Tag Archives: fibromyalgia

Recovery

I got back from Interweave Knitting Lab on Monday night (late flight) and jumped right into family stuff (parent teacher conferences this week, debate club, theater stuff) and also into business stuff (full day seminar on starting a small biz in MN on Thursday offered by St. Paul Score) and feel as though I wasn’t able to catch my breath until Saturday.

I think, after almost 4 years of officially having Fibromyalgia, I’m finally getting a good grip on the strategies for holding energy. The spoons analogy helps me explain this to folks who haven’t suffered this kind of ongoing exhaustion/pain issue.

Even more helpful, at least for a tech head like me, is the iPad battery theory.

With iOS7, Apple’s made a lot of changes in the operating system of the iPad. One aspect I read about often is the low battery problem – the fact that iOS7 tends to run down the batter faster than previous operating systems.

I feel one with my iPad.

My battery runs down SO quickly now. Things I used to not worry about at all are now constantly on my mind. Can I get through this day? Can I lift this suitcase into the overhead compartment? Can I walk all the way down the corridor in this hotel/airport/convention center? Is my exhaustion making me limp/shake/act snappish?

The only way to fight this is to NOT fight it. Fighting takes strength and energy, so instead of fighting I find strategies to make peace with my energy levels, do all I can to raise them, and work hard to NOT waste energy doing all that fun stuff I used to take for granted.

No more going out for drinks with friends in the evening while I teach.

No more days of NOT exercising – I must do something EVERY day if I want to be able to move the next day!

No more eating poorly – I must have good protein, vegs, and not too much sugar because these things affect my energy levels tremendously.

No more ‘doing it all myself’ – I have to ask friends, students, family members for help. Recently at Interweave Knitting Lab my friend Adria stayed by my side to get me to and from each class, and her help was immeasurable. I realized on Sunday in my last class when I actually felt ENERGETIC instead of EXHAUSTED that one huge reason for that difference was Adria’s help – she’s wonderful.

If you don’t hear from me for a few days, generally the reason is that I’m resting a bit, and that I have to put my energy into something other than my blog for the day.

I really miss writing in my blog almost every day, I used to find myself filing away many things that happened to me during the day as ‘blog fodder’ and found great joy and comfort in the comments of my readers.  But the truth is, I just can’t write as often as I used to – which is cool – and I’m grateful to my readers for their kindness and understanding about this change!

Coming up is a big week – I have some great stuff to do, lots of physical work, a few huge submissions to get through and some family stuff (all good) to deal with. I am SO fortunate that I have a good friend/partner in crime to help me with a lot of the business stuff (thank you Kathleen!) and even MORE fortunate that I have an amazing husband and great kids who also help.

So look for some great news this week, a really TERRIFIC book giveaway, and – if all goes well – at least three nice blog posts!

Now go out and enjoy this great November Sunday! Thank a veteran (and their family!) and spend some time reflecting on how much better this nation could treat our warriors. And take some time to rest up – it’s a big week ahead!

And me? I need to get my bike ONTO the trainer so I can ride indoors every day until Spring comes. Gerry very kindly wrestled it downstairs to the basement for me (where my office is) – now it’s up to ME to get it on the trainer and RIDE it!

I Like To Ride My Bicycle

Giving Joy

I made a documentary! It’s on the subject of Care Giving, and it’s called Giving Joy.

This summer I was accepted into a program at our local public access TV network (SPNN) called DocU, where we spent 15 weeks learning how to plan, shoot, edit and craft a short, 10 minute documentary.

It’s in a competition right now, and if you’d care to vote for it, I’d be thrilled!

I loved this process. It was exhilarating and exciting, and I feel like I’ve had a door opened into a whole new world.

No surprise, my favorite part was the planning and the editing. The actual shooting was fun, but physically a bit rough some days.

Which brings me to a different subject.

I know I’ve been low profile this Summer. I feel that I’m hermitizing myself — trying not to be in public more than I need to — and of course, that’s not healthy.

That’s one reason the DocU program was so great this Summer,
it was a place I needed to be once a week to see other people
(and it was a reason to get out into the world for shooting).

I’d hesitated to write this, but I feel that I’m slowly disappearing in some ways, and I wanted to explain that it’s not permanent. I just need to figure out how to get on top of the continuing pain from my Fibromyalgia, which wreaks havoc both physically and emotionally.

I felt like a fraud some days when making my documentary, because my health’s been so iffy this Summer that there were days that Gerry was the caregiver, and I was the patient!  I don’t know exactly what is changing, but I do know that my pain levels are increasing and I don’t feel able to control them with biking alone, as I have for 3 years.

I’ve been experimenting with different ride lengths, riding at different times of day, in different temperatures, and it seems that riding between 10-20 miles on a 70-85F degree day is best for me if I want to try to control my pain levels (Yesterday I rode 30 miles, and discovered that it might be a bit far for me).

