Grateful

"I should be like Jillian and tell you to suck it up."

Dearest one is helping me get through my Ten Minute Workout by keeping track of the stopwatch. Meanwhile I am belly aching about my thighs being on fire and I've only been doing the first pose for day one for 30 seconds.

I've been looking for something I could do on work days that wouldn't take a lot of time and would get my exercise in. My parents are both on diabetic meds and I don't want to follow in their footsteps. If I exercise every day it seems to help my blood sugar levels stay within normal range. The first day I miss they start going up. I only have one kidney and as diabetes is not a kidney friendly disease I am determined to keep one step ahead of it. Exercise is not the whole answer but part of it. Among other things, eating too much of certain fruits seems to affect my blood sugar levels, too. I do like cherry season but it doesn't like me!

I've been trying to figure out a morning schedule that will work for me once I start back to work next month. Getting up at 5 AM used to work fine. Then the time change happened this past spring and I just couldn't seem to get rested enough to get up that early. I'm determined to get up at 5 AM for several weeks before I go back to work and fine tune my schedule. Cutting down my exercise time on work days makes room for writing and centering prayer; two things important to my well being.

This morning I went for a walk and remembered the days when going for a walk, fine tuning a schedule or considering a work out regime were out of the question for me. I was instantly filled with gratitude. Yesterday, as I was painting our bathroom I caught myself with the brush above my head and was grateful I could do it. There was a time when lifting my arms above my head to shampoo my hair was the sum total of my ability to exert energy some days.

I am ever so grateful when I have some perspective.
Today is one of those days.


Photo Credit

Hearing Myself Think

Moments into being at my home group AA meeting yesterday I shared laughter with friends. Instantly I noticed just how tight and tense I had been. I'd had several days of appointments with people who cut through the crap with me which left me facing stuff that I'd like to ignore, but that wouldn't be the wisest choice, would it? Thank goodness God gives grace for the situation and not the imagination.

Good meeting. Great people. Good sharing. Just what I needed.

This morning I have no spoons. Not sure I have the energy to even have a shower. A day of gentle self care is in store. We spent the day yesterday helping oldest son and his bride of nearly a year(!)move into a bigger place. It felt good to not be the one moving. In the midst of cleaning I realized that 16 years ago on that day we moved. That was 4 houses ago now. Anyway, as I cleaned I was totally happy to use one of my favourite cleaning products. I am no house cleaner. I have stuff all over the place. It is a struggle for me to have a clean house on any day. But using that product makes me smile and gives me a feeling of accomplishment. The shine can't disappear in a day.

I have one more week left until I go back to work. I had planned on a quiet week of no appointments, no outside the house happenings, but that dang tooth that I broke the other day will need attention tomorrow. That's when my dentist returns from holidays and my mouth/throat/neck gland is pretty sore on one side already. I had thought because the broken tooth itself didn't hurt it wouldn't hurt to leave it to get attended to until the dentist came back from vacation. However, every time I talk, swallow, eat, or drink, my tongue runs over a sharp edged crater. It's done it so much I have a canker sore on the underside of my tongue. In an effort to not be in pain I am talking much less.There's a conspiracy in there somewhere!

Youngest son moved to town yesterday, to join oldest son and his bride at their new digs. We are now empty nesters. I have mixed feelings about that. More positive than not but it is an adjustment. When people hear that both dearest one and I drive 150km round trip daily to work they ask if we've thought of moving to town. We have, but we value our privacy and quiet out here on the farm. Of course at the end of a work day we'd like to be a 10 minute drive from home but in summer and on weekends, when we don't have to go anywhere, it sure is nice to sit on the deck or around a campfire and hear ourselves think.

Which is the only thing I'm going to be able to do if I don't get my tooth fixed soon.

Six Words, Six Words, Six Words

Weary body, tired mind, spoons needed.



~ Show My Face.

Rays Of Gold

Rays of gold are filtering through the trees
as I sit here and type.
It's a comfort to have the sun waving good morning as it rises.
Today will be a pajama day for me as there are nearly
no spoons to be had.
I'm still nursing a sore throat and swollen glands from last week.
My lungs have been hurting every morning, too.
A full day of rest and extra gentle self care should make a big improvement in my spoon supply.
The energizer bunny will be happy to sit on my lap all day.

I did win that book contest I entered last week.
How cool is that?!
Some days I sit and think what a difference, how much bigger my world is, because of the internet. In the years where my every waking moment was dictated by my health the blogging community kept the isolation at bay. The best part is how much bigger my God is because you've shared your journey with me.

Phone Karen

The handwriting's mine. Written between cocoa and ferret food on my grocery list. I wrote it in a hurry one day last week hoping that if I put it on paper where I could see it, I'd remember to call. I never did.

Karen passed away yesterday.
I found out this evening.

We hadn't known each other long in terms of years of friendship - only the past 5 years - but we shared a bond of understanding that was of the forever kind. Although we lived in neighbouring communities our paths hadn't crossed until then. It took the internet to get us connected. When I was first having health issues and trying to get a diagnosis I posted a message on a forum for people diagnosed with PH, an illness bandied about by one of my doctors. One of the people on that message board wrote me to tell me that Karen lived close by and might be a good contact person for me. Was she ever.

Her story mirrored mine to some extent. She spent 4 years trying to get a diagnosis only to be told by one doctor to go home and get a life because there was nothing wrong with her. By the time she got diagnosed with PH her disease had progressed so far that medication couldn't halt it's progression. She was soon put on a waiting list for a double lung transplant. Fucking, fucking doctors.

