Day: March 27, 2013

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)

356: Teaching the Teachers

| Aspergers Girls

I have been praying and asking for guidance regarding my future vocation and avenue of service, and the answers very much entered through slipstream full force this early morn.

At first, I was given the message (through my little knowing voice) that my husband would over-sleep his five a.m. wakeup call (alarm) and be late for work, unless I was awake to wake him up. Hmmm. That was troubling, as with my own dyspraxia/dyslexia, I had no idea how to reset my own alarm in order to wake him up, as he was sleeping in my son’s bedroom. (Long story why we were in separate rooms, but basically boils down to dinosaur snoring, if there was such a thing.) I could have retrieved my phone from upstairs I suppose, but I wasn’t awake enough to think of that. So I tossed and turned in a type of vision-state for a bit over an hour. Knowing enough I had to stay partially awake.

I was certain time stood still, as the leap between the time of four to five seemed to take the stretch of a day. During this time I was shown image upon image.

I revisited my time at the university, the place I chose to leave a little over a year ago, based on the way I was discriminated against for mentioning I had Aspergers Syndrome. I revisited it all, the whole of it—emotions, illness brought on by the stress, the mourning process, the wanting to prove my side of the event and expose the injustice, the sob-filled-telling to my therapist and her concurring I had been the victim of appalling behavior on said professor’s part, the anger stage of wanting to sue, the humiliation part of being set up in a mediation that wasn’t a mediation…and on and on.

How dare they, is what I thought, and I spun and circled in mind about pulling up the evidence—the emails from the witness who at the time of mediation froze up and remembered nothing, the notes from my therapist, even my therapist’s comment that this man had a reputation, hearsay or not, she knew of him well, the notes from the Dean’s meeting, the Dean of the department warning me not to ever bring up the word Aspergers in professional setting: “It’s not the appropriate place.”

I dug up so much old stuff: the confusion of being accepted into a Masters in Counseling program that didn’t even want to know who I was, who didn’t even want to know how my mind functioned. The confusion of being told I was creating my condition (Aspergers) and announcing to the world my son’s brain (who has Aspergers) is broken. The confusion of receiving lower marks on my papers after the mediation took place. The confusion of one professor offering unsolicited advice about me, once she found out I had Aspergers. The meltdown of my self-esteem, self-worth, and self-love that dissipated much like the wicked witch in The Wizard of Oz into a molten black. Why was it I who had to undergo such pain?

I thought back to the high marks I received as an educator. Always the highest marks. How my college classes previously, through undergraduate work to my Master’s in Education program had been a place of safety. How the professors appreciated my input and intelligence. At times how I became the exemplary “one” or the teacher’s pet. I remembered how with every endeavor I’d ever set out to do, I had excelled, even exceeded others’ expectation. And here, in the span of little over a semester, with the hearing of the word Aspergers, the others, a set whom were supposed to be my mentors, painted me with their own muted greys into something I was not and am not.

Suddenly, all of me became what they saw. Suddenly, I had lost all I had built. With one swipe they knocked the self out of me.

And as I processed through the events and corresponding pain, I began to wonder what to do with this surfacing anger. A damaging letter came to mind: “Look at what they did to me.” And I let those thoughts come readily and steadily and tear into me one by one. I bled in my bed. I bled and bled, the tears of my soul seeking vengeance.

And then, with the passing of deep ache and hollowed out chance, I let the feeling go. I let the anger purge through me and erase the fear. I let the anger dance and take flight. I let the scenarios play out. I let the other me who wished to be free escape. And this shadow side, she wept more. Her screams the own echoes of demise and lack of rescue. For she had tried so very hard at this University, where her dream of being a therapist was going to come true. She read all of the “extra” books, did all of the “extra” credit, spent countless hours, setting aside her dyslexia and dyspraxia, in hopes of impressing her professors, and hopes they would see her, see her brilliance, see her mind, see the gift she so readily wanted to share with the world. This part of her less-ego than giving spirit. See me, see me, see me! That is all she wanted. That was all she ever wanted.

In receiving her diagnosis the world made sense to her finally. She wanted to celebrate. Four-decades of not knowing made sense in a split-second. Four-decades of intense suffering realized and ended with the blink of an eye. In the mention of a word. This gem of Aspergers had saved her, had brought her home onto herself.

And in knowing this, she wanted to share. She had to share. She had to let others know. “Look, I found the key. Look!”…….

And instead I was made to think I was broken. I was wrong. I was made to be pushed back into a hole and remain uncovered. Not one professor wanted to hear, wanted to know about Aspergers. Even in the beginning of the second-semester of my group-therapy class I was warned, we as class warned: Don’t share the diagnosis stuff here.

Really? I was so beside myself, how could I share in group therapy without sharing the essential element of who I thought myself to be and how I thought myself to function.

Could they not see I wasn’t broken? Could they not see that Aspergers was not a disease, not an illness, not anything beyond the way I saw the world?

And the questions came bubbling: Why would I be hushed, unless indeed I was entirely flawed? Why would I be told I created this, unless I was entirely unaware of my own self?

So much damage done, in so little time.

Today, before the sun rose, I wept in bed, the whole of my body sweating and seeping out the poison. And I turned and turned, half in sleep and half in agony. Lessons, lessons, and more lessons.

And then the peace finally came. Right when it was time to awaken my husband, I was awoken.

The clarity seeped through me. I saw that I had detoxed the emotions. I finally released the torturous anguish. I finally set my self free and their falsehood to rest.

I awoke fully with a knowing. I knew what I was supposed to do.

I was to teach others, teach the teachers of the teachers, the educators of future counselors and psychologist, the parents, the caretakers, the women of tender-heart and soul like me. Teach them that Aspergers is nothing to be ashamed of and nothing to hide away. Teach the beauty of who we are to erase the darkness that once pushed me into hiding.