But bike riding’s not doing the trick it has  for the past few years, I’ve been shaking.

In fact, a few times this Summer I’ve gotten the ‘shakes’ so badly while riding I got off the bike and rested a bit until my hands calmed down. I’ve been ‘shaking’ in various ways for years, usually while I’m yawning or sneezing, but now it’s spilled into other moments, too, and has spread to beyond my hands.

I talked about this shaking with my rheumatologist, and a few years ago all kinds of tests were done (brain scans, other cool things) but there seemed to be no indication of Parkinsons (with which my Aunt Wanda suffered for many years).

Two weekends ago I began shaking while with a friend and our daughters in public, and aside from being humiliating, it was a bit terrifying.

So new appointments are being made, perhaps new meds will be tried. I love my bike, but it’s not doing for me what I have needed for so long (but I’ll never give it up!)

As I write this I realize how damned lucky I truly am! I have a source of income which allows me to work at my own pace when I feel strong, and to rest when I feel that’s necessary. I have a few good designs coming out in the next few weeks (more blogging about them in the next few days!) and, of course, there’s always History on Two Needles (more news about THAT coming up, too!)

I’ve cut down on my teaching because, well, I tire easily and I shake more when I’m exhausted. That doesn’t mean I’m NOT teaching (I’ll be at Interweave Knit Lab in San Mateo in early Nov 1-4) but I’ve definitely cut down on the extended gig trips that I feel may have contributed to my initial Fibromyalgia.

Bridging Fear

We think about our lives in different ways, on different days, trying to make sense of the incomprehensible.

Some days I think of my life as a long trip; a rough journey at times, an easy skate at others. In the movie Parenthood, Steve Martin comes to a place of peace when he envisions his life as a roller coaster. I find this a helpful analogy.

But there are periods when my life feels like a war zone – I think all of us feel that way at times – but it’s never been so vivid as in the past few years.

And, of course, being a child of two members of The Greatest Generation, loving history as I do, and making a hobby of reading about Europe in the 1930’s and 40’s, the war I can most easily reference is World War II.

This past year I’ve read several first person accounts of London before, during and after the war. The courage of the citizens is well documented; the steadiness, humor and ability to keep some semblance of a daily routine have resonated in my own personal life.

Early in the war, the citizens of London found ways to cope with incomprehensible terror. But exhaustion and time led to a war-weariness that made subsequent rounds of bombings 4 or 5 years into the conflict harder to bear. I identify with those late-war Londoners, too bone weary to head to the air raid shelters, numb with daily terror.

As many of you know, Gerry, my husband, has cancer. Multiple Myeloma, to be specific. When he was diagnosed in 2007 – soon after our family moved to Minnesota – the prognosis was poor; 2 years. At the Mayo for a second opinion this was reduced to 1 year, and a blessed numbness settled over both of us when we heard that.

A friend refers to this sensation as ‘god’s anesthesia’ and that’s not a bad way to think of the mind block that keeps overwhelming pain at bay. I wrote about our first year with cancer in my book Knit With Courage, Live With Hope, and it was a helpful way for me to face fear head on. I’ve heard from other caregivers that it has been helpful for them, too.

Fast forward 5-1/2 years and Gerry’s still with us, we feel that we are the most fortunate family in the world, even though the anesthesia has long worn off.

And I am exhausted.

This past Autumn Gerry’s cancer came back (his numbers were slowly creeping up since last Spring) and a new round of a trial drug, Revlamid, seems to be working well. His test numbers are up where they should be, down where we want them to be, including the dreaded M-spike.

But during those 5-1/2 years, aside from the many joys that our family has shared, something started happening deep inside of me; the slow, steady, unrelenting rise of fear.

A deep, broad river of apprehension runs through my life, fed by tributaries of dread and panic.

The first fear is obvious; fear of losing Gerry. But in the time we’ve had since his diagnosis I’ve lost so many friends and family members that this fear has been wrestled into perspective. It’s an understandable fear.

Right behind that first fear are all of the regular fears anyone in my position might feel: fear that I won’t be able to earn enough to keep the family going; fear that the kids will be strongly affected in a negative way by our experience; fear that Gerry will have more pain. All understandable fears.

The less understandable fears are the ones that haunt me: Fear that I won’t deal with this graciously (I haven’t at times); Fear that I will be harshly judged by outsiders (I have at times); Fear that as I struggle through this adventure I’ll behave in ways that are erratic and incomprehensible (I’ve done this, too).

And these fears, in turn, breed next generation fears that often DO overwhelm me: Do folks look down on me because I’m unable to cope with the fear? Am I really just plain weak, deep down inside? If I ride my bike an average of 8 miles a day and eat fairly well, why can’t I get thinner? (okay, this last more of a whine than a fear…)

Enumerating these anxieties helps me understand how fear can spiral out of control, overtaking common sense with panic, shoving self esteem out the door and replacing it with it’s doppelganger, pride.

