Wow

Started reading back through my blog and found tears running down my face. So many painful things. But I'm so grateful that I've written through a lot of these things. Perhaps the pain won't ever go away, but there is something healing in writing through your struggles.

Description of Chronic Pain

The following post is a quote from "Anonymous" on the following Blog post:

http://askanmd.blogspot.com/2009/10/never-say-10-how-doctors-interpret.html

The article was about the pain rating scale used by doctors. Whoever Anonymous is wrote, I thought, brilliantly on the subject of chronic pain. In my opinion, perhaps the worst thing about chronic pain, beyond the pain itself, is the inability to know the timeframe and/or purpose of the pain. Labor, though horrible pain, has the purpose of bringing forth your new child. No matter how painful it is, you know that it will end with the presence of your baby, that you will recover, and life will go forth. With this pain, there is no timeframe. No one can tell me when it will end, how it will end, what good will come from this suffering. My mind can go to horrific places when I start down the path of thinking that every single day of the rest of my life will be like yesterday, when I broke down crying in Walmart because the pain was so bad that I didn't know how I would make it from the pharmacy out to my car. I look healthy and fit, so no one can tell by looking at me that my body and spirit are in tremendous pain and that some days just are not fit for living.

At any rate, I leave you with Anonymous' comment, because whoever he or she is, the description of chronic pain is incredibly accurate and well-written. And their description of its effect on his/her children is dead on:

"And it doesn't just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge."

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"Anonymous said...

I wonder if one of the biggest challenges with classifying pain is the fact that there are 2 types, transitory & chronic. Transitory pain can be excruciatingly awful, such as a broken bone, or a migraine, or childbirth... but it goes away. A few days of medication, and there is a resolution. It is clear that it can be "fixed" by drugs, breathing techniques, meditation or distraction techniques.

Chronic pain is a trickier beast. If you have a rock in your shoe, it is not a pain worth metioning. It is a 1 maybe a 2. The assumption is that the rock can be shaken loose, that the foot will soon be comfortable again, since it is a small pain. It isn’t much, really, just a little thing. An aggravation in your shoe.

But it isn't a little thing at all.

At first, it is an annoyance, really. An aggravation, if you tend towards anger. But after a while, the pain dominates your thinking. All you can think about is how long until I can take the pebble out of my shoe.

You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower. When that doesn’t work, you walk faster.

You buy better shoes. You buy a cane. You take Tylenol, and Advil, but the pebble is still there.

You try hopping. You try crawling. Still a pebble.

Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining.

“What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? I can barely think past the constant background noise of the pebble! How am I supposed to work as well as I used to?

But of course no one else can see the pebble. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Pain is a transient thing, after all. No one could REALLY be in pain ALL the time.

Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say.

Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

Chronic pain doesn't have to be a strong pain to have a strong effect on your quality of life. Even a chronic pain of 2 or 3 should be taken as seriously as a chronic pain of 7 or 8, because your life changes in so many ways.

And it doesn't just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.

It doesn't have to be a 10 on the pain scale to be a 10 on the "negatively affects quality of life" scale. If a doctor can give me back my quality of life by medicating my pain, even if my pain isn't a 5 or higher, then why on earth would they choose to not medicate it? Why would one force my kids to make sacrifices in the richness of their life experiences just because one thinks my pain isn't strong enough to warrant treating with anything more than over the counter meds? If OTC meds were working for me, I wouldn't be in the doctor's office saying I'm in pain and please help me do something about it. I'd be out there doing fun stuff with my kids and enjoying my life to the fullest. Yet, being young, and female, and diagnosed with fibromyalgia among other things, I find it next to impossible to get adequate pain control, and our lives are the poorer for it."

From "In Sickness and In Health: A Place for Couples Dealing with Illness"

Excerpts from an article in the 10/15/09 Times Online

Until her sickness do us part: why men leave ill partners

Men are seven times more likely than women to leave a seriously ill partner, a study has found. So why are males less able to cope?

According to the Office for National Statistics, there were 144,220 divorces in the UK in 2006-07 (the latest figures available) and, of those, about 18 per cent (25,959) were due to “family strain”, a term that includes serious illness. In the US, a survey by the National Centre for Health Statistics found that 75 per cent of first marriages end in divorce if one of the partners develops a terminal or chronic illness.

Although it is not stated in these divorces which partner was ill, a study published last month in the journal Cancer found that a man is seven times more likely to leave than his wife if the other becomes seriously ill.

What causes this apparent chasm in emotional coping mechanisms between the sexes is intriguing experts, and the theories are plentiful.