Karen was my cheerleader. Because she had been doubted by doctors, which fed her own self doubt about whether it was all in her head or not, she was so supportive as I tried to get a diagnosis of my own. When I had a doctor look at me and tell me either I had all these funky things or I didn't and maybe I was simply hormonal (and he leaned towards the hormonal conclusion) Karen was there to listen to me cry and vent. In turn I could listen to her as she still doubted the seriousness of her illness, still worried that the fever she had or the abdominal pains were all in her head and she shouldn't bother the doctors. She knew I understood how it screws with a person's mind when the powers-that-be send you home like a chastened child. There was always a hint of this self doubt no matter how sick Karen got. I think it only left during the times she ended up in ICU.

Karen was there as I gave up on getting a diagnosis and stopped going to the doctor. She had done that herself at one point, too. She was also there to listen as my health declined. Eventually I got to see the doctor who was instrumental in getting her a diagnosis. This doctor believed me and told me she would be with me no matter how long it took to get it figured out. Figuring it out took 9 trips of 1500 kms each between June and November of that year plus a 10 day stay in a hospital far, far away. Eventually I had the gold standard test for PH and was found to be borderline. I remember the doctor telling me that even if my numbers had been higher he wouldn't do anything about it until the numbers got much, much higher. The medicine needed to treat it was so expensive that the government wouldn't pay for it before then. I looked at him and said, "so it's a crap shoot really - take me to the brink and then see if the medicine will bring me back." He nodded.

He did run every test he could. They even flipped me upside down for a second spiral CT scan of my lungs looking for the place where my blood vessels were bypassing picking up the oxygen. He was the doctor who referred me to a cardiologist who was so thorough in her listening that it led to a referral to a geneticist and eventually to a diagnosis. A diagnosis that scoops all kinds of funky health issues in because Elhers-Danlos has to do with the glue(collagen) that holds everything, even yours eyes, together in your body. When that's defective there's a never ending list of things that can be funky. I was thankful that funky won out over hormonal. Karen and I had a pet name for the doctor who had previously dismissed me. He had once treated her like a piece of crap, too.

Karen was the one who told me about the spoon theory to help others understand what it was like to lack the energy to do the simplest of tasks. We got so that we could tell by each other's voice how many spoons the other had.

Karen got her new lungs 4 years, 5 months, and 2 days ago. Her husband called on the way to the waiting air ambulance that would take them to a far off city to have the transplant. That transplant gave her several years of a much more normal life although she still spent way more time in the hospital than most people do in a lifetime. A year ago she spent every significant holiday and celebration from Christmas to Easter to Mother's Day to Father's Day to her birthday in July, to her wedding anniversary in August, in the hospital. We joked this year when she made it past several of those events without being hospitalized. Even throughout those days in the hospital she would call and be more interested in what was going on with me than talking about her. She had the greatest contagious giggle and even after she'd broken vertebrae in her back from coughing too hard, she still ended up in giggles. She'd sound like this....giggle, ouch, giggle, ouch.

Sometimes when she would call from the hospital I wondered if this time would be the last time I talked with her. I've lost count of how many times I thought to myself, "this is it, she won't make it through this time." only for her to bounce back once again and surprise even the medical team.

She fought to make it through when her daughter got married last year and when her parents celebrated their 50th anniversary soon after. How she summoned up the energy for either is a miracle. Sometimes she was let out of the hospital just days before the event.

About a year ago she brought up the subject of her death. It was the first time we had that conversation. In the time since she alluded to knowing she wouldn't be here to celebrate her 50th birthday or her 25th wedding anniversary. No too long ago she worried outloud about her remaining siblings because she thought that for sure within 10 years neither she or her parents would be here. Both her parents are battling terminal illnesses of their own. She felt bad that she would be leaving her husband alone.

I last saw her about a month ago. We didn't see each other in person very much. But we talked on the phone pretty much every week up until about a year ago. Even though we didn't talk as often we still connected regularly. I knew if I didn't hear from her for a while it meant she was most likely in the hospital either here or in the big hospital far away where she had her transplant. Sometimes her husband would call and let me know where she was and sometimes I had to wait until she was strong enough to talk on the phone then she'd call and away we'd go again. She always called eventually. I thought this time she would, too.

When I started this blog I wrote a post that explained how I chose the blog's title. I had just been diagnosed after several years of doctors and tests galore. Back then I could choose between breathing and talking but couldn't do both at once on the worst of days. Sometimes Karen would hear me take a breath between words and point it out to me. She always encouraged me to listen to my body. She could hear things in my voice that weren't on my radar screen. It's good for me to remember that. Life has changed so much since then.

When we saw each other last month she was surprised by my weight loss and I was surprised by her frailness. It was as if she'd come full circle from post transplant back to a pre transplant state of health. Her home care nurse helped her to the couch and got her oxygen straightened out before leaving us to visit. We sat on the couch and watched her favourite TV shows together. It was a comforting distraction. It was easier when talking on the phone to avoid thinking about her death. Seeing her in person made me face that she wouldn't always be here. I haven't grasped that reality yet. I'm remembering her voice in my head as I type and hoping it will never fade.

Tonight I opened up the file that holds all her emails. I only was able to read a few of them before I closed the page. I had to stop when I read the following:

"You know, I loved turning 40. My husband had a surprise birthday party for me which was great and although I was diagnosed with PPH, I was thrilled to be 40 years old."

Karen turned 47 last month. She cherished every day she had since diagnosis.
Tonight I will go to sleep in the same bedroom as she once slept. Ironically I live in the same trailer that she lived in over 15 years ago.

I stood at the kitchen sink tonight, the one that she'd once stood at too and let my tears fall into the dish water. I know goodbye isn't forever but tonight it feels so final. Breathe easy Karen, breathe easy.

Acting Up

Time soon for bed.
It's been a good day.
A full blown pajama one.

My spoon supply feels refueled tonight.
I'm glad I listened to my body and took it easy today.

Blogger is acting up tonight.
Let's see if it lets me post.

Ain't No Sunshine

Typing this is the limit
to my spoons.
Lifting my arms to wash my hair right now
seems like too much of an effort.