Unlike self-respect, which is positive, life enhancing and resilient,
pride can be easily bruised and shattered.

Then, on the worst days, terror comes in uninvited. It kicks pride to the curb and allows self doubt, self loathing and self hatred to make a house call.

All of this anxiety creates stress, which overwhelms me.

I’m certain that – to a large degree – the genesis of my fibromyalgia is rooted in this stress. I believe that my current week-long intense back pain is a product of stress.

Spinning my wheels is how I deal with stress; sometimes I spin my wheels with non-productivity (Tetris and Scrabble, anyone?) and other times I bicycle. The biking is much more effective, and has a double benefit of reducing stress and physical pain while increasing strength and overall fitness.

But it’s winter, not a lot of bicycling is going on, and my body and mind are paying the price. I do yoga in the cold weather, I was swimming but found myself feeling so panicky in the pool that I had to stop, but nothing is like my bike.

It’s been a very rough Winter for me, fearful and painful and so many other bad-ful things. I second guess myself, my work, my abilities, my looks; then I third and fourth guess everything just for good measure. I’ve been in a bad place, re-living every negative interaction I’ve had, replaying every nasty comment I’ve overheard (or over-read), and it hasn’t been helpful.

And because I’m in a rather fragile state, the casual nastiness of an online comment or a thoughtless action are weightier than they would be if I were in a more stable, healthy place of mind.

I need to cross Ol’ Fear Creek, which has so overfilled itself that it’s now a raging whitewater. I’ve tried several times to throw myself into Terror Rapids, only to discover I’m no good with a paddle.

And, at any rate, Terror Rapids is probably a better place to be than Sh*t Creek…

I need to build a bridge over the fear, high enough above the raging river that I don’t get wet as I cross. I’m not exactly certain how to do this, but I feel sure that I have the tools and materials at hand.

The Winners of the Buffalo Gold Earth-Lite Are…

Jodie & Cheryl!

Totally picked at random, the winners of the two skeins of yarn (1 skein each) are Jodie and Cheryl – CONGRATULATIONS!

Thank you EVERYONE for playing my game, and thank you also for the Happy Birthday Wishes!  My birthday was yesterday, which is why I didn’t get online until late in the day.

Actually, I didn’t do anything very personal, but I did have my knitting group over for our monthly meeting and utilized the group members to model some of the final pieces for History on Two Needles.  A delightful evening was had by all (I hope!)

Stay tuned for another GREAT giveaway later this week!

PAIN

I was in a show almost 20 years ago in NY (an amateur theater production, nothing professional) where I had a small chorus part.  It was the musical “BABY!” (the exclamation point is key) and I had a funny bit where I sang about having many, many kids.

Another brief little bit was another choruster singing, “PAIN! The thing I cannot stand is PAIN! I told the doctor, ‘PUT ME OUT!'”

And that’s how I’ve felt this week.

It has been the most pain filled week I’ve had since I was diagnosed with Fibro.  Why this relatively sudden slide back into painville, I have no idea.

Many theories have been proposed;

  • Was it the single piece of bread I ate last Wednesday? (It came with a salad at the Minnesota Historical Society cafe and I held back until I put the tray on the return conveyor belt, then grabbed the bread as it was zooming away toward the dishwasher.)
  • Could it be pollen, or some other seasonal allergen that’s come to fruition in late August / Early September?  I don’t remember this happening last year…
  • Perhaps it was the 5 hours of standing/walking when I went to the political rally last week, compounded with the 4 hours of standing/walking at the MN State Fair this past week?
  • Or maybe my fibromyalgia is moving to a different level?

For those of you who may be new to the blog, I was diagnosed with Fibro almost 4 years ago and figured out soon after that one of my strong triggers for a flare up was wheat / gluten products.  I’ve been gluten free for 3+ years, but I have my moments of falling off the wagon.  Wheat Flour, I can’t stay mad at you…

Also, for those of you who may not be familiar with Fibro, it’s a REAL condition whereby the body acts as though it’s experiencing the worst flu ever. 

When I have a flare-up, I run a fever, my throat gets sore (usually that’s the first sign), I get body aches (in my joints and muscles especially), and I just feel wretched.

In all honesty, I feel that I’ve been slowly moving to this for a few months.  Movement’s been harder, pain’s been more frequent and intense, and even a long bike ride hasn’t been able to assuage it.  I’m off for a long ride today to my allergist for my monthly asthma Xolaire shot, and I’m going to ask him if there have been any indicators to link fibro pain with that drug (this will be my fourth month on the drug)

Well, aren’t you glad you stopped by for Fibro Chat?

