Wednesday, May 28, 2008

Humpty-Dumpty Day

Tonight is my last dose of the reduction in my long-acting pain medication, hence the title of this post. I feel like Humpty-Dumpty getting ready to take that long tumble.

I should say that it hasn't been so bad, though. The first day after the dosage was reduced, though, I was tired, weak, and foggy. I spent a good portion of the day sleeping and watching movies. By Saturday, I was outside planting flowers. If tomorrow is like last Friday, I'm not sure I'll brave it and try to work. As it is, my energy is quite low today and I want to call in sick to my PT appointment. Back pain woke me up at 5:30, about an hour before I normally get up, and has been dogging me since then. I'm afraid of going over to have everything pressed on and moved again, but it is necessary. I've had much worse pain days than this, but that isn't much of a comfort to me when I feel my old friend rearing his ugly head. It may be leftover from Monday.

We went to Gettysburg on Memorial Day, a spontaneous decision that turned out very well. Instead of touring the battlefields, as I had wanted to, we ended up jammed in at the center of the historic district, at a table in a sidewalk cafe. We had close-up seats out of the sun (under an umbrella) for the parade. I don't normally like parades, circuses, amusement parks, or any place or event that draws a crowd, but it wasn't too bad that day. We weren't jammed in against anyone, fortunate as we were to be in the right pub at the right time to get an outside table in the shade. My camera malfunctioned - that is, I could not get it to film short video and then the battery died. By the time I remembered my cell phone camera, the Canadian band had already passed by as had many of the WWII vets. I gave up, but I did manage a few nice shots of people in period costumes (probably will publish later in the week or next Wordless Wednesday). How they managed to keep from fainting on the blacktop in the unyielding sun dressed in wool...I'll never know.

As for me? I wasn't ready to keep going after the parade. It was steamy out. On our way to get a much needed ice cream, we passed an elderly couple on the steps leading through the convenience store parking lot. She appeared to be in bad shape. I made a comment about the heat to get her to look up at me. I wanted to be satisfied that she was okay. She smiled and talked, enough that I knew she would be fine. We walked on and stood in the line inside the air-conditioned chocolate and ice cream shop, the heavenly aroma overpowering the sweat of our bodies. The small scoop I requested in a waffle cone ended up looking like a double or triple scoop. It was okay, because much of it melted as we walked back to the car. Mr. PL was smart; he got his ice cream in a cup. The treat cooled us off sufficiently for the trip home.

Well, I paid for the afternoon of sun exposure with joint pain that required Mr. PL to head to the pharmacy for some Aleve. Mind you - I'm not ever supposed to take NSAIDS because of my historic of GI bleeding. I couldn't take that locked-up pain feeling anymore, though. I knew I had inflammation going on, and I couldn't move. It's hard to explain that to someone who hasn't had it happen, but it's not a good feeling. Each attempt to get up from my post-trip nap resulted in excruciating pain. The Aleve helped and got me moving; I actually took another one yesterday for the lingering joint pain and feverish feeling. I'm on alert for any signs of bleeding, but so far I'm fine.

It's a strange path I walk, but I'm okay with it. My biggest problem is that I know it impacts my husband's life. He has to look out for me (when I'm not looking out for myself), make pharmacy runs, take care of the heavy business around the house (he and the Boy combined), and just watch me suffer sometimes. He doesn't get shielded as does everyone else in my life. I know it bothers him. And maybe, somewhere deep inside, he wishes his life were different. I hate the feeling that I impact his choices, his future, and his present. It stinks.

But I'm alright, really. I'll be off this medication soon, and then I'll still get by. Life will go on. I'll keep fighting. I don't have an illness that will kill me, but I do have an illness that makes the prospect of a long life something of an unbearable notion.

The latest book I read, 90 Minutes in Heaven, was very good, especially in the way the author described his new life with pain and many limitations. He helped me to understand that we just have to accept ourselves as we are now, and not mourn for ourselves as we were then (BP - Before Pain). And yes, pain is a very big part of our lives, a part that we have to suffer alone but that affects every part of our lives. It's a lonely business some days, but I'm glad I have Mr. PL. He does his best to make life bearable.

Peace - D


Daryl said...

I wish I had something clever or comforting to say .. I felt your pain, this post is very brave. I hope you do go to PT and it helps.


Jay said...

Ah - I feel for you. :(

I don't have such severe problems as you, but I have a glass neck (damaged top disc) and I have fibromyalgia. Constant pain for long periods, which cannot be diagnosed as anything particular but can be crippling. I can't take NSAIDs either. I'm allergic to a lot of stuff. I manage with opiates now and then, or paracetamol - which I think is called acetaminophen in the US?

Physical therapy can help, exercise helps me, and acupuncture can be useful too. Other than that. Heat and ice and rest. Gah. A magic wand would be nice, wouldn't it? Hugs to you.

Momma said...

Daryl - It's ok. I made it to PT this morning and life is good again.

Jay - Yes, I know fibromyalgia well. It's the diagnosis I was given in 1998, when they could really find nothing else wrong with me. And at the base of my skull, I also have a Chiari malformation that no one found until last year. At some point, that might require surgery, but OMG, I hope not. I've had 7 surgeries, 3 of them on my neck, and I would like to be done with all of that. I hope you stay well, too.

Peace - D

San said...

90 Minutes in Heaven. That writer sounds wise. It's always hard to accept ourselves as we are now, without hoping for the past, or the future. BUT your pain is daunting. I understand your concern for your husband, but I'm sure he married you "in sickness and in health." He married YOU. He loved your beautiful spirit and I'd lay a bet he loves you even more today. Not because you're in pain, but because your spirit is more beautiful than ever.

Momma said...

San - I certainly hope you're right. I would really hate to think that my issues would wreck an otherwise wonderful life for Mr. PL. By the way, I highly recommend that book. It was wonderful.

Peace - D

Lavinia Ladyslipper said...

You are so fortunate to have a caring and devoted husband. I know you treasure him; he is a treasure. Many people with pain, have no one. They are desolate; it must be unimaginable to have to go through this ordeal with no one by your side.

But your husband is lucky too, he has someone who loves and appreciates him so much. I truly hope you two can and do draw strength from each other, its not an easy path you trod. I'm heartened to know that you still try to get out and do things; many would have parked themselves on the couch and given up.

You have a lot of perserverance and I admire that. I'm really sorry for all the pain, and how debilitating it is. Life is really not fair, is it.

Momma said...

Lavinia - Today is a much better day. And yes, my husband and I have always had a good bit of give and take. When one is down, the other pitches in. It's good that way. It's simply my own wondering that keeps me thinking he could have done better.


Peace - D