Hopefully as the day goes on
my energy will increase.
Sometimes it works like that.
I just can't predict when.

The energizer bunny is snoring gently at my feet.
She snored between us all night in bed.
If you'd asked me a year ago
if I'd ever let a dog sleep in my bed
My face would have said it all.

Last night an inch of rain
fell on our hay crop which is
lying in swaths in the field.
The rain was sorely needed in general.
Just not on our hay.

I was talking to only daughter as it rained.
Several times the phone crackled as lightning struck.
I remembered hearing a tale from when I was young
of someone killed while talking on the phone
during a thunderstorm.
After one loud crack that nearly disconnected
the phone line between us
we agreed to end our conversation.

Seven weeks from today
my parents and sisters
will be at my house for supper.
In the 28 years since I left home
it will be a first to have
them here together.
Only the fourth time my parents
have ever been to my home.

Oldest son is getting married in
seven weeks less a day.
I watched as his bride to be
tried on her wedding gown last week.
She looked beautiful.

Despite my lack of energy today
it still holds the promise of being a good day.

Minutae

The energizer bunny is sleeping at my feet. She spent the 5 minutes before that barking at an imaginary enemy down the hallway. I had to open a bedroom door so she could tentatively peek and reassure herself that no enemy lived within. Youngest son's room does look like a warzone at times though. Well, then again, so does mine.

Yesterday my in-laws came over to work in our garden. They have just a little raised garden bed now and were happy when we offered to plant potatoes here for them. Yesterday they came to hill them and do a bit of weeding, something my mother-in-law especially enjoys. She with leukemia and he with congestive heart failure and there they were each with a hoe, enjoying a sunny afternoon in the garden. I picked weeds by hand, putting them in a 5 gallon bucket to throw over the fence. 15 gallons later the garden was weeded. I even found the Lavatera which had germinated despite the competition from the rag weed.

All that weeding means I have less spoons today than normal. Bending over to weed still takes a lot out of me. More than I realized. I have nearly 20% of my blood volume bypassing picking up oxygen as it does the loop and when I bend over my lungs protest and beg for air. Well, they don't beg for it until after I go horizontal so overnight they went into overdrive and are protesting as I type. Breathing deep hurts and makes me cough. I had hope to resume walking and yoga today but I think a day on the couch is going to be the wisest choice I can make.

Dearest one has a final exam tonight. He could use some prayer. Going to school plus teaching full time has left him feeling exhausted. The worst/best of it is that this will continue to be his reality as he was awarded a tenure track position this spring. That means he has 3 years to complete his Master's degree and then he'll receive tenure. On top of all that he is working hard on inner issues which he says is more exhausting than school and work combined. He is one courageous man. He's in a place where it's too late to stop the momentum of inner work/growth yet has days when the new awareness is so painful he'd like to erase the forward movement he's made if only to take a momentary breather. He's goes on a work related trip later this week and gets to see only daughter as a bonus.

Energizer bunny is now snoring gently at my feet. It's time to join her. Not in sleeping on the floor, mind you, but in sleeping. It's only 8:30 am. My body is screaming at me to pay attention and get some rest. I am grateful that spoonless posts are not the norm anymore, although they have been in the picture more often of late. This too shall pass.

More Birthday, Less Belly

One of the most frequent hits I get on this blog is for the term belly button birthday, which I wrote about nearly a year ago and reread today. It's a term used to differentiate between your birth day and the day you celebrate your sobriety.

This will be a full week. For those of you who are so inclined, my spiritual director, Fr. Charlie, is having surgery in a few days and prayers would be appreciated. He often talks about the ripple effects of transformation in a person's life. I am a beneficiary of the ripples of his own transformation. And I think you may be, too. He has held out a beacon of hope for me when I've been unable to see any way out of the miry clay. This past week he kept asking me the same hard question half a dozen times during our session. It took that many tries before I was willing to consider the question and answer. Fr. Charlie's seen every avoidance tactic I employ and is not fizzed by them in the least. God bless him.

The radio documentary airs this week. That same day I will see my therapist, say goodbye to a friend who was recently diagnosed with cancer and has only a few weeks to live, and visit another friend who has been on the brink of death so many times that I've pulled back from the friendship because I can't handle that we're not going to grow old together. Those are more words than any sentence should contain. Oh well. Trying to wrap my head around death continues to befuddle me.

My birthday is the following day.

This year I have more birthday, less belly. Typing that makes me grin because my brain goes into overdrive with too much information. Sorry. Sixty pounds less weight means less belly. The same wonderful rising bread dough punched down flesh that comes after babies and more babies and weight gains and losses and the ageing process that makes it all go south eventually. When you live as far north as I do going south has a nice ring to it. Okay, okay, I'm done being corny. Considering that I was born 12 weeks too early in a time when survival was not expected, I'm grateful for every year I age. No, I don't always embrace that pimples, wrinkles and grey hair can coexist. But in the whole scheme of things, every day is a bonus. I get to live this day.

Friday night I will be on a team for Relay For Life. For 12 hours through the night, one of our 10 member team will be walking around the track with 140+ other teams. The event is held at night to remind us that cancer never sleeps. You know, with my chronic health issues, what a gift it is that I can take part in something like this. Yes, I'll be spoonless for a while afterwards, but I will bounce back. I will bounce back. Well, with my extra skin and less belly, I'll bounce a little further. Everyone should be so lucky. And they aren't. And I'm really aware of that today.

Day Is Done

It's time for a soak
in the shower and then bedtime.
I love my bed.
I love showers, too.
It's been a full day.
Mowing lawns.
Planting flowers.
A walk with dearest one.
Cleaning, dusting, vacuuming.
Chicken tacos for supper.
Ice cream for dessert.
Tomorrow might be a day
with no spoons
but today was worth it.