HISTORY

The book is coming along very well, layouts are looking great, the tech editor is moving through the patterns (now I have to do the hard job of actually ANSWERING her questions!) and the photography is pretty much finished.  YAY!

As soon as I have dummy layouts I’ll be contacting folks who Kickstarter Pledged at the ‘name a pattern’ level and the ‘dedicate the book’ level with so they can give me their creative input in the form of pattern names and dedication!

I’m SO excited about this book, I can’t stand it!  It’s looking so great, and I’m thoroughly enjoying the ‘fun part’ of the book.  It makes me think I should look for a job in graphics (I’m becoming quite Adobe CS savvy!)

Exhaustion, et al

This is straight up complaining.  I apologize in advance, please feel free to deposit your own current nagging annoyances in the comments section and we’ll all feel better for having dumped a bit.

Tomorrow I have a nice, special book giveaway; but today I kvetch.  If you’ve noticed I’ve been quiet, it’s for 3 reasons:

1) I’m knee and elbow deep in History on Two Needles, and it’s going REALLY well!  I’m putting the kickstarter funds to excellent use licensing images, upgrading InDesign, and hiring photo assistance.  Life is good.

2) I’m friggin’ exhausted.  For the past few months my doctor’s been phasing me off of prednisone, and I’m not hungry enough to eat the cat anymore (the cat is relieved) but the Xolaire doesn’t seem to be filling in the gap.  I notice each day is a bit harder and harder on the bike – breathing is becoming more difficult.  Damn.

3) Slow pain.  Bad breathing leads to less biking, less biking leads to increase in pain, and it all happens so slowly that if I didn’t keep track of it I wouldn’t believe it.  But there it is.  My fibro is creeping up, it’s getting worse. It scares me.

Yesterday a friend was visiting from out of town, I met her on my bike and she and her kids and I went to playground.  The kids ran around, I didn’t do much (a little pushing, some kid lifting, nothing really!)  Then she drove to my house while I rode my bike.

When I pulled up behind her on my bike – after maybe 3 total miles of riding – I was absolutely wiped out.  We did a quick drive around the ‘hood and stopped at my favorite local fabric store, and that brief bit of walking just did me in.  I feel like I’m 60.  I know this deep, deep exhaustion stems from the breathing, but I just don’t know if I can face going back on prednisone.

My options seem to be:

  1. Happy and exhausted; or
  2. Fat, pissed off and able to breath.

Seriously, though, in the scheme of life this is an annoyance, but life is still damned good.  DAMNED good.  And Gerry’s making tuna salad, so how bad can things be?

Knitting and Crochet Blog Tour – Crafting Balance

Balance is elusive.

For me, balance implies a certain skill in finding the important center of things, then working out from there – not allowing any one auxiliary part to extend or overweigh the other parts.  Those who spin wheels (to make yarn, to move a bicycle, to hoop a hula, to form a pot, to carpool kids) understand this with all the small parts of their bodies.

And, as I’m fond of saying in my classes, sometimes our bodies (hands, nerves, muscles) are smarter than our brains.

I Like To Ride My Bicycle

For this reason, balance has become a  PHYSICAL thing to me.

Actually, I should say that the act of discovering the balance between physical and mental has allowed me to feel more secure in my design / teaching / knitting / crocheting / living / mothering / wiving / friending balance.

That’s the thing about balance.  It’s not forever, it’s not constant.  It changes, shifts, and we can lose it.  Balance also requires speed (it’s easier to keep balance on a bike which is moving faster-than-walking-speed than on a very slow moving bike.)

The physical touchpoint of my own balance has become my bicycling.  By jumping onto my bike and riding an average of 6-7 miles a day, I’m able to keep my blood flowing, stretch out my lungs, see the neighborhood from a slow moving perspective, connect with the world around me and reduce my fibromyalgia pain significantly.

My rheumatologist told me that she feels the increased blood flow is probably the reason for my decrease in pain, which makes sense to me.  All I know is that I feel better, my joints hurt less, and I’m happier when I get a ride in.

Having Fibro has forced me to embrace my humanity (and humility) in ways I hadn’t expected.  Well, who DOES expect this – we’re all superhuman when we’re young, aren’t we?

Fibro forces me to monitor my resources, gauge how much energy I have and how much an activity will take, and leave time after a big event (like Yarnover this past weekend) to recover my physical strength.

To folks who haven’t done it, standing in front of a class of 20 folks and explaining the intricacies of knit techniques may not sound like an energy-zapper, but it IS.

I’m an extrovert to the extent that being around folks recharges my batteries, but I’m also an introvert in that I need time alone to recharge different–but just as necessary–batteries.

For this reason bringing my bike to Yarnover and taking a chilly ride from the teaching location to the teacher’s dinner and back to a friend’s house for a post-dinner get-together was one of the best things I did. It compelled me to create time and space for myself, AND to get some physical exercise in and bike away the stiffness of the day.

