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(
4 thoughts on “To Start Where I Am”
“I know what you’re probably thinking.” I don’t think ANY of the things you listed. When I read your blog I think you are brave, creative, inspiring, wise, with a lovely, very cool sense of humour, hard working with magic woven into it all. And this is no blah to cheer you up and to be kind. It’s what I really think and feel.
I got no kids and no sickness with pain, and yet I often just sit at comp doing solitaire card games, coz they give me an illusion of sorting stuff, coz I am too tired and too sad for anything real. I hate that sadness and tiredness – it looks like laziness, but that just a small part of it (in my case definitely a bigger part than in your case…) I think I know why you are making lists and sorting them. Eg. it’s much more than doing nothing, when doing ‘real’ work is too much.
It is really hurtful to read how you’re putting yourself down. Don’t do that! It hurts you further. Be proud of yourself, you got reason to be!
And you don’t need to answer this! This isn’t meant to become another input in your inbox to add to your todo list. I just wanted to make clear that I think otherwise of you than you suggested. 🙂
Blessed be! ❤
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I’m actually sort of caught up on my to-do list after having done the things on it that truly mattered; like making sure everyone in the house has clean underwear and remembering to hide the good ice cream behind bags of frozen vegetables. (to keep it safe from those who do not appreciate it the way I do) You know, important stuff like that that….
Depression can really suck the life out of you!
Depression, chronic fatigue, and chronic pain are hard for people to understand. I once overheard a soccer mom murmur to her friend (after they walked past me) “She looks totally fine to me.”
These are silent illnesses and conditions that cause many sufferers to further isolate themselves. There are so many different causes/types of depression. Since my early teens I’ve been diagnosed with several different types of depression and over the years I have seen my fair share of therapists. I hope you have someone knowledgeable you can talk to. I’m not suggesting you get on three different anti-depressants at once like me (sad lol) but just sharing your feelings with a trusted/competent source can lighten the burden dramatically. When I was younger and going through a very difficult time, (many years before the pain issues) talking with someone regularly alleviated my depression to the point that I felt like a human being again. But shit happens cos life ain’t perfect. Ha! Luckily I have a really good therapist at the moment.
I want you to know that your words were kind and encouraging. I hadn’t even realized I was putting myself down until I read your comment which prompted me to go back and reread my post (which I never do because of those pesky insecurity issues). But your comment struck a chord. Especially this:
“I think I know why you are making lists and sorting them. Eg. it’s much more than doing nothing, when doing ‘real’ work is too much.”
That was a brilliant statement that made me look differently at the hows and whys I do the oddball things I do to cope with it all.
So I deeply thank you for that.
Blessed Be to you too dear Sister!
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You are right, I need to do something. Been to a threapist for 3 years and that was very good. I don’t have a diagnosis as such, I have my phases (and I think they are reactive) and I need to get out of my lethargy and do something for me regularly.
Socc them soccer mums!
Must go. Hugs! 🙂
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Hugs Back )O( ❤
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