In Short Supply

Spoonless in Canada.
Prayers appreciated.

Me Jane

Earlier this morning I thought to myself, it would take less energy to lay my head on the key board and cry than to lift my arms and type. The only catch is that tears don't magically seep into the keys and translate on to the screen. I've slowly been losing my grip on spoon filled days and I'm finding that hard to admit, let alone accept. Well, that's an understatement. My older sister tells me I used to throw quite the temper tantrums as a child. I'm not sure I've completely outgrown them. I'd have one now except it would use up precious energy - all those flailing arms and such - and the one thing I can do is choose my attitude regardless of my circumstances.

I haven't been a list maker of any kind for years and I don't miss the relentless measuring stick I made of those lists. So when I found myself journalling a list of 50 resolutions/goals for 2008 I knew I was headed for trouble. The day after my list making journal entry I wrote, "give your head a shake, girl!" With that I gave myself permission to disregard the list. Sure, there are things on there that I'd like to accomplish this year and the list is mostly made up of minor things like buy a pair of red shoes. But making the list was in itself a bell ringing wake up call. I couldn't shake a gut instinct that told me I must be feeling out of control in some areas of my life if that's how I was spending my spare time. Making unreasonable lists, as if they are the sanest option in the world, is my attempt at trying to control as much as I can outside myself in order to be at peace within.

Which is crazy making.

One thing that did make it on the list was a goal to go swimming twice a month. This past Saturday I did just that. And in my all or nothing thinking I had to make it worth my while, after all I'd paid 5 bucks to get in, and making it worth my while consisted of trying to dodge 15 teenagers while swimming laps across the pool. I way over did it physically. Occasionally I noticed that the bulk of the people around me were using pool time to socialize and that there was only one other person trying to swim laps.

When I was in treatment I told myself that the next time I was at the pool I was going to jump off the rope swing. It seems like such a little kid thing to do and I haven't done enough of that in my lifetime. I watched who was going off the swing (all Tarzan like) and not one middle aged woman was in sight. I weighed my options and decided that I really wanted someone important to me to witness (and take a picture of) my little kid moment so I'm saving that for next time.

I ended my time at the pool by spending a few minutes in the hot tub. As I sat down I recognized two people from recovery meetings and although I'd never talked to either of them before, I made my way over and introduced myself. While we were talking one of them spoke to a group of people who were from the treatment centre that I went to last summer. On my way out of the building the clients from that centre were waiting for the druggie bus as we called it, to take them back. I told them I'd gotten out of treatment in August. One of them asked me how it had been. I told him treatment had been life changing. He said he hoped it would be like that for him. I told him he would get out of it what he put into it. If he was willing to deal with his shit he'd have a better chance of making it outside treatment. He told me I was an inspiration and with that we went our separate ways.

By the time I got to the grocery store my chest was hurting from over doing it at the pool. Sunday morning I woke up with my heart racing over 100 and it did that for hours. Monday I had counseling at the childhood sexual abuse centre. Yesterday I got to a mid week AA meeting which helped me get my bearings. After that I had a session with my after treatment counselor where she helped me connect the dots as to some possible reasons for my lack of energy and how that was compelling me to grasp at control in other ways. It is so good to get another perspective. Left to my own devices I'd still be blaming myself for my current lack of spoons and beating myself up for not being able to bounce back at will.

I was able to trace my growing lack of energy back to when I started the counseling to deal with the trauma of childhood sexual abuse. Those have been exhausting, difficult-to-face sessions. So my counselor yesterday was able to stand back from the the situation and tell me that my body reacting with less energy was a clue that I was truly dealing with the baggage. That I was doing the hard work. That what looked like a negative was really more growth. She asked if the lack of energy continues as I journey, can I trust that I'm right where I need to be?

I looked at her and let the tears spill over.

Through my tears I told her I'd do just about anything not to go back to gauging my steps based on my spoon supply. Having no guarantee if tomorrow I'll wake up just as exhausted as I was this morning, or whether I'll feel normal makes me want to bang my head against the wall. I'm not back to square one health wise but I'm scared that's where I'm headed. I really thought my health issues were in the past.

Damn.
I'm not God and I don't control it all.
And while I hate, hate, hate it, I can't experience serenity unless I accept that this is my reality for today. (my mindset has been: how dare you fucking betray me, body of mine, after all the hard work I'm doing.)
Yet my family doctor had told me that I might experience more physical symptoms when I started the counseling. The sexual abuse centre had also warned me that increased physical symptoms were a normal part of the process.

I was so sure I'd be exempt.
I don't know if it's sad or funny but picture a group of addicts together, who've forgotten they're human, and you'll find them tapping their chest (in unison, mind you) while emphasizing how they alone are special and not. like. other. people.

And since I'm finding out I'm more like those who've gone before me than not, here I am today. Attempting to deal with my shit. Praying to be willing to surrender it. Praying for the courage to trust the process. Shredding my application for God's job. And very grateful to recognize that crazy making lists and grasping for control are sick options for me when trying to deal with life on life's terms.

Will I trust or won't I? The choice is mine.

Earnie Larsen writes in Destination Joy

"Let go of the rope. Every day, every hour, one day at a time, stage by stage and step by step - let go of the rope."

When I do, that's one picture that's going to get framed.

Surrendering to Reality

Good self care is my goal today. My body is weary and a nap is calling. I am grateful for the ability to surrender to reality today. Tomorrow I start meetings for a women's weekend that I am often involved with. We meet weekly for 3 weekends and then take a break before the actual women's weekend. I'll be giving a talk about putting one's faith into action. Writing and giving talks is life giving for me. This time around I'm bringing a bar stool (how appropriate) to sit on while I give my talk instead of standing for 35 minutes. I'm getting smarter. Spoons don't define my days like they used to, and for that I'm grateful, yet I still have limitations. Today I'm trying to honour that.