I travel light when I bike; I have a small basket and now I own a cool hobo bag from Steven Be that slings over my shoulder, and that’s about it.  Lighter means balance is easier, nothing is harder than trying to carry a large load of groceries in the front of my bike, and that’s a lesson I try to take into my non-biking life.

Carrying around grudges, hurt feelings and leftover pain can do nothing but cause my balance to shift uncomfortably, and that will make me fall.  I’m working to learn to let nonsense that doesn’t add anything to my balance GO.

For someone with an insanely inconsistent and dogged memory, this is a hard, hard thing to do.

Here’s a wonderful quote I heard today:

“Forgiveness means giving up all hope
for a better past.” – Lily Tomlin

The quote reminded me that forgiveness doesn’t necessarily mean that the person who’s receiving the forgiveness is even aware of it.  After all, don’t we often cause offense without realizing it?  Maybe we can forgive in that same anonymous way?

So my balance for this day (this week, this year – this life?) is trying to figure out how to let go of the myriad hurts I suffer (self inflicted or not) and forgive the source of them, even if that source is me.

Maybe by doing this I’ll be worthy of forgiveness myself.

Or, as my friend London says,
“Be very kind to them, it screws with their minds…” 
That works. too!

I get all this from my bike, my family and my friends.  And I get a great deal of it from my knitting–that is the place I go for balance when I feel I’m lacking it and veering off course.

When the center is refusing to hold, I pick up my knitting, speed up my fingers and try to slow my mind.

Sleeping in San Jose

Once again I’ve been quiet, thank you for your patience!

It’s for mostly great reasons – a lot of work!  Suddenly I’m engaged in several designs, writing a few articles and arranging teaching trips for the coming year.  October is going to be HUGE for me, I’m hoping I’ll have the stamina to carry it off!  But I’m always at my best in the Fall – my favorite time of year.

I’m at Stitches West in Santa Clara, my first visit to Stitches as a teacher and I’m loving it!  For some insane reason I’d almost forgotten how wonderful the marketplace is, and spent several delicious hours strolling the many aisles, falling in love with yarns and beads and patterns.

I remember when I was just starting my second design career in 2001, visiting Stitches in Pennsylvania in October and being rather overwhelmed (in a good way) with the variety.  I still have many of the items I bought on that trip, and I can remember individual booths as if I stepped into them yesterday.

It’s been 10 years since I’ve even BEEN to a Stitches (if I’m not teaching, it seems like a superfluous expense to entice myself to buy yarn I SERIOUSLY cannot afford!) and because of that decade-long-break my walk through the market was almost as mind-blowing as my first in 2001.  Later I’ll write about individual booths and great items, I was just getting my sea legs yesterday!

My View

It is SO beautiful here – absolutely wonderful!  I arrived on Thursday and discovered the lovely San Jose airport.

I’m falling in love with small airports.  Little Rock was wonderful, just the right size (and free wifi!)  San Jose airport is another little jewel.

I rented a car because I was able to find a bargain ($25 for the weekend) which was cheaper than either a shuttle OR a cab, and I really love having my freedom.  I feel so trapped sometimes when I’m at the mercy of $10 bowls of oatmeal and few gluten free options, a car gives me a sense that I can escape when I need to.

My room is lovely – the view is gorgeous – and I truly appreciate the hypo allergenic sheets, bed, etc., which – although boring – are fabulous in that they allow such a great night’s sleep!  Boring is beautiful!

I’ve discovered a restaurant here – Hobee’s - which has a LOVELY gluten free menu.  It’s not huge, but it’s definitely appreciated!  I had breakfast there yesterday, and I may again this morning (gf pancakes!)

Immediately upon obtaining my teaching packet I ran into a good friend, Lorna Miser, and we had a lovely chat.  I’m a bit of a recluse when I travel, unintentionally anti-social, because teaching zaps my energy SO severely.  An impromptu and unexpected visit with a friend is a gift.

I’ve only been scheduled for one class a day, which is a bit of a treat for me and allows me time to get some work done, and perhaps even to work out this morning!

I’ve reached the point in my Fibromyalgia journey when I realize that saving up my energy is the best plan on teaching trips.  Students have paid good money to get as much of my strong, clear attention as possible, they deserve it.  When I deviate from my energy saving plan and socialize, I’m not able to give 100% of my limited energy, and that I’ve failed in some way.

Embellishment Class Swatch

My classes are full, and my first class yesterday (embellishments) was absolutely wonderful!  The students were above and beyond my expectations – each one smarter than the next – engaged and eager and so much fun!  I could have taught that group for 6 hours and not cared!

