Tuesday, September 21, 2010 By Rick Levine
(Aug 23 – Sep 22)
It hasn’t been easy accepting the limitations that have been placed on you.
Now, as you finally acknowledge your role in a relationship or on the job, something happens that opens the door of possibilities to what you once wanted but have since let go.
Naturally, this can be exciting, confusing and upsetting all at once. Take a few deep breaths while you consider your choices.
Keep in mind that you have more time than you think to make up your mind.
To say the past few weeks have been – ahem – rather rich and full would be an understatement.
I’ve traveled a LOT – both engagements scheduled last year, long before my diagnosis of Fibromyalgia.
I hadn’t considered canceling either Scotland or Italy, I wanted (selfishly, perhaps) to do both of them, Gerry encouraged me, and I hated the idea of setting a precedent of bowing out of something due to my health.
So I dedicated myself to staying as healthy as I could while in both locations. For me, that meant lots of rest, and lots of exercise. The bike is my favorite exercise method – it allows me to get around, and it’s like taking a big pain pill – it’s quite good at making my aches go away.
The blood flows all over, reaching places that hurt, and they hurt less (or at least that’s how I understood what my chiropractor told me…)
By renting and riding bikes in Scotland and Italy, the trips – and my life – have been the richer.
But even with all the bike riding in the world, the past few months were full of the usual travel tsuris, plus a few added crisis tossed in for extra chuckles. It became – at times – quite overwhelming.
And, as is often the case when I feel overwhelmed, I begin to question everything about my life. What are my plans? Am I reaching my goals? How pure are my actions? Why am I doing what I’m doing? How long can I continue to work if I have to take a nap every day? When did I turn into my grandmother?
Recently it feels like everything in my life is a question on the huge Jeopardy! board in my head (“I’ll take ‘Dealing With Fibromyalgia’ for $50, Alex”)
But the horoscope today gives me hope – it makes me feel like I don’t need to rush.
I always feel like I need to rush.
I wish I were further along with History on Two Needles.
My brain is not processing the math & patterns as it should, and that’s stymied me. I’ve found a wonderful local tech editor who I think will be able to put up with my oddnesses, I have a good friend who will help me sort out how to deal with the art direction, and I have yarn for the last few projects that need to be knit up.
All I really have to do is get the danged patterns written! And that’s something that takes time. The older I get, the more it seems that I require an easing in phase before settling in to write a pattern.
Whereas 5 years ago I could just grab an hour, plop down at the computer and work up the math for a project, now I need to settle in with the worksheet and reacquaint myself with the project for a few hours before my brain will go to the ‘math place’ and I can make sense of the structure.
The fact that most of my patterns have an unusual construction doesn’t help, it often gives me the uncomfortable sense that I’m reinventing the wheel when I start to write a pattern.
On the other hand, I can look at my designs as pieces of origami. No matter HOW good one is at the creating cranes or salt boxes or paper elephants, each new project begins with a few simple folds.
One can’t just skip over the first folds, these basic steps must be performed to allow you to move on to more complex folds.
It’s not that one is reinventing the fold, it’s that the first steps cannot be skipped.
So right now I’m gearing myself up to settle into a pattern writing phase, (brilliantly coordinated to kick in when I return from my next teaching engagement in Pennsylvania.) October will mark an extended period of HOME TIME, and October will be pattern writing month.
My current mental preparation before the onset of “Worksheet Wonderland” are like those initial folds in an origami project. (And it allows me to rationalize the time I’ve spent playing sudoku.)
I’ve hesitated in recent weeks to write about my health – it’s hard to read that you’re “moaning” about yourself – and I hate to go down that road.
Obviously I don’t think I’m moaning, but then no one ever does, do they? I try to be pretty positive, pretty pro-active and intelligent about what I write and what I do related to Fibromyalgia. But it’s a huge part of my life, I can’t deny that, and therefore it has a large impact on my design, writing and teaching.
So far, 9 months into this diagnosed adventure, I’m learning that every day is a new lesson. I’m realizing that any boundary I discover is a moving target (why can I do X on Monday but not on Tuesday? And why can I do it again on Wednesday?)
Here are a few truisms that I’ve discovered:
- Wheat and gluten make me hurt, they make my joints and muscles ache, my throat becomes sore and my ears ring like a carillon. I can be laid up in bed for days with these flu-like symptoms after eating a bit of wheat, even a tiny bit.
- Wheat and gluten are in a LOT of products, but it’s easier to avoid them than I might have thought, and there are some very good alternatives.
- Vitamin D3 is like a miracle for me. When I err and take some wheat, I can flush it out of my system more quickly with a lot of water and some Vit D3. I take a good amount each day, and when I skip it, I feel it.
- I get more tired physically than I used to. When I get tired, it’s like a light turning off. There’s not a lot of warning, and suddenly I’m almost paralyzed with exhaustion.
- Perhaps counter-intuitively, a good amount of exercise each day will keep the pain to a minimum and raise my energy levels. When I go for two or more days without a good bike ride or yoga, I hurt like heck the next day. Which makes movement even harder.
- Very hot weather is hard for me. Very cold weather is hard for me. Wet weather is hard for me. I am feeling rather fearful of this Winter, hoping that I’m able to use activity, vitamin D and rest to stay relatively pain free.
One of the hardest things is dealing with folks who either can not, or will not, understand that I can be paralyzed with pain – to the point of tears – on Monday, but able to ride my bike 6 miles on Tuesday.
