Fibromyalgia
Chronic Fatigue
IBS
Endometriosis
Fibroids
Hyper-joint mobility syndrome
Lyme Disease (The test has an over 60% fail rate. The test results were questionnable; the doctor based this diagnosis on ongoing symptoms. I tend to think I don’t have this, though, and my pain is a result of the above conditions.)

Self-Diagnosed:
PMDD

Perhaps I have?
Classic Ehlers-Danlos syndrome (I haven’t been diagnosed with this, but it is so similar to hyper-joint mobilitiy syndrome; though I do have most of the symptoms)

Day 139: Tsunami Sam

| Aspergers Girls

I’ve been perusing the Internet looking for an appropriate word for how I feel about myself at the moment. I tried to find the root origin of “suck eggs” and concluded I am not a canine who has trouble with stopping myself from sucking chicken eggs nor am I in an uncomfortable situation that makes me look odd. I searched for the word “suck,” to grasp a greater understanding of the word, and ended up with synonyms like “drink from straw.” I was about to ask Google God about “bitch,” but decided I’d had enough reading about dogs. So here I am, debating in my mind what I am feeling, who I am, and where I belong on this damn earth.

Some things I’ve decided are very hard for me today:

1)      Being married

2)      Eating food

3)      Moving my body

Hmmmmm. No wonder I’m a mess.

I try to be very positive and uplifting—other people tend to be appreciative and accept me when I wipe on my smiling face. The problem occurs when I wipe off the smile; not everyone tends to stick around so readily when disgruntled Sam appears. Silly, really, how folks like the fair-weather Sam, and run from the storm in me—natural instinct I suppose. Maybe that’s why my good friends are the types that aren’t too much afraid of natural disasters: living in earthquake zones, flash flood areas, and potential tsunami states.

I am in a potential tsunami state right now. I’ve been triggered, and am thusly harboring a wave as the ground shifts beneath me. Some of the ground shifting is a result of my short list above. I can sum up number two and three on my list fairly easily. Eating is hard because I am sensitive to everything I put in my system. Moving is hard because of chronic pain. Every food affects me at a physical and mental level. When I consume wheat and most grains, I become fatigued, depressed, and sometimes border on thoughts of paranoia about my health. Sugar often causes instant pain. And any type of food, except perhaps a piece of cooked fish with no seasoning, causes my stamina to decrease by half. Precise to say, sometimes I avoid eating all together.

Doctors and other health professionals have diagnosed me with about ten or so different health conditions; and each condition can harbor a strong potential to cause chronic pain. But I like to pretend they are all wrong. And can do fairly well at faking it till I make it, until the wave sets in, and I feel like I’m about to crash, and take out an entire village with me.

When the physical pain hits hard, my immediate reaction is always the same: denial. How can I be doing so well for a month and then, out of the blue, feel like I got run over by a truck?

Then blame sets in. What did I do wrong? Did I eat something wrong? How did I allow this to happen? Am I stressed? Why am I stressed?

Then resentment comes with her evil head. Why me? This isn’t fair. I hate this.

And then I collapse. A curled up not-so-friendly kitten on the couch, unable to move, unable to do anything really, but complain and act like a person whom has had her favorite treasures stolen: energy and serenity. The trick for me is letting go, and letting the cycle pass. If I could learn to shut off my mind, stop the fight, and just surrender to a day of not moving and not getting “anything” done, then I would be all the better for it. But I have this thing about control…especially control of my own body.

This leads me to marriage. The original title of this post was going to be: Why It Sucks Being Married to Me. But I thought that was just a wee bit too self-demeaning and seriously similar to putting a firing-squad to my ego. Not that ego doesn’t deserve to be taken down every once in a while. I’m just not ready to annihilate him all together.