As it was, I went over my time limit (so hard NOT to do with 24 students) and tried to make a connection with each woman.  That’s hard – it’s natural to want to gravitate to a few students – but giving each one a bit of her “own” time pays off in comprehension.  As always, I learn so much in my classes, and I’m very grateful to my students!

One student had just returned from a wedding trip to India, showing hints of a hennae mehndi tattoo on her hands.  I was enchanted, and loved how the beautiful design was offset by the carpet in the classroom.

Off now to the fitness room, then breakfast and a private lesson before my class – life is good!

Judgey Part II – Who Am I? Why Am I Here?

My first interaction with my husband was a letter he sent to me which opened, “Who am I? Why am I here?”

He was referencing James Stockdale who quoted that line in the Vice Presidential debates of 1992, but it’s not a bad question to ask ourselves every now and then.

We have different categories that we fit ourselves into, we switch it up every now and then, we settle into some identities and reject others.

When I was around 15 I had a revelation that we show different sides of our personalities to different people.  Therefore, when someone is considered to have “changed,” perhaps they’ve just shown a different side to their personality.  I was a deep thinker.

No one person is the same to everyone all the time.  We do different little dances with different friends and family members, we strive for consistency, but we don’t always achieve it.

I feel the best we can hope for is keeping a strand of “true” personality running through most of our relationships so that folks can count on us, retaining enough elasticity so we can be flexible when we need to.  Not unlike a nice strand of springy merino…

Some of the Family

My own identity is tied up with my work (designing, teaching and writing), my family, my convictions about being part of a community and – as I addressed in my last blog post – my body identity.

Each of us has a different recipe, a different mix of what makes us the person that the world sees, and that recipe changes as we grow (or shrink) through our lives.

The past few years I’ve been having a minor crisis of identityConfidence?  I’m not quite sure what, but there are days when my neurotic Junior High school self would have been a welcome relief to my own middle-age angst.

The reasons are so obvious that it hardly bears mentioning – and I’m certain that by mentioning them I’ll garner some snarky comments on some chat board somewhere – but they are twofold: Gerry’s illness and my own Fibromyalgia.

Tin Fish, I "work" here sometimes...

Working – designing – as fast as I can, it’s still pretty hard to earn a decent living.  Smarter designers than I augment their incomes with yarn lines, connections to major yarn and knitting tool companies and television hosting gigs.  I admire them for this, and I would by lying if I didn’t admit that I envy them, but I haven’t felt the right kind of energy to pursue this angle yet.  I’d love to, it just hasn’t been in the cards/stars/roll of the dice so far.

But I’m troubled by my envy, by my current lack of visibility, and I’d been trying to find a way to mentally work through this.  I think I stumbled onto it this weekend.

The Analogy Part

As I was riding my bike in the Minneapolis Bike Tour this past weekend I paced myself behind a pair of women who were going just about my speed.  I stayed a good half block behind them for a few miles, feeling like I was almost part of a group, but happy in my solitude.

The First Flat Fixed

Then I began flagging.  I couldn’t keep up, it was getting very hard.  I changed gears, pedaled harder, but off they went, disappearing ahead of me as I found myself grounding to a snail’s pace.  Bye, bye.  Write if you get work…

I was so intent on keeping up, on staying at the same speed, that I hadn’t noticed that at some point in a gravel-and-glass section of a side street I’d picked up something that had punctured my tube.  I had a flat tire.

This was especially frustrating as I’d had a flat at mile 7 of the ride, but that one happened just a few blocks from a pit stop and was fixed so quickly it almost felt as though it hadn’t happened.  I was told by several riders that it was flat-heavy ride this year.

It was raining pretty hard, I was cold and sore, I felt miserable and I ached all over.  I pulled out my cell phone to call Gerry and ask him to come and pick me up, but then I put it away.

I was about 20 miles into the ride and I just didn’t want to give up so easily.

So I walked, pushing my bike along the path and feeling the “Ride, Fat Girl, Ride” logo printed on the back of my shirt burning like a brand of shame and humiliation.

Thin, fast, fully-air-filled-tire riders shot past me, I stumbled on.  Oh, the humanity.  Oh, the humility!

As I hiked to the next pit stop where I hoped I’d be able to get a tire change, I realized that this section of the ride was like a metaphor of my current situation in life.

The Metaphor Part

I’d been shooting along pretty well, designing and writing (3 books in 2 years) and making appearances.  Then I got a flat – our family got a flat; Gerry got sick.

We put all of our efforts as a family into getting through it, and now we’ve found a different dynamic.  After his stem cell transplant in 2007 Gerry’s Multiple Myeloma has become something we try to think of as a chronic illness rather than terminal cancer.

Gratuitous Peek at a New Hat

Gerry has a lot of pain, he has to rest a lot and his activities are severely limited, but he’s here for all the important reasons (love, laughter, support)  He’s here for all the reasons I married him, and in all the ways that make him a great dad and wonderful person.