Indeed, a study in the Journal of Oncology last year reported that spouses were lonelier than their ill partners and had lower levels of wellbeing and marital satisfaction. There is an immediate shift in a relationship when an illness is diagnosed. You stop being partners as you knew it and move to being patient and carer. That can lead to feelings of fear, not just about the disease, but about the relationship and the well partner’s ability to cope. Feelings of anger and resentment about life and the situation can quickly arise.

A few researchers have suggested that men are more likely to walk out on a wife whose condition is newly diagnosed because the illness is more than they bargained for when they married.

There are suggestions, too, that traditional roles shift more significantly when a woman becomes ill. Men may still be working full time, but may have to cope with additional tasks such as ferrying their wife to appointments, arranging childcare, cleaning and doing household duties.

What a women wants most of all when she is ill is not so much for her husband to take charge, but for him to listen to her feelings and to express his own more often. Men have an urge to ‘fix’ things. They want to get in there and make it better when what they really need to do is shut up and listen. Even if you have heard it one hundred times before, your wife needs you to respond by saying that whatever happens, you are there for her.

For some people, illness proves a positive factor in bringing a couple closer together. One recent study at the University of Quebec found that 42 per cent of couples thought that the experience of breast cancer had strengthened their partnership. Accepting the changes that take place is a process that takes time and effort. But many people do find their love grows stronger as a result.

"Hold My Heart," Tenth Avenue North

How long must I pray, must I pray to You?
How long must I wait, must I wait for You?
How long 'til I see Your face, see You shining through?
I'm on my knees, begging You to notice me.
I'm on my knees, Father will you turn to me?

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart?
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart

I've been so afraid, afraid to close my eyes
So much can slip away before I say goodbye.
But if there's no other way, I'm done asking why.
Cuz I'm on my knees, begging You to turn to me
I'm on my knees, Father will you run to me?

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart?
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart.

So many questions without answers, Your promises remain
I can't sleep but I'll take my chances to hear You call my name
To hear You call my name

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart?
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart.

Hold my heart, could you hold my heart?
Hold my heart.

Hearing from me, hearing from God

Someone reminded me a few weeks ago that it's been a long time since I posted here. Part of that may be that it's just really hard to concentrate on what I want to say when there are three kids and two dogs who are all constantly vying for my attention. (one dog barks incessantly - that's the one Adam calls "Toad;" the other one is tall enough to walk under my arm as I type and use her head to shove my arm upward away from the keyboard. I'd take it as a subtle hint that I'd been online too long, but she starts it as soon as I sit down at the computer).

The other part of my absence might also just be that things haven't changed. For the better, at any rate. My faith feels lost; the pain does not. I used to wonder how long I could continue to wing my prayers upward, prayers for pain relief, prayers for energy, prayers for patience. Now I just don't pray.

It's odd to me, though, that the weaker my faith has become, the stronger my honesty has been. I find myself being truthful at the oddest times. I think it all started when I was on my way out the door for our church's women's retreat. I really didn't want to go...my faith was already on life support at that point. Adam forced me out the door, and before he shut it, he said, "And don't lie. When people ask you how you're doing, don't lie."

Because I usually do. I usually say I'm fine or smile and say, "Good." But I'm not. I'm not fine, things aren't good. I don't pray, because I just don't think God cares. I don't tell people that I'll pray for them because I don't want to be a liar or a hypocrite. I don't spend time in God's Word because I don't find any hope there.

A dear friend wrote me an email a few days ago. It took me a while, but I finally responded and was pretty honest in my assessment of how things were going. She wrote back today urging me not to give up, not to stiff-arm God. Rely on Him, find hope in Him, she urged. I haven't written her back yet because the only response I have is that I think it's just too late for me.

I've been reading a book for the past few days. It's one of Jodi Picoult's books. I love her writing...you cannot skip a sentence or even a word, because every word, every sentence has meaning. I love authors who don't waste words, and she is one.

At any rate, in this book, the mother goes to her daughter's school because the daughter has had an incident for which the teacher has called home. The daughter is disabled, suffering from a genetic mutation that causes her bones to be extremely fragile, and the family is split on whether the mother should be suing her OB for not identifying the disability earlier in the pregnancy and giving the mother the option of terminating the pregnancy. (all background to establish the amount of strife and heartache present in the family).

The teacher explains that some of the students were playing house at school. Two of the students were role-playing the mom and dad and they wanted the daughter (who was tiny in size because of her disability) to play the baby. The daughter was upset about being labeled a baby and had an outburst. Explaining the situation to her mother, the daughter says,"I didn't want to be the baby. I wanted to be the dad."

Confused, the mother asks, "The dad? How come you didn't want to be the mom?"

"Because moms go into the bathroom and cry and turn on the water so no one can hear them."
"Handle With Care"
Jodi Picoult
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Yes, some of us do. And some of us just die quietly inside and hope that no one can tell.