But I do know I’m not an easy person to live with. I sometimes wonder if life would be easier if I was single. Mostly so I could retreat in isolation and wallow in self-pity. I lived alone in my early twenties. I remember. I was in a constant state of panic and fret. Anxiety lurched around every corner. I was even afraid to leave the house and walk across the parking lot to do laundry. I’ve grown and matured some in the last twenty years. I think I could manage a laundry facility okay on my own. I wonder about all the other elements of life, though. Too many to mention, or even list.

Don’t get me wrong. I like me. I have plenty wonderful qualities to offer a spouse. It’s just, living with me, is like living with a lion let loose from a cage at a circus. I’m trained and all. I’ve learned how I’m expected to act. I try my best. I even love the people around me: they feed me, they provide shelter, they even give me a stage in which to receive praise. And I love them for their unique spirits, too. It’s just I long to be in the wild and free, without restriction, without having to follow a role, having to be something I am not.

And I tend to lash out unexpectedly; from an onlooker’s point of view, I probably appear to lash out from nothing. But there are always triggers. Whether the food intolerance, the surmounting physical pain, or my non-stop brain, something is always about that causes my reaction. Sometimes my reaction is to other people’s words and/or actions, a direct result of my rigid thinking. I carry high ideals. I cannot help this. I find it difficult to tolerate lies, betrayal, aggression, passivity, gluttony, rudeness, and avoidance behavior. And I have a hard time understanding why people do the things they do. I try. I try to be flexible and tolerant. Trouble is this brain of mine is hyper-sensitive much like my gut. And all this rubbish going on inside of me, turns me into a prickly prune—all wrinkled up in poutiness and spiked out with defense weapons. Picture a shriveled plum with sharpened toothpick spears stuck about.

That’s why a cave near the sea sounds nice about now. A warm cave that smells like real wild flowers, with soft organic bedding, no insects or other lurching animals, temperature of 76 degrees, no wind factor, no dampness, absolutely no mold, low humidity, only the sound of ocean water nearby and birds chirping, and absolutely a non-tsunami zone. That’s all I need. I semi-dark luxury-cave on an island inhabited by smiling, quiet, private people. Until the wave passes—just until the wave passes.

Day 80: Me in Parts

| Aspergers Girls

There’s a reason I didn’t go into the medical field besides the fact that I faint if I look at a needle. I don’t do well with illness, disease, or sickness of any sorts, or thoughts of being attacked by a killer species. I do fine with driving my car, walking down dark alleys, crossing bridges, and climbing high places, just can’t deal with physical health conditions—well at least not rationally. The common cold sends me into a tailspin: worse case scenario, worser case scenario, worsest case scenario.

In the course of my four decades plus of living, I was certain of my imminent death at least five times a year. Looming demise total equals 200 times, give or take a death or two. And I’m not talking a passing thought. I’m saying a good two- to three-week sickness-induced death-terror cycle. And with the invention of Google God, the all-knowing search engine, I’ve also had hours of adrenaline-pumped investigative research.

Last year, about this time, I was certain, dead certain, that my heart was going to explode from a genetic disorder. I was so convinced I had the syndrome that I was continually analyzing myself for symptoms, even in my dream state.  In fact, in a comical attempt to self-diagnose, I compared my attached earlobes to others’ attached earlobes and even wondered if my large Italian nose could feasible be considered pinched.

When I was younger, rabies was my big fear. I never ever should have watched the depressing classic Old Yeller in third grade. Why?! Afterwards, my hamster-bit finger led me to check my mouth for foaming saliva hourly, for a month! Watching Hitchcock’s The Birds was another faux pas. Remember the killer bees? Well I do. I believed for years the bees were approaching in swarm.

Bloody noses are notorious fear-buttons, ever since I saw that character on a television show with a bloody nose bleed-out and die.

My fear of the C word started after my kindergarten teacher died; and I still can’t write the word out on paper. Which ironically-sucks because it’s my astrological zodiac sign. Four times during my life, twice as a teenager, and twice as a young mother, doctors suspected I had C or pre-C. No cause for alarm in all four cases, but the panic that ensued during the waiting period was insurmountable.