Continuing on, just as our family was finding a new groove, I got sick.  Not sick like Gerry, not life threatening, but definitely income and identity threatening.

Fibromyalgia certainly isn’t going to kill me, and I’m learning new strategies every day to deal with it, but it’s something I can’t ignore.  The energy it takes to keep track of my energy is wearying.  I find myself beating myself up constantly for not being able to get as much done as I used to 5 years ago (not helpful) and there are times I become rather depressed and allow myself to feel useless.

Which is not true.

But sometimes we let our minds go to dark places, I’m not alone in that.  Comparing myself to folks who are able to ride past me right now (with their fancy air-filled tires) isn’t helpful, but it’s human, and it’s understandable.

I’ve been guilty lately of judging myself very harshly based on things that are a bit out of my control.  I feel guilty that I do something I love so much (knit design) but which brings in precious little money and no insurance.

I’ve been applying – and interviewing – for several jobs locally but each long process has ended – as it has for so many folks these days – with a “Thanks, but no thanks – you were our #2 candidate, but we’re going in a different direction…”

And then I begin to feel worthless.

Which is also not true.

The slight relief I feel when I get turned down for a job is in direct proportion to how many fibro flare ups I’ve had that month.  There is a nagging fear that if I did snag a job, I’d be unable to do as well as I need to while trying to adhere to a schedule that may not take into account my body’s current oddnesses.  That’s one of the big benefits of designing/writing/teaching – I can generally do it at my own schedule, or gear up for a teaching weekend by getting a LOT of rest before and after.

The Wisdom Part

I want to take away some kind of gift, some wisdom, from this metaphor.  So I ride my bike like a maniac.  The energy it takes is a small investment for the energy + joy + pain relief I get back in return.

There have been online
mentions that I must be faking
the fibro if I’m able to bike so far,
I assure everyone that’s not true.
Spend a few days with me and you’ll
see how movement is rather difficult.

I try not to judge myself too harshly, I try to be smart and hard working and organized (organization is one way to circumvent energy loss) and I try to remind myself on a daily basis that self-love isn’t indulgent.

In the same way that as I walked my bike this past weekend, concentrating on keeping my body warm and stretched so I didn’t freeze up, I continue designing and writing and teaching.  Maybe not at the speed and level I did when I had a full tire, but I can’t let myself get cold.

If I let myself listen to the harsh, judgey voices I’ll definitely freeze up, slow down, maybe even sit in a sad heap on the curb in the rain and begin to melt away.  So I try to either ignore the judgey voices, reason with them or sing really loudly.

Rainy Pit Stop, With Extra Oranges!

I’m still working out a good strategy to get me to the next pit stop where I can, hopefully, get my flat fixed, have a gluten free snack and a drink of water and get back on the road.  That’s why it sometimes takes me a long time to blog, to get my newsletter out, or to get some designs worked up and written down.

But if you look for me, I’m there.  I’m strolling along the side of the road in the rain balancing my handlebars in one hand, a slice of orange in the other, singing.

Me & Colbert, Mile 35, 1 to go!

The “Judgey” Thing

Judge not.

I’m not a practicing anything in terms of religious affiliation.  I attend our local Temple, we’re members and I’m relatively active, but I’m not Jewish.  I was raised Methodist, but there’s what whole ‘divinity’ thing that I wrestle with, so I’m not really a practicing Methodist.

I’m not religious, but I’m definitely not anti religion – there’s a great deal of good, of wisdom, that can be learned from faith practices around the world.

One of the best, one of my favorites – Judge Not.

Ironically, it’s one of the hardest for the mainstream religions
to adhere to themselves, but that’s for another blog post…

I want to talk about Judginess.

Specifically, judginess in terms of how we look at ourselves (today’s post), and how we look at our chosen recreational activities (knitting, crochet, biking, macrame, spoon juggling, whatever you do in the privacy of your home…  or in public – future blog post.)

We can be rather harsh when it comes to analyzing other folks work, and even more harsh when analyzing our own.  I’m one of the worst offenders, although I try to be honest and loving in my self criticism.

I remember hating my body SO severely in my youth, dieting like a  maniac until I was a size 10 (for about 15 minutes – remember, I’m six foot tall) and heard the unforgettable words spring forth from a new acquaintance, “Why, it’s obvious you’ve NEVER had a weight problem!”

At that moment I could have died and gone to heaven.  Literally, I could have died because I hadn’t eaten a solid meal in a few days.

However, life being what it is, my weight tends to go up and down, and – unlike smoking or gambling or almost any other vice – overeating shows like a neon sign and allows all who are inclined to judge very harshly the moment you come into view.

I am sometimes my worst critic, I understand the running commentary of self loathing that streams through the soul of most overweight folks, I know how hard it is to ignore/stop it and how necessary that is in order to effect any positive change.