Coherency

I can't seem to put together a coherent post.
I'm not without things to write about.
But, is it worth the energy to write?
My sister tells me my best posts
look flawless.
I tell her it's a 2 to 3 hour
time investment
to make it look that way.
If it ever does.

Here is the short version:

Dearest one resigned from his answer to prayer job.
Too much stress.
Too many politics.
Too little time.
He is back working night shifts and
hating every minute
of the long drive home afterwards.
Especially after he nearly tangled with a semi
one morning last week driving home.
He's looking at his options.
I hate change.
Well, change I'm not in control of.
It gets complicated because I often
think I'm in control of all change.


Youngest son broke up with his girlfriend
almost a month ago.
I feel relieved.

I believe that those who
push our buttons
are our greatest teachers.
His girlfriend was one such person to me.
I don't think I learned
what I might have.
But I did learn some.


Fr. Charlie is being transferred
to another parish
many hours away.
I was blissfully unaware, and
absent from church
when this was announced
to our small church community.
Everyone in church ended up in tears,
including Fr. Charlie.
I don't do tears very well in public.
Let me rephrase that.
I don't do tears very well in front of anyone.

The day I last had injections
I also had freezing at the dentist.
It was too much of a good thing.
I ended up in ER the following day.
The pain was wretched.
All is well.
But it didn't feel that way at the time.

Dearest one threatened to call the ambulance.
The thought of the EMS people
trying to make their way
to my bedroom,
through the mess my house is in,
motivated me last week to use all my spoons and then some
cleaning it up.
Well, the parts you can see.
I'm not talking about the closet, or bedroom,
the office
or porch
or anything like that.
Living room, kitchen, dining room only.
It's very nice to see clean spaces again.
Ha.
I just remembered
the parts EMS would have to navigate
are more messy than ever now.
I mean, where do you think all the
I-don't-know-what-to-do-with-it stuff
went?

My intake assessment interview
for rehab
happens this week.
I'm more scared than anything
although I do have moments
of overwhelming gratitude
But they pass.

I suspect that

*hating change I'm not in control of;
*believing those who push our buttons
are our greatest teachers;
*not doing tears well in front of anyone;
*experiencing wretched pain
and
*cleaning up the mess no one sees

will all be addressed
when I'm in rehab.

Lucky me.

Throwing My Back Out

"I used to have eyes in the back of my head, she said, but I kept throwing my back out & my chiropractor made me stop." ~ via

Every morning I get an email from Story People and this one made me laugh out loud. I need to laugh more. In the chronic pain/fatigue group I'm in, the facilitator told us that a good belly laugh has positive effects on our immune system for 24 hours. My immune system can use all the help it can get right now. Seven years ago I had Bell's Palsy and it never completely went away. Eventually I came to see it as my body's alarm system. When the left side of my face feels like I've been to the dentist, except the freezing hasn't come out yet, my body is trying to tell me something. Like attend to better self care. Or no outside activities. Or time for a good belly laugh.

It's been a difficult week. Basically a no spoons week. I tried to listen to my body and that meant sleeping a lot and next to no activity. Only daughter was home for a visit and that was good. We both wished she had had one more day here before she had to drive back home. That was a great improvement over her time here during Christmas holidays.

Yesterday I went, dragging my feet all the way, to my AA meeting. The left side of my face felt like cement. On the way to town I told myself that I really didn't need to go to the meeting. Then I started making deals with myself. If I did go I would pass if called on to speak, unless there were less than 5 people there. Around in my head went one deal after another. Eventually I recognized that the deals I were making with myself sounded no different than the deals one makes when they are still drinking. I asked myself why I was thinking like that. Tears threatened to overflow when I realized I was feeling vulnerable. So vulnerable. The kind of vulnerable where tears would turn to sobbing if I opened my mouth to speak. Tears would spill over if someone had a kind word. What I really wanted to do was isolate myself until I felt more in control. I find it really hard not to judge myself when I get like that. And I assume every other living soul, especially other alkies, are going to judge me too. I wondered if I was simply trying too hard, if that was possible in recovery and if what I needed to do was let go and let God instead. When I admitted to myself that I would rather isolate than go to a meeting I knew I had to get my butt in a chair at the meeting. Isolation was what I excelled at when I nearly lost my sobriety last year. Going to the meeting was an act of my will. It didn't really matter how I was feeling at that point.

There were more than 5 people at my home group meeting. Three times that amount. And most of them were people I'd never seen before. I told myself that every single one was an angel sent by God to remind me that I wasn't alone and that I couldn't walk this journey alone. I felt like God was having a belly laugh of His own while grabbing me by the shoulders and giving them a squeeze of reassurance.

I had reconciled by the time I got there that if I was called on to speak I was going to share how vulnerable I felt and the whole head trip I took on the way to town. But I wasn't asked and instead got to listen to people share of their strength, hope and experience. I was reminded to use my energy to work on real problems, not the imaginary ones in my head. That was the nugget of truth I took with me as I left the meeting.

I did see my chiropractor not too long ago. And while he didn't tell me to stop using the eyes in the back of my head, he did tell me I was a mess and that I needed to come back for more adjustments.

TGIF

It's been a long week, full of good, though spoon zapping activities. I need to get my supply up again because only daughter is coming home next week for a few days. We haven't seen each other since Christmas. And she won't be home after this bit until next Christmas. I think I'm starting to accept that this is the way life works with adult children. It still feels odd though.

Youngest son is doing well. To not have underlying tension between us is a gift. It was easier and less stressful with an empty nest, though. On the positive side (feels like a negative some moments) I am being stretched and challenged to really live my program of recovery. My big book is on my bedside table now and I read it regularly. I am looking forward to tomorrow's AA birthday meeting with one of my favourite people in recovery celebrating 20 years of sobriety.

