357: My Pain Conditions

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 203: This is Boring. This is Pain.

This is boring. This is pain.

Somedays, like today, I struggle to function.

Every day is a huge challenge for me; something that I seldom talk about or mention. Just getting out of bed takes a lot of effort. I don’t like to write about my  pain and various physical “conditions,” as I am not my conditions, I am not an illness, and I am definitely not pain. I don’t like to talk about everything I must do to keep myself moving.  But I am. Mainly because I was on the couch all day and had a heck of a lot of time to process. Plus, a little boring never hurt anyone.

There isn’t a moment I don’t feel something askew in my body. Because I am so sensitive, even a hair in my face can irritate me, even cause a rash. My own hair! My nose constantly itches. Sometimes my eyes. All my joints seem to hurt. But I can’t tell if it’s my joints, my muscles, or something else. And neither can the doctors. Right now the couch hurts my bottom. The laptop desk hurts my thighs. And at least ten different areas in my body are either in pain or irritated or itching.

I’ve been diagnosed with at least ten syndromes or illnesses. Nothing is a definite. Nothing truly proven beyond a long list of symptoms. At this point I could have inherited something, suffer as a result of multiple injuries/accidents, been prone to pain from stress or environmental toxins, or made everything up in my head.

Sometimes I like to think everything is in my head. At least I have some control that way. The older I get, the more I realize my whole reality is in my head, anyhow. All my thoughts control my mood. My eyes what I see. My ears what I hear. My brain what I take in, recall, process, judge. I’m sure my spirit plays some part, as well as my second-brain (the intestines), but seriously, so much goes on in my head to begin with.

There are lots of things I have to do in order to function. If I skip any of them, or if something is off, I am pretty much certainly going to be in bed or on the couch for a large period of time. Each day I wake up, I feel like I am preparing for battle: a battle just to survive the day without collapsing in great fatigue and pain.

Here is a list I keep in mind to help manage my days.

1)      Shower; something about the hot water on my body rejuvenates me and reduces my muscle pain. If I don’t shower I feel extra greasy and itchy. If I don’t shower, I feel increased pain all day. Problem is, sometimes I’m too tired or fatigued to even think about showering. I have to force myself to. I don’t like showers. They are boring.

2)      Pig hormone; for my hypothyroid I have to take a natural pig hormone. I haven’t eaten pork since sixth grade (my decision). So at first the thought of ingesting any part of a pig, felt odd, but then I figured it was the pigs way of paying me back. Pig karma, for not eating them for so long. Trouble is this hormone gives me the skin of a fifteen year old. I appreciate the healthy glow, but the sticky oil and chin breakouts, I could do without. Seems I’ll take longer to get all wrinkly, though. So, I guess that’s a bonus, even though my skin is worse than my teenage sons’.

3)      Various supplements; if I go too long without any supplement, I feel it somehow. However, one benefit of being me is that I’m very sensitive to what is happening in my body. In September, it will be two years since I’ve had a cold or flu bug. I can feel a cold coming on. I feel it in every joint in my body, like I’ve been poisoned. Feel it before most people do. And when I do, I load up on Vitamin C and Vitamin D. So far I’ve managed to keep from getting sick. Fingers crossed and knocking on wood. I can tell things about me, too. If my eye sight is growing worse, I need more magnesium. If my leg twitches, I need my multivitamin. If I am tired, I need to take my iron and eat a little fish.

4)      Diet; it’s easier for me to list what I can eat, than what I cannot. I can eat nuts, fish, vegetables, and fruit. Everything else gives me some reaction. Chocolate gives me rashes and makes me break out. Dairy gives me rashes. Wheat makes me bloated and depressed. Artificial anything gives me stomach issues. Most foods in general cause me extreme fatigue immediately after eating. If I am going to eat, I usually have a small portion of salad. Grains are going to make me tired. Wine hurts the salivary glands in my neck. Beer gives me a stomach ache. I am definitely high-maintenance. If I am not careful, after a meal, I will be in pain and fatigued, and have to take a nap.

5)      Liquid; I need to have lots of water and green tea. The green tea gives me the boost to function in the morning and alleviates my chronic fatigue. Green tea also lessens my pain. If I have coffee I go into a spastic mode. If I want to clean I have a quarter cup of coffee in the morning. If I drink coffee I will be up past midnight and have lots of cool ideas, or what seem to be cool ideas, but are really elaborated ramblings that don’t prove much of a point. Coffee makes me paranoid, worried, and stressed. Oh, and agitated.