You know what really bites? Working at a homeless shelter and having a child infected with AIDS bite my leg through my jeans. The doctors assured me my chances of contracting AIDS was almost zero; still they wanted to be certain. I checked my tongue for a white-coat and my skin for sores for a good year.

My most laughable approaching-doom-fear happened when I was nursing my firstborn in the late hours of the night, and I’d stare down at the dirt in the corner of my toenail, and know I was going to die of toe fungus. If you bring in the big guns like MRSA, I so freak out. Any infection is MRSA. Hives? I’m certain I’ll suffocate from severe allergic reaction.  Menstrual cycle off a day—I have growths on my ovaries.

To make matters worse, doctors have wanted to remove my uterus and my gallbladder, and to biopsy my kidney. None of which happened. But the fact of their recommending such procedures makes me think I have bad parts to begin with.

If you’ve got your wits about you, you’ve probably gathered I have a wee bit of a phobia to illness in any form—real, made up, imagined, or non-existent.

What many do not understand about this illness phobia is that no amount of exposure makes a dang difference. With exposure therapy, if someone is afraid of bridges, you can slowly and decisively assist him or her in overcoming the bridge fear. A common therapy strategy might be first showing pictures of bridges, next playing with toy bridges, later taking photos of bridges from afar, and then crossing a small bridge over a creek. If therapy is effective, then the person eventually will cross a bridge as a passenger, then drive assisted, and later cross alone. Sounds logical.

Doesn’t apply to illness: First look at pictures of people who are sick, next play in filthy area, later… not helping! And getting sick and sick over and over again, doesn’t help either. Done that.

I haven’t been feeling myself, lately. Which is significant. Generally speaking my self, due to a host of syndromes and conditions, is relatively fatigued, a little melancholic, and a bit sore in the muscles. So, I hadn’t taken too much note of my intense fatigue, until I could barely function most of the day. My doctor had in the meanwhile sent me my annual blood test forms in the mail (twice), which I avoided like the plague (or in my case the common cold). I finally dragged myself to the doc when the heart palpitations and shortness of breath kicked in. By the day I got my stubborn self to the doc’s office, my forehead was peeling like a rattlesnake sheds.

The good news is it turns out those eight extra pounds are not my fault! And either is this depressions cloud I blamed on the Washington winter weather. Turns out I have hypothyroid.

Guess what this hypothyroid reckoning does to my mind. Here’s the conversation I had with my doctor. I kid you not.

Me: “Well, now that I know I have hypothyroid, I guess I should mention that I’ve been having trouble swallowing. I read that’s a symptom, too.”

Dr. “Oh.” She pulls out a lab slip. “Well then we better get an ultrasound for nodules.”

Me: “Nodules? Can I die from nodules?”

“No”

“I can’t?”

“No.”

“What is the worse case scenario?”

“If they find nodules, the protocol is to keep a watchful eye on them. If they grow, they’ll likely drain them. But nodules are not deadly.”

“Oh, good, but what about cancer? Could I have cancer? Or did my blood tests rule that out?”

“No. Your blood tests didn’t rule that out. But thyroid cancer is very, very rare.”

My eyes grew super big and I swallowed hard.

Dr. added: “And the cure rate for thyroid cancer is 100%.”

“Oh!” Huge sigh. “Thank you so much for adding that. How long will I have to take the pills?”

“For the rest of your life.”

Long pause.

Me: “But what if the end of the world comes? How will I get my pills?”

 

 

 

 

Side Note: (euphemism for I can’t stop babbling)

Taking into consideration the four types of thyroid cancers, I recently researched, the combined cure rate is only 95%. For better effect, in the writing above, you’ll note, I fearlessly overcame my fear of the word cancer. The title Me in Parts means I feel as if I’ve sorted myself into parts with all my constant sickness analysis. The good news is, I always live like I’m dying.