Oldest son had his 21st birthday this week. We're hoping to see him this weekend. I don't know if I mentioned that he got engaged on St. Patrick's Day but if I didn't, just know I'm pretty pleased. I think about all those nights of tucking him in as a little boy and praying for his future wife. Some (silent)prayers were "omg, give her plenty of help to accept his pack rat ways." Others were prayers for a young woman with God on the radar screen. And this young woman has that. I don't know how any marriage can survive, especially these days, without God at the center of it. Actually I like her so much that the last time they came to visit I wanted oldest son to leave her here because we weren't done visiting yet. And only daughter finally gets a sister. That makes me teary.

Dearest one. The new job is a great opportunity for growth. He's capable and doing well at the job. There are days though when he'd like to hide under a rock instead. I don't know if it's all the stuff with youngest son or the court ruling or the stresses of the new job but he often looks haggard these days. Lots to sort out there.

And me? I came to the difficult conclusion this past while that I need to talk to my doctor about pain management. I don't know if it's the result of going to the chronic pain/fatigue group, which has taught me to be much more aware of my body, or the stress of having youngest son move back home or what, but I'm now aware that I wake up at night to roll over because I'm in pain and that same pain is becoming increasingly difficult to ignore during the day as well. I don't know what managing that is going to look like but I've finally accepted that doing so is a sign of strength, not weakness.

Oh, yes - we survived 6 solid months of snow winter and over seven feet of snow to finally have spring in the air. I picked crocuses the other day so that makes it official! Spring is full of hope.

Of Trysts, Traps and Spoons

If I get any more spoonless today I won't be able to walk to the bathroom. Seeing how it's been 17 years since I last changed a diaper, today is not going to be the start of changing my own. Which is a roundabout way of saying it's a couch day today. Gotta save those spoons for the trek to the bathroom. I feel like a limp rag doll.

Yesterday was a full day in town. We ended up skipping our evening plans and coming straight home after buying groceries. I was in bed by 9 pm. I was hoping that sometime during the night the rodent who has taken over my kitchen would make its way into the live catch mouse trap I bought yesterday. With an empty trap this morning, I look at my counters and wonder what the heck could be more enticing than the smell of peanut butter? Ah, yes, the little bugger opted for the bleach scrubbed counter tops instead. Must be on a diet, poor thing. Argh!

I had a check up with the doctor yesterday and was oh, so proud of telling him I'd managed to walk a mile per day for three days in a row this week. Considering that three years ago I could only manage 75 seconds on the treadmill before my heart rate was over the top, walking a mile is a big, big deal. In retrospect maybe trying for a mile three days a week instead of three days in a row might be a better option. Trying to sort out the ebb and flow of my spoonsupply and mulling over whether 3 days in a row followed by a full day in town is worth a spoonless day today is an ongoing battle. Walking a mile does feel like a huge gift.

A very dear friend of mine is in the hospital. She's been there more than not since last Spring. It's been almost three years since she had a double lung transplant. She has been there for me every step of the way as I went from doctor to doctor trying to get answers to my health issues. I found her through the internet even though we lived about 10 miles apart back then. It turned out that she had the same cardiologist as me - the one who told me I was simply hormonal. She had doctors telling her to go home and get a life, insinuating that she was a hypochondriac. That took a toll on her and it's something we understand about one another - how that attitude on the part of doctors can make a person mistrust their instincts ever after. Both of us instinctively knew something wasn't right in our bodies while doctors dismissed us. In the end we both were blessed by the same doctor who listened and made things happen. By that time she was just about ready for the lung transplant. Her name is Karen if you would be so kind as to lift her up in prayer. I'm going to visit her tomorrow. She's so tired of fighting the fight to live. I can hear it in her voice. It scares me because she is such a fighter. She has a giggle that is contagious. And above all else she is full of gratitude for the journey. She knows every day is a gift.

Well, it's almost time for my regular dose of Family Feud. The funniest answer I've heard lately on that show was when asked to name a road sign that described their love life one man answered, slippery when wet. His wife turned brick red.
I'm still chuckling over that one.
Let's hope the mice don't have a tryst of their own before they give in to their cravings and enjoy the peanut butter in the trap.

The Palm Of Our Skull

"It's at night, when perhaps we should be dreaming, that the mind is most clear, that we are most able to hold all our life in the palm of our skull. I don't know if anyone has ever pointed out that great attraction of insomnia before, but it is so; the night seems to release a little more of our vast backward inheritance of instincts and feelings; as with the dawn, a little honey is allowed to ooze between the lips of the sandwich, a little of the stuff of dreams to drip into the waking mind."~Brian W. Aldiss

It's the middle of the night and I'm holding some of my life in the palm of my skull. I was trying to keep track of the little bits of mental notes I was making when I decided to get up and write them all down so I could go back to bed and get some sleep. It would be of no surprise to dearest one to wake up and find me writing. He knows me.

I finally got to an AA meeting yesterday. What a relief to be in a room of people where I don't have to explain myself. I simply get to be. Accepting where I am on the journey and telling that truth without judging myself, is probably the hardest thing I face on a daily basis. An AA meeting has become one of few places where I don't struggle to be someone else or somewhere else on my journey. What a gift.

It was a good meeting. Before I got there I really felt the need to share. When I walked in the room, the person who normally chairs the meeting asked me if I wanted to chair it. I took a few moments to think that over and decided maybe his need to share was greater than mine and accepted. I heard good, good stuff around the table. I love that I benefit from someone else sharing their experience, strength and hope. I've had more light bulb moments at a meeting than for all the times someone has been purposely trying to flick the switch on for me. I need to remember to stop trying to do that to others.