I hate being seen as a victim, but at the same time I refuse to be ashamed of being ill, to not talk about it at all. It’s not in my nature to suck it up and be silent, I’m too much of an extrovert (and, to be honest, a ‘me-show’) for that.
I want folks to understand that this is a manageable condition. It’s not fun, but it has forced me to be more intelligent about the way I live my life, and that’s not a bad thing!
I haven’t had to take medication specifically for Fibro yet – I am currently not insured so I couldn’t afford them anyway. I’ve been doing well so far with diet, exercise, Vit D3, rest, chiropractor, massage every now and then AND acupuncture when I can.
Having said that, though, I do have days when I’m just out of commission. More days than I like to admit.
And the days when I am functional are less full and busy than they’ve been in the past, and they’re fewer and farther between. Less work gets done than I’d hoped, less money is earned, and I feel – like many folks these days – a little worried. But what would life be without some worry to keep us honest?
Excuse me while I gracefully collapse onto the fainting couch…
Sunday was the Stitch & Pitch Twins game, and I’d planned on attending with Steven B’s group. At the last minute Steven told me another ticket had become available, so I grabbed it for Max (he hadn’t been to a game at the new Target Field yet.) It was a beautiful day, so we made the decision to bike over to Steven’s and then to the game (12 miles total) knowing that if we got tired we could hop on a Metro bus (each bus in the twin cities is equipped with a bike rack) so we’d be in good shape.
The ride was wonderful! It was easy going, the uphill parts didn’t seem bad and the downhill parts were a blast! Sunday morning the streets were pretty empty, traffic was at a minimum, and Max and I stuck to bike paths and back streets as much as possible.
It was – as always – a delight to see Steven, to see his great space, and after picking up our tickets Max and I headed over to Target Field. Now THAT is a beautiful ball park! We sat in the bleachers, just behind the 1st base foul pole, and enjoyed as much of the game as we saw.
Around the 7th inning I could feel a pretty strong Fibro-flare up coming on. I can tell one’s on the way when my muscles begin to ache, my throat gets sore and my ears ring. It’s almost like clockwork, now that I know what the signs are. I think in this case it was sitting for an extended period on metal benches in a shady, cold area (yes, it’s Minnesota…) but for whatever reason, I knew that I had a doozy of a mini-flare-up coming.
So Max and I made our goodbyes (and THANK YOU to the kind woman who tossed some kettle corn at Max! We all enjoyed it thoroughly!) and headed off to the bus, conveniently located just below the stadium.
We caught the express, got our bikes all settled on the rack (I was pretty shaky by this time, when I called Gerry I dropped my iphone and cracked the glass – phone still works. Gerry’s confident that he can fix it) and in 20 minutes were were a mile from our home, so we hopped off the bus and rode the rest of the way. Wonderful!
Despite the expense of the day (perhaps guilt at being away from the kids for so long had a bit to do with that. The tix were $20 and there were food items purchased at the park…) it was SO great.
Sunday was a good example of how I can deal with the Fibro while getting as much as possible out of life.
I rode when I could, I I interacted with other folks as much as I could, I stayed as long as I could, then when it became too much for me physically I made my exit and got home with minimal stress.
I’ll remember Sunday as a really golden day – a very hopeful day.
9 thoughts on “Hope From Mr. Levine”
I just signed up for your October combination knitting class on-line. I’m excited.
I have recently noticed that the Crockpot 365 site/blog seems to be really emphasizing gluten-free cooking. I thought that might be of some help to you if you didn’t know about it.
I enjoyed reading about your tour.
I hate to add to your problems, but the RSS feed isn’t working with Google Reader. I had to manually add your url (ok, cutting and pasting) as a new subscription in Google Reader. Trying to add it by clicking the RSS feed/Google buttons only brought up older posts (the last one was from March).
I love reading your blog and so will now happily catch up on what I’ve missed.
Keep knitting and take care!
I’ll try to figure that out. I love WordPress, but since moving I’ve been terrible at figuring out how to make the feeds work. Dang.
glad to hear that you are feeling more positive mentally and stronger physically. FM is a PITA and you have to learn to manage it as best you can,
( saw you in Edinburgh in 09, loved the class & learnt so much! hugs to Gerry x)
I am so glad the trip was fun and that you were able to ride your bike everywhere. I’m a baseball fan too and hope to see Target Field some day.
I think one of life’s biggest challenges is knowing how to leave when things are still “fun.” Great to hear you enjoyed the ball game AND knew when to leave! It is so hard to accept limitations…and to know things are going to be different now than they were. That said, as long as one works at packing in as much joy and positive productivity into every day, lots can happen. Things can still be great. Just (as your horoscope says…) be patient with yourself. You can still do amazing things! 🙂 How was that for a pep talk?!
Dear Annie. Don’t hesitate to talk about your life in any way. I, too, live with a chronic illness and granted people don’t always understand it. How could they really when they haven’t had the experience. However, that shouldn’t put a “gag order” on your conversation.
Thanks for your blog, knitting, family, illness, worries, fun, travels, etc. Enjoy it all. I certainly do.
Annie, I wholeheartedly agree with Judith. You write passionately about EVERY aspect of life. If someone wants to focus on a single one and label you for it, they’re clearly missing the bigger picture – and all the other interesting and thoughtful commentary you provide. Your writing is powerful because it’s genuine and ‘un-homogenized.’ And I hope it remains passionately so.
I want to send you a new book — it is about diet control of auto immune diseases — shoot me an email with your address and I’ll send it along — It may help.
I’m a huge admirer. You show so much pluck and courage — and you do more in a week than I’m capable of doing in a month.