It was a Hitler kind of week

I unintentionally lost seven pounds in six days last week, my only other symptom of illness being fatigue so severe that it kept me in bed for much of the time. Because I regularly take pills for nerve pain, pills for arthritic pain, and pills for sleep, along with marijuana and strong narcotics, my first thought was liver or kidney failure, so I stopped taking everything. I knew I would be in more pain, but I had no idea how bad it would get. My shoulders, my back, my hips, the hand that I broke last summer, and my upper legs and knees, were all screaming at me, and I could do nothing for them. When I couldn’t sleep in bed, I moved to the recliner that served as my bed for eight months out of the twenty-four that I was having surgeries, but I couldn’t sleep there either.

I didn’t want to go to the doctor because there are a lot of bad colds going around, but when four days passed, and I was little improved, I decided that I had to go because I wasn't holding up well under the pain, and because I thought I might be so ill that my life would be jeopardized if I waited. He took some blood tests, and I went home to await the results, practice having made me fairly stoic about such things. Peggy came down with a cold that night. The tests came back yesterday, and to my very great surprise, they were normal. The doctor speculated that, whatever the initial problem had been, my later fatigue and weight loss had been due to narcotic withdrawal, so I’m back to taking pills and eating marijuana cookies (but no narcotics). If not for the pain and fatigue, I would have enjoyed seeing the universe without a haze around it. I hadn’t realized how absent from the external world I had become, even though it had been a welcome absence for the most part. I mean, between hurting bad and being loaded, which would you choose? Duh. 

When people talk about the redemptive power of suffering, I think they’re full of shit. Theyre invariably people who have no firsthand experience of what they’re talking about, at least when it comes to bad chronic physical pain. Imagine that you have the worst toothache you’ve ever felt, that it’s untreatable, and that the only thing that will even reduce the pain by half might cause you to sicken and die. Is there anyone on earth who imagines that he would gain from that? If there is, bring him over, so I can slap some sense into him. My life is a war of attrition, and every year I lose more hope, feel more pain, and become more disabled, and Ive yet to meet anyone in my situation who is doing any victory dances

I can’t say that pain hasn’t given me insights, but they’ve been insights about how really bad life can hurt, how little can be done about that, how little support anyone can give, and how utterly tedious it all becomes, both to the sufferer and to everyone he looks to for support. I never dreamed that my life would turn out like this. Quite the opposite. I thought I would be strong and capable almost until I died, and now Im wondering how much longer I will able to clean house. It took me three days last time, and it’s not even a big house. 

I think it likely that the only thing that keeps me alive is Peggy (Im grateful for this), but she is also the person who suffers the most because of me, and that alone is enough to bear. I can only justify my life by bringing good into hers, and I rarely feel that I do particularly well. I have observed little difference in whether pain is physically or emotionally based because either way, the struggle to overcome (or to at least adjust) is likely to be longterm, intense, and a pain in the ass of ones partner. I guess I can give myself credit for doing the best I can, but how would I really know?

P.S. Yes, I understand. I could be worse off, much worse off. I probably know that better than those few who try to remind me of it because living with pain has improved my ability to sense pain in others. It’s like if you bought a red Toyota Camry, and all of a sudden you notice how many red Toyota Camrys are on the road. But, more than that, you have become deeply interested in red Toyota Camrys. Rather than bore me, people who tell me about their pain fascinate and encourage me.

You who read this blog regularly will remember that I had a period last summer when my pain level dropped by 90%. It lasted for about three months, and since then, the pain has kept getting worse. Those three months were the first time in a few years that I had seriously dared to hope, and when the pain came back, they just made it the harder to bear.


Snowbrush said...

Now, Rhymes, don't go reminding me that naughty words are only for people with a limited vocabulary. I think you had every intention of cracking me up with that one, and you did. I don't curse on your blog because you don't want me to, but you can curse all you want to on mine because I'm an atheist and don't care.

lotta joy said...

Snow, you said: "I had seriously dared to hope, and when the pain came back, they just made it the harder to bear."

I'm here to tell you that Hope will kill you.

Through my life I was told I wasn't healed through prayers because:
(1) I didn't have faith
(2)I didn't pick up my bed and walk (3) those praying for me didn't have enough faith
(4) I had been chosen to suffer because I had been a warring angel in a prior life, and god knew I could bear it
(5) Because MY suffering allowed another person to live a blessed life of good health.

The fifth comment was spoken by a nun and I had her physically removed from my hospital room.

My many health situations now include deep tissue charlie horses. And when I say DEEP, I mean in my breast, rib cage, and RECTUM! YOWZA!!! I sure can't walk that one off!

But I'm sure that my suffering means I've spiritually allowed someone else to avoid the giant horrors of hemorrhoids.

Thank you Jaysus!! Gawd is GOOD!

Snowbrush said...

"I'm here to tell you that Hope will kill you."

You were hurt by religion in a very different way than I, although we both bear our wounds (some of them might never become scars). I would say, though, that my trouble with religion is more present day than back when I felt that friends treated me dirty because I no longer accepted Jesus. I wish for you that you could join the FFRF because you would learn so much from them. They had an 850 person convention 100 miles from here recently, but I just didn't want to go to the trouble and expense of going up there alone, and the one person I asked couldn't go. It takes encouragement for me to face large crowds anymore because they take more energy than I can cheerfully give.

kylie said...

My Dear Snow,
I read a post like this and my heart sinks and I want to say "have you tried......"
but I know that you have tried most everything and I know that after a while you just need people to accept you and what is happening to you without making suggestions.