I've never had a bona fide sponsor on my recovery journey. In the beginning, the woman who introduced me to Al Anon and then AA was a rehab counselor. She gladly took me to meetings and we became friends. Since being back in the program the last 6 months, I've increasingly seen the need for a sponsor and have become willing to surrender my habit of trying to fly solo. After the meeting yesterday I approached a woman about becoming my sponsor. Every time she has shared in a meeting I have appreciated her words of wisdom. She has a beautiful, humble spirit and she tells it to you straight. I need that. It's not easy for me to trust women, especially other alcoholics. I'm not sure why. Reaching out for help is such a sign of health for me. She is willing to consider it and I will call her later today. I realized through the Christmas holidays that had I had a sponsor I would have dealt with my resentments sooner rather than later. I could have heard myself simply from sharing outloud with someone else, someone who gets it, and known I needed to take action.

I never went through rehab or 90 meetings in 90 days. When I sobered up I had a newborn, a toddler and a 4 year old. Rehab seemed too inconvenient. I can laugh at the absurdity of that thinking now. I had been sober a year and active in Al-Anon before I walked through the doors of an AA meeting. Dearest one and I have been discussing whether it would be possible for me to go through rehab now. Even though I haven't had a drink in almost 19 years I feel like I've only been working the program for these past six months.

Sometimes when someone is pissing me off I think to myself, "You're messing with my serenity." It's a gentle, humourous way to remind myself that my serenity is up to me and no one can mess with it unless I give them permission. There are people at my meetings who have serenity on a daily basis. I want that. I want it more than I want to be right. I'm willing to do what it takes to get it. God help me.

Last night while hashing out my day with dearest one he interrupted me to say, "I love you." He had this tender hearted look on his face and I replied, "You do?" I proceeded to pepper him with questions about that until he laughed and teased me that I was giving him the grand inquisition because he told me he loved me. I laughed too and decided to accept his words without having to have them clarified. I know he was seeing something in me that I couldn't see had I gone and looked in the mirror. Accepting love heals.

This past week I took a step towards better social health. I've known for some time that I need to be among people more than I am in any given week. It's so easy for me to be a hermit, to stay within my comfort zone. Several months ago I approached the head of the local historical society about volunteering my writing and research skills. I told her I couldn't commit to anything until after the New Year and this past week she called to see if I was ready to start. Despite the piles of papers I make on any flat surface in my own home, I do love to organize and file things away, which is one of the jobs this woman needs done. In the next few weeks I will also learn the practical side of museum collections and how to register and catalogue items. When time allows I will write about items already on display and at some point write a local history booklet for elementary students. Every week I will meet for a few hours with other community people and use my gifts for the benefit of the whole. It feels like step in the right direction.

This coming week I will start biofeedback training. Back in November, when I had my annual checkup, my doctor and I discussed options for dealing with my increasing pain levels. If I sit too long it becomes painful to walk. If someone touches me pretty well anywhere on my body, it hurts. My joints are getting to be an issue. Last week at a family gathering, dearest one was holding one of our great nephews when he teasingly, gently touched my shoulder joint with this little guy's foot. By the third touch I was in pain. Anywhere I scratch on my body becomes painful to the touch immediately. I don't know anything about biofeedback training but am hoping it will help me cope with the pain. I'm also on the waiting list for a local chronic pain group too, which will also teach me coping techniques. It's been several weeks since I've had enough spoons to get me through to the end of a day so I'm hoping all this will help me manage those better. Trying to balance having a life and having spoons is an ongoing challenge.

Dearest one just got up and looked at me kind of puzzled a few moments ago. Even though it's 3:30 AM, the kettle is on and we're going to have a cup of tea. Then it's time to put this waking mind back to sleep.

I Just Ate Your Last Coke...

..that was the sentence I was composing in my head before I sat down to confess such in an email to night-shift-working dearest one tonight. It took me several run throughs to realize I must be really tired to think I could eat a can of Coke.

Thank you for all your well wishes and prayers. The retreat was wonderful. I haven't laughed so much in a long time. Sometimes when I go for a long time without laughing and then eventually do, my laughter rings hollow. I feel startled at the sound of my own laugh....like it doesn't belong to me but someone I don't even know. This weekend my laughter felt warm and life giving and fluid. Best of all it was spontaneous and genuine.

My talk was well received although that's neither here nor there. I like talking and they let me, so we're both happy. Last week dearest one was in the middle of writing a letter for me to read during my weekend, when I walked into the livingroom and started chattering his ear off, oblivious to what he was doing. Eventually he looked at me and told me his thought train had 'derailed' and he had been on a roll before I started talking. We laughed and I thought he was pretty sweet not to just delete the whole thing. He told me he now knew what I felt like when I was writing a blog post and he started talking to me and I lost my own train of thought.

Written words don't come easily to him so he was disappointed to be 'derailed' in the midst of writing me an encouraging note. However he made me laugh and cry this weekend when I read that particular note. Here is what he said:

"Hi Heart,

Hope is such an easy word to say; I hope this...I hope that...I hope you...

Your pen name fits you so well because as Dr. M. said, "Her determination will do her a lot of good." That is the same determination that has kept you going for thus far all the way since '62 and will likely be the substance that keeps you plugging away through the next however many decades of this life.

For me that has been somewhat of a two edged sword at times. There are the "I can do this or I'll be damned" times when I would have sooner done it for you; to me it would have been easier than watching you struggle with the fallout later [he's talking of me using up spoons unnecessarily]. For you it seems to be that same 'determination' that your grandma saw.

Hope is your favourite word in the English language, perhaps which is partially why you are so well able to....(Here's where my train derailed) ...give others a vision of what it looks like for themselves.

I have many hopes for you, for me, for us....the greatest of which I know will be realized when we are snuggled in the arms of Christ, hearing his "Well done."

Forever hope,
dearest one

Somehow I know he will forgive me for eating the last can of his coke.

