To Start Where I Am

Since chronic pain came into my life 9 years ago, I’ve been trying to deal with a new way of living and with it a whole new way of thinking. And I’ve done a lot of thinking in the past few weeks as I’ve hit some highs and then some low-down lows.There were times in the past week and a half that I couldn’t get out of bed. There have been days in the past week where light and sound were excruciating to my senses. Two days ago I dropped a dinner plate when my hand spasmed and all I could do was helplessly look at the shattered pieces on the floor.

The feeling of helplessness just builds up…and up…and up….

When I’m having a really bad episode and all I can do is lie in bed and stare at the ceiling, I notice a cobweb in the corner. I’ll turn my head and see an empty water glass that needs to be washed. When I turn the other way I see that my closet is messy. For days, sometimes weeks, (at one point about five years ago it had been almost 6 months) my eyes and mind will focus on all the imperfections in my home and see it as a reflection of me as a person. Me as a wife and mother and how I cannot care for those I love the most.

Then when I begin the upswing of good days, I can’t simply snap my fingers and make all the stress disappear. I fill up with anxiety every time I see my overloaded inbox, the empty refrigerator, and the giant piles of laundry. Then I’m like a lot of chronic pain sufferers in that when I have one decent feeling day, I will run around frantically trying to catch up. I’ll clean like a maniac in hopes I can get it all done before the pain returns. And it always does, and at that point it’s usually pissed.

Even after all these years, I’ve yet to fully come to terms with my illness and pain. I’ve read countless books on my conditions and have seen the top specialists. I’ve been coaxed into getting reacquainted with my body (a body that seemed to no longer like me) in order to be more in tune to our (its) rhythm. I’ve learned about energy management and how to create a schedule that works for me. I have seen the need to pattern my week so that I have active days followed by more restful days. I know I have to to do a little bit at a time to prepare for holidays, vacations, or long, hectic days. (I’m eternally grateful that things were good for the California trip) I’ve been schooled in the ways of expressing what my needs are and how to drop my pride when I have to ask for help.

Easier said than done.

I readily grasped the idea to make an outline for my life. I’m excellent at brainstorming ideas and making plans and schedules, but I’m absolutely terrible at following through. You see, I’m a list-maker. I LOVE to make lists. I have a list for nearly everything. Things I need to do, things I want to do, things I need help with, menu planning lists, shopping lists, need to follow-up on lists, home project lists, and on and on it goes.

During the bad times I’ll have short-term memory issues and terrible brain fog, getting easily confused (especially with dates and phone numbers). So I have spiral bound notebooks in every corner of the house (and in my project studio, but let’s not even go there) so that I can jot down ideas and plans as they come to me. Then when I get too many of these ideas and lists and sketches scattered about, I will tear them out and slip them into clear sheet protectors and then place them in the correct three-ring binder, complete with labeled tabs.

Then after I have everything in order, I don’t know where to begin. Which binder was the kids’ back to school supply list in? Where was the list for treatment plans? Where was the mind-map for my dream week? This eventually leads me to the fact that the current organizational system isn’t working.

So I’ll spend time flipping through the shiny plastic coated papers and sort them into new categories. Then I’ll begin to rearrange the tabs, like I’d like to rearrange my life.

I know what you’re probably thinking. That I’m a control freak. Anal. OCD. Manic. Micro-manager. Perfectionist. Hypercritical. Persnickety. Wonder Woman Wannabe.

I raise my hand in surrender. I’m all of the above…most of the time.

So here I go again. I have pared down to one small binder and I’ve put the other binders away. I am back to the basics with my original, simple day to day plan. I know it works because some of my best months in the past few years have been when I followed it. The problem has always been easing back into the routine after being out of commission for more than a few days. The perfectionist in me doesn’t want to just jump in where I am. I want to start with a clean, perfect house. I’m even sure there is such a thing. Or I think it’ll be best if I start at the beginning of the month. Or after ___________.

Well it’s Monday. I suppose it’s as good a day as any to start. I got out of bed and showered. I even followed my ‘routine’ for the day. I’ll be honest. I had a little bit of difficulty following my plan today. It wasn’t hard remembering what needed to be done, but hard to pace myself. To not panic. To not work ahead. To make myself stop between things. To not do two things at once. To have realistic expectations. And to celebrate the small successes as long as I was making progress.

Today wasn’t perfect, but I think I can call it a success.

Many Blessings on your Journey )O(

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The Swamp Thing; Sweat, Tears, and Triumph

I think back to my sappy post from a few weeks ago and am amazed at what all happened between then and now.

I will admit that yes, my husband is sweet and caring and thoughtful and good in bed. And yes he missed us like crazy while he was gone. Yet I found myself rolling my eyes when I saw the fourth text from him within an hour. Wasn’t he supposed to be busy doing all that fancy biomedical training?