But I also remember the day I stepped into the shower, hating the glimpse I caught of myself as I rushed past the mirror, but then came up short when I realized, “How can I hate my body so much if it gave me two wonderful kids?  How can I hate this body that allows me to walk and live and enjoy life?”

That realization didn’t make me an ounce thinner, but it did open a small door of self love that I try to pry open a bit wider every day.

Sometimes things happen that practically slam
the door shut, and I have to wedge some kind of
metaphysical shoe between the door and
the jamb to keep it from closing.

And it’s self love that allows me to do things like care about what I put in my mouth (less sugar, more fiber, no gluten, even when I’d KILL for a biscuit) and what I do with my body (ride my bike as much as I can, do yoga when I can’t.)

Love is not a pie, you can’t slice it up and divide the pieces.  Or, if it is a pie, it’s a magic pie that makes newer, bigger slices the minute you cut one and slip it on a plate for your Aunt Mable.  This is not my best analogy, I’ll work on it…

Self-love is the same, it spreads and grows the more you exercise it.  Self love allows you to fend off judginess that comes from outside.

Without self love, EVERY type of criticism feels like a slap.  Self-love separates the barb from the honest criticism (although it doesn’t necessarily make the criticism easier to hear!)

Me & Colbert, Mile 35, 1 to go!

Yesterday I finished a 36 mile bike ride.  I went slow, I took my time.  It was raining and cold for most of the ride, which are both things that exacerbate my fibromyalgia and make me ache all over like I have the flu.

I’ve certainly ridden faster, and the two flat tires I got during the ride didn’t help my speed, but I finished all 36 miles and I was very happy with my effort.

NOT dressing to advantage...

Until I looked at the photograph a very kind volunteer for the Minneapolis Bike Tour took of me at the finish line.  “That’s me?  I’m that fat?  Seriously?”

I didn’t FEEL that fat as I rode.  I felt like Lance Armstrong.  I felt like a thin, beautiful, French resistance fighter shouting, “Vive la France!” as I darted across the French countryside.

This is my own personal biking fantasy…

True, I wore my “Ride, fat girl, ride!” T-shirt, but – seriously?  I look like this?  Yes, yes I do.

This is the body of a woman who just rode 36 miles, who averages 6 miles a day, who eats pretty well (although I do like my chocolate) and who could probably eat better.

This is the body of a woman who has given birth twice, just turned 50, and is trying hard to be unashamed of herself.

And who is trying even harder not to judge herself too harshly.

Bike Summer Games

Okay, you’d think after my wild ride on Friday (and the subsequent Day O’Pain that I experienced yesterday) I’d have put the riding behind me for a while, but no such luck.

I’m off today to take advantage of the 70’s temps & the lovely breeze (thank you, Minnesota, for returning to your usual Summer weather sanity after the madness of last week…)

My bike at Como Park

I’ll try to ride out the kinks.  I swear, a day without riding and my joints get very testy.

And, on top of that, I had some DELICIOUS risotto from Trader Joe’s yesterday that Hannah was making for herself and Max, but unfortunately it contained wheat and I was laid LOW all evening with my flu-like fibro flare up.  Damn.  It doesn’t take much.

But back to the biking!

One biking website I like quite is bit is Let’s Go Ride A Bike (LGRAB) and, although I haven’t participated before, I’m going to participate in the LGRAB Summer Bike Games!

It’s pretty easy, and not physically challenging at all, something I can do without breaking a sweat.  Although, let’s face it, this summer you can’t do ANYTHING without breaking a sweat!

Here are the 10 events, completion of at least 4 is required to qualify.

  1. on vacation? rent a bike and go for a ride!
  2. write a letter advocating for bicycling infrastructure (bike lanes, bike rack, etc) to your alderman/council representative, mayor, or a local business.
  3. take a picture of something along your commute that says “summer” to you, and explain why
  4. commute to work by bike or bike/transit if you don’t already
  5. perform a maintenance task on your bike
  6. explore a greenway or bike path in your city that you haven’t previously visited
  7. test ride a different type of bike than you normally ride (road bike, mountain bike, etc.)
  8. read a book about cycling
  9. ride your bike somewhere new in your city
  10. go on a group ride

The only hard part is that I have to do the 4 between 2 set dates (7/22 and 8/4)  I’ve done most of these already, but now I guess I’ll re-do some of them!

Today I’m going to accomplish several criteria:

  • ride to someplace NEW (#9 – Como Park),
  • do some minor maintenance work on my bike (#5 – fix my broken basket)
  • explore a greenway that’s new (#6 Como Transitway to Mpls)
  • take a picture (#3 – my camera is ready!)

…and in so doing I’m going to get myself BACK to a pain free place.  I am. Really.  I promise.