Wading Through, Doing The Work

Wow. I could write a separate post on each one of you and how you continue to impact my life. Some of you I know only through the internet - from what I've read on your blogs and through personal emails, others I also talk to on the phone and there are several commenters who I know in my everyday, face to face life.

A few years ago when we were a family on welfare and using the food bank I learned that whenever someone takes the time to pay attention to me, be it in conversation, prayer or by meeting a physical, emotional, or social need, they sacrifice to do so because they could've been spending that time/money doing something else. So thank you for taking the time to not only read, but comment. Jean Vanier in his book, From Brokenness to Community says the cry of the human heart is this: "Am I important to you? Do I have any value?" Thank you for hearing my cry.

I sat in my prayer room this morning welcoming the solitude and silence. I felt embraced and hopeful. I was reminded that my job is to show up. The way God works is a mystery and today I could accept that again. I didn't need to have it all figured out. I get tripped up so easily thinking the finish line is the point. Like my friend Peter says, "one foot in front of another." Often in the quest to put that one foot in front of the other, I trip and fall, then feel ashamed that I haven't managed to keep standing. Reading these words were soothing to me this weekend:

"Though fairy tales end after ten pages, our lives do not. We are multivolume sets. In our lives, even though one episode amounts to a crash and burn, there is always another episode awaiting us, and then another. There are always more opportunities to get it right, to fashion our lives in the ways we deserve to have them. Don't waste your time hating a failure. Failure is a greater teacher than success. Listen, learn, go on."(emphasis added)

The author also writes,

"It is ...... fatuous to think that once we solve an issue it stays solved, that once we learn, we always remain conscious ever after. No, life is a great body that grows and diminishes in different areas, at different rates. When we are like a body, doing the work of new growth, wading through shit, just breathing or resting, we are very alive,.....If we could realize that the work is to keep doing the work, we would be much more....peaceful."

Part of my struggle lately is that I am still wading through this relatively new empty-nest-season in my life. I home schooled my kids for 15 years and went on quite the detours in my spiritual life during that time. I joke to only daughter that it's a wonder her and her siblings don't have spiritual whiplash. Some of those detours celebrated repression in the name of being a good wife and mother. I lost a part of me in it all. I don't mean that as a slam against homeschooling or being a stay at home mother. There were many positives to both. Any person, no matter how they spend their days, can repress that which is life giving, can drown out the voice of their own soul, in order to get the (fleeting) applause of the (invisible) crowd.

And so here I am. It feels both scary and exhilarating. The rest of my life is before me and with far less responsibility, I find myself trying to navigate a freedom I haven't had since my college days. Had I known I would develop a chronic illness before this season of my life began I might've made different choices earlier. But none of us have the wisdom of hindsight until it is just that, hindsight. I've come to the conclusion that repressing what would have breathed life into my soul has quite possibly contributed to my illness. I don't think it is a coincidence that being short of breath was one of the first symptoms. If I hadn't had the genetics that made this illness possible, I think my body would've tried to get my attention some other way. It has my attention now. Some people would read that and think I am being too hard on myself. I don't feel any guilt or shame coming to the conclusion I have come to. I feel thankful that my body would do what it had to, to get my attention. It is a gift. I am forced to pay attention to those things I could've kept silenced by busyness and noise. It doesn't mean I don't mourn what used to be because I do. So does my dearest one.

Last week he was in a(n)(unusual for him) melancholy place, saying aloud several times that he felt like someone died. We both thought his mood was about his deceased brother, who's birthday was that day. Eventually he realized the person he was mourning was me. Us. We had quite different dreams for this season of our lives. They all involved doing things that took physical ability. Dearest one walks 108 steps up from locker room to hospital floor daily. He says not one day goes by that he doesn't think of me as he walks and how I am unable to face such a challenge. Me, who used to thrill at the challenge of walking faster, pushing myself a little harder every time I exercised. We both know if I attempted those 108 steps I would be going down on a stretcher. This makes dearest one feel not only sad but angry, too.

Our dreams of walking the beach, travelling overseas, getting in the car and driving wherever our hearts desire are no longer possible. Our lives together revolve around my spoon supply. As we talked about this last week I realized anew that when one person has a chronic illness it impacts everyone around them. Dearest one has to pace himself to my pace. Part of me laughs at the irony as I type that. There were so many years when I went for a walk and was absolutely frustrated that dearest one wanted a leisurely walk and I wanted to acccomplish something instead - get my heart rate up and have an aerobic work out. These days moving from doorstep to car can get my heart rate up into that level. I dearly miss the challenge of exercising and increasing my stamina, being fit instead of fat.

Dearest one says it makes him feel like he is a single person because for him to realize his dreams of travel, etc. it will have to be alone. For even if we went together, the exploring and all that we find exciting about doing it, is impossible for me. Heck, we can't even go for a long quad ride together on our farm because if we get stranded I will be unable to walk my way out of the bush. Dearest one is seeing his dreams vanishing because what we wanted to do together holds no appeal to do solo. My physical limitations often make him feel like he is married to someone 40 years his senior.

So while we are in yet another cycle of mourning, we are also looking to the future and how to make the most of it. Validating the feelings yet not getting stuck in them. I refuse to let this illness define who I am. How exactly to navigate the reality of it is something we continually revisit. The wading through, doing the work continues. I do feel like I have my bearings again spiritually. I feel like I am able to face those things I have repressed and see what they have to teach me. I am hopeful in it all that I will befriend my feelings instead of being scared of them. I am hopeful that my mind and body will become more in sync instead of enemies.

Last week one day dearest one met the doctor who pushed the specialists until they came up with a diagnosis for me. She asked him how I was and when he told her that he thought I was worse and I thought I was better she told him that his assessment was most likely right but that my determination would get me far in life. When I was a newborn, premature infant in an incubator, my grandma came to see me. She went home and wrote in her diary that I had this look of fierce determination on my face. By the grace of God, it's still there.