He left us with big hugs and kisses and even the sweet little journals, but he also left the pool looking like shit. I mean Swamp Shit. I asked him for weeks if he could get the pool up and running before he left on his trip. I never really paid much attention to what he was actually doing, just that he was working on the pool. Besides, he knew what he was doing. And what a relief, because it was going to be getting hot and the kids were going to want to swim. Come to find out after he left (he was lucky he had already left the state of Oregon) he actually filled it with water after almost a year of non-use. My only guess was that he thought he could do shock treatments daily and the pool fairy would come in the middle of the night and voila! (I’m sure there is a pool fairy, but she’s probably a smart, sassy undine who didn’t want to help him anyway). He had to have been hoping I didn’t go and look over his shoulder or check on the progress he wasn’t making. Honestly, I don’t know what he was thinking, but I sure as hell know what I was thinking.

It was very warm that first week, and the kids were wanting to swim so badly. But after one look at that nasty water I knew I wasn’t letting them so much as dip their big toe in that pool.

So I did what any crazy Mother Bear with fibromyalgia, CFS, ruptured discs, spine hardware, and an “I’ll show him”attitude would do and spent the day draining the pool. Early the next morning I scrubbed and shop vac’d as much and as fast as I could because I desperately needed to refill it before the plastic hardened (the temperature was going to reach the high 90’s that day). I refilled it, scrubbed and rinsed both the filter and the pump and sprayed out the skimmer. For the next several days I spent hours using the broom and net. I checked the chlorine and pH, and added more chlorine. The levels were fine but there was still some debris floating in the water. The skimmer wasn’t doing as good a job as I had hoped. It was also still a bit cloudy. So I gave it a dose of shock treatment and by the next morning the water was clear but all the the debris had sunk to the bottom forming a gross sludge.

Here I was at the end of week one and also at my wit’s end. But I wasn’t about to give up. I began rigging a pool vac. I had no idea what I was doing other than slowly morphing into an absolute lunatic; but I was cleaning that pool even if it killed me. I had wielded my nightmare into becoming my quest and I spent 5 hours, a ton of duct tape, an extra garden hose, pool hose, and shop vac hose…. and after a ton of trial (the original pool vac was completely useless by the way) and error, cuss words, and more trial and error, I must say I’m proud of the crazy looking thing I thought up. With a good siphon trick, (with a little added suction boost from the pool fairy who had been watching all of my hard work and was obviously now on my side) I was well on my way to victory. I was going to conquer the monster from the bottom of the pool and the demon within.

Towards the end I felt a burst of much needed energy as I pictured my significant other sleeping at the Marriott getting fresh towels daily and his bed made for him. I was sure he had already swam plenty of times while I had been here working my butt off so that our kids could get the chance to. He was fed meals during his classes and given a $27.00 per night dinner allowance while I was too tired and in pain to cook, doling out freezer meals to the kids that I had warmed in the microwave.

Several hours after I had finally finished the pool my husband called. He asked why I hadn’t answered any of his texts. I curtly responded that I hadn’t had much of a chance to look at my phone. Without much pause he told me about his Sunday afternoon. He went for a walk to the city center where he decided to watch the new Star Trek movie and then wandered around the mall for a while. Then on his leisurely stroll back he sent me pictures of the scenery, the park, the neat statues, etc. He then made an offhand comment about me sending him some pictures of myself later on.

That was it. I felt like an enraged cartoon character (think Tom the blue cat or Wile E. Coyote) red with anger, whistling like a steaming hot tea kettle about to blow. I had held it together, kept my complaints to a minimum, was supportive of him. But now all bets were off. I spoke through a clenched jaw to keep my voice down as I explained to him what kind of Hell I had been living in. My fingers were cracked and raw from all the stupid tape and I had a horrific sunburn. And on and on went my tirade. I felt so much better afterwards and had a good cry. All while he was still on the phone.

I had done one of my crash and burn cycles plenty of times before, and I spent the next 7 days recovering from the pain flare that I caused myself. The kids did get to swim a lot the next few days while I lounged in the adirondack watching them splash each other and play “shark”. All I needed then was a cute straw hat and an ice cold lemonade.

And as much as I hated to admit it, I also felt a deep need for my husband. Maybe it was my triumph. Maybe I was proud to prove to him I could do it. Perhaps it was because I realized I had the strength to do something so physically challenging by myself. Or quite possibly it was after faithful daily Qigong practices of the 8 Brocades, some heartfelt journaling, meditation, a myofascial release massage, and extra helpings of pain medication and supplements. Maybe a combination of all those things. All I knew was that I actually missed the lazy ass.

Many Blessings on Your Journeys of Triumph )O(