I am so sorry it is that way for you and I still hope against hope that something will change. Its amazing that we can sometimes cure cancer but we cant control chronic pain.


Snowbrush said...

"I know that you have tried most everything"

Not everything, certainly, or Peggy and I would be broke by now. A third of the people tested for most treatment respond favorably to placebos, so even if someone says that such-and-such has helped them, I don't know if they're correct, so unless I can find something more substantial than anecdotal evidence, I'm probably not interested, and I have probably already considered it too.

"I am so sorry it is that way for you and I still hope against hope that something will change."

I still do too, and have been thinking seriously about going back to QiGong since I got better while doing it. Going back would enable to test whether it was the QiGong or something else that made the difference.

ellen abbott said...

I'm sorry to hear your respite this summer was only that and not permanent. I can't imagine what you endure on a daily basis. And of course I do wish better for you. The medical community has made such great advances in some areas but they seem mystified when it comes to chronic pain. I don't know if this is because it is so mysterious or because they just have contempt for people who suffer that way.

Charles Gramlich said...

Pain is always best when it is in the past. I'm sorry you're hurting man. Wish there was something I could do.

rhymeswithplague said...

Imagine my surprise when your first comment was addressed to me and I hadn't even said anything yet.

I am presuming that when you say it was a Hitler kind of week you meant it was pure heil...

Well, I thought it was funny.

CreekHiker / HollysFolly said...

I think most people are incapable of understanding the pain of others and that's yet another reason so many of us feel so alone.

I'm so sorry you are having such a hard time! Have you considered that the heat and cold may be a factor??? Hope something improves.

Found your comment on Peggy's cold hilarious in that I too am a germophobe!

Snowbrush said...

Hey, Ellen. Hey, Charles. I'm going to visit youse guys real soon.

"I am presuming that when you say it was a Hitler kind of week you meant it was pure heil.."

Well, it was hardly a Nazi camp, but you get the point.

"Well, I thought it was funny."

Good. I certainly laughed as I wrote some of it, but I never know how many people are going to appreciate (or even be aware of) my humor.

"I think most people are incapable of understanding the pain of others"

It's a lot to expect of them. I know I can't understand what it's like to be in battle or to be told that I have a terminal illness. Some things simply have to be experienced.

"Have you considered that the heat and cold may be a factor???"

I just wish I had a Lear jet so I could fly to Yuma and I could see how I would feel away from the dampness here in Oregon.

"I too am a germophobe!"

Colds are a serious matter for me. Whereas Peggy is better the next day, I can easily stay sick for a month or more, so when I'm having problem already, I really, really try to avoid colds.

PhilipH said...

So sorry that your chronic pain has increased Snowy. Desperately sad to read this post.
I cannot possibly know how how bad life is for you at present but I recently experienced deep distress when my daughter Clare suddenly had an excrutiating pain in the top of her head.
I took her immediately to A&E. All the while she was unable to move her head and I could almost feel the pain myself.
She was given some morphine via a drip and later went for two CT scans. The doctors suspected bleeding on the brain, apparently one of the causes of severe pain in the skull.
She came out of the scans with no sign of bleeding, and the tumour was much the same as a year ago.
Great relief for all of us. She is OK now, but that PAIN was unbearable for me, as well as Clare.
All I hope is that YOUR pain eases as soon as possible.

Snowbrush said...

"I recently experienced deep distress when my daughter Clare suddenly had an excrutiating pain in the top of her head."

I know that you would have unhesitatingly bore her pain--and her tumor--if only you could, just as you gave up your home to be near her. Likewise, I am glad that it is me with these problems instead of Peggy. For all I know, she might bear them better than I, but I had still rather it be me. I'm tempted to say that men evolved this way, but that would be to ignore the so-called honor killings done by Moslems.

Helen said...

Dear Snow,
I hate it that you are in serious pain .. again. I'd never considered the hot/cold implications ~ humid/dry factors. Very interesting. Have your health care providers ever suggested a climate connection?

Loved the comment you left on my Burlap ditty ... and the kids stood still because they had been told to made me laugh out loud. In spite of it all, you still tell a good story. If ever I get over the Pass and into your part of Oregon, I promise you a cup or mug of 'something yummy' .. my treat!

Snowbrush said...

"Have your health care providers ever suggested a climate connection?"

No, but I've been pretty much on my own, doctor-wise, for awhile. All they ever offer are drugs, physical therapy, and more surgeries, and I don't want to waste more money on physical therapists, and I sure the heck don't want to go through any more surgeries. I mentioned somewhere up the response column that I anticipate a return to QiGong, and I'm also looking at adjustable beds. Aside from those, I'm out of ideas at the moment.

Mim said...

id been hoping your pain problems had gone away forever and am sad to see that they are still around. I like the climate connection thing - go spend some time in hot and dry arizona and see what happens.
Despite it all, I hope you had a good thanksgiving day and ate pie and turkey and other good stuff.

angela said...

So sorry the pin has come back with a vengeance . Your right unless you have been there you cannot understand how crushing the pain can be. The if I take the pain pills it will make me feel better temporarily but the damage it's doing will be worse for the long term. I hooe you find that happy medium soon. Xxxx

All Consuming said...

"When people talk about the redemptive power of suffering, I think they’re full of shit." - Indeed. And if they have got pain, and still beleive this then they are the kind of people who like a bit of martyr with their toast in the morning and can, in my humble opinion, sod right off away the hell from me.

Kerry said...

Sounds just awful. I hadn't realized that your respite was a mere 3 months. It does make it harder to bear.