6)      Exercise and movement; I have to move. Once I sit down, it is very hard for me to get back up. Especially if I combine eating in the morning with sitting on the couch. And forget it if I eat, sit on the couch, and skip my shower—I’m pretty much down for the count on those days. If I walk my serotonin levels increase and my mood is better. Everything is brighter. If I walk far, lately five to seven miles in a day, it is easier for me to sleep deeply at night. Fatigue sets in badly about 3:00 pm, so if I can walk then, sometimes a second walk, I can keep from sliding into the unable-to-move zone.

7)      Weather; if there is a lot of barometric pressure from clouds then I have a hard time moving. Also, if it is chilly, my bones ache. At least it feels like my bones ache. On cloudy days (most days in Washington) I need to make sure I take care of myself; if I do not, I will not function. On cold days the far infrared sauna is helpful. But sometimes I am too fatigued to go into the sauna. The thought of having to undress, shower, and then dress again seems overwhelming. I worry about how I will keep up my walking with the end of summer coming. I have to find ways to exercise. We have an indoor treadmill which I avoid. And a stationary bike I haven’t made friends with, either.

8)      Sleep; if I do not get enough sleep, I will have increased pain and fatigue two days following. If my sleep is interrupted and/or not restful, the next days will be harder for me to move. I am sensitive at night. I need a special mattress for my body to feel comfortable, must wear long sleeves and long pants, regardless of the weather, or I itch, and need to use earplugs. All noises bother me. Particularly banging, high pitched noise, the ticking of clocks, water of a fish tank, voices, television, and snoring.

9)      Stress; if my stress level is medium to high, I will have instant pain. People’s moods affect my pain. Screaming, whining, loud noises, yelling, fighting, and the like increase my pain. Unwelcomed news increases my stress. Lies are a big trigger for me.

10)   Thoughts; if something is out of the ordinary, if plans get changed suddenly, if I notice something on someone’s body that is out of the ordinary, then my thoughts may overwhelm me to the point of exhaustion. My thoughts can trigger sudden onset of pain. When something I am looking forward to is suddenly canceled I am fine. But when something happens I wasn’t expecting, no matter how pleasant, I can get overwhelmed. Skin “issues” are a big trigger for me. I have an odd rash around my eye. I worried and fretted today about my eye, and collapsed on the couch from fatigue. I catastrophize in my mind, thinking of worse case scenarios. My sons have mosquito bites all over them from one hungry house bug we’ve yet to catch. And my chin is breaking out from that pig hormone. All this increases my thoughts.

11)   PMS; oh yes, the lovely word. The five days of hell for me. All my pain increases, fatigue doubles, negative thoughts increase, and basically I think the whole world hates me. My face and stomach swell up and I look and feel like the Pillsbury Dough Boy. This makes it harder for me to leave the house and exercise, which can lead to further fatigue and bring on depression. You’ll notice I do not post photos of me during this time. I also get cravings for chocolate! Not something I should really be eating.

12)   Chemicals; I have to avoid all chemicals in products and makeups. Thus the frizzy hair and minimal makeup. I get instant pain from inhaling chemicals in all forms. I have to avoid places with new carpet, paint, flooring, or other odors. Plastic smells are the worse.

13)   Information; I have to be careful what I read or watch. News or a film can deeply affect my mood, which triggers…you guessed it…my pain. People close to me have learned not to share sad news that doesn’t directly affect me. Some visuals I’ll never be able to get out of my mind.

14)   Noise; certain genres of music physically hurt my body. Dogs barking hurts my ears. Loud cars, especially motorcycles hurt. Too many people talking all at once, large gatherings with lots of conversations at the same time, all cause me trouble. Noise can affect me for the entire day, and may mean I have to stay inside the next day to recuperate.

15)   People; people affect me in all sorts of ways: their mood, their appearance, their smell, their mannerisms, voice, attitude, energy-level, facial expressions, spoken words. If my feelings get hurt, which happens more times than I’d care to ever admit, then I typically will feel pain somewhere in my body. If a person is sick, I might get phantom symptoms, even if I don’t know they are sick. If a person is happy or sad, I might start to feel that same way.

16)   Dread; if I am dreading something, particularly medical news, doctor appointments, or an upcoming outing, I will have trouble concentrating and relaxing. I will loop in my mind and spin in my thoughts. This will cause tension in my body, which leads to other problems. I have to get blood tests done about every six months to check my vitamin, protein, iron, and hormone levels. The thought of annual or biannual appointments for anything, sets me into a mini-panic.

So that’s my boring list.

This is boring.

This is pain.

Great movie Sliding Doors to watch when you are stuck on a couch!

And dang if that mosquito didn’t just buzz in my ear!!!