I’ve Moved to WORD PRESS!

I have to thank the lovely and talented Adria Richards for giving me the sense that I actually COULD move myself! [and guess what, Adria, go-daddy has Word Press apps!]

More time passes between blog posts, and it makes me sad. Not ‘Heidi-Klum-looking-at-a-dreary-dress sad’, but almost.

As you’ve probably guessed, I haven’t blogged because of what seems to be a fully blown fibromyalgia flare up. I have no idea what triggered it; I’ve been keeping pretty serious records of what I eat, what I do, but all that data is absolutely no help so far.

I was so troubled by this whole return-of-the-painful-fog episode that on Friday Gerry & I saw my rheumatologist again. He didn’t have much in the way of new suggestions, but he wants me to see a neurologist to check my brain and then with a clean brain-scan I can begin visiting a fibro clinic near my home (I can ride my bike!)

He also suggested “seeing someone” to deal with the stress involved in this whole new [unwanted] chapter of my life, which is not a bad idea.

Much of my current stress comes from the fact that I am not just riding the bus, I’m also the one who is driving it. Unfortunately, many days I’m asleep at the wheel.

Almost as annoying as the pain and my inability to remember words, numbers – so many things – is the constant tinnitus that squeals through my head. Worse when I’m tired, it’s so loud by bedtime that I fall asleep with the TV on to drown out the high pitched whine.

[a side note – I do appreciate all the comments and private emails I receive, but please don’t email me any more about sleep health. That’s been checked, my sleep is dandy, really!]

This week I turned down 3 teaching jobs for 2010, I just don’t think I can do them. I think many days I can just sit.

Just getting through the appearances I’ve already set up will be a bit of a push, I don’t see how I can add any more. This is the point when I fear falling even farther behind in everything.

Which is when it’s good to remember that Gerry went through similar mental difficulties when he was diagnosed 3 years ago. I know I’m not alone.

I’ve felt guilty about how little physical effect I’ve had on the family – not able to clean very much, not able to cook meals, not able to talk on the phone. Happily, Atticus has been with me every non-step of the way.

To assuage my guilt I went with Max on his class ski field trip (I drove my own car so I could rest or cut out early if necessary – it wasn’t) The day was pretty much just sitting and watching kids come roaring down a hill at breakneck speeds, the slope was a mere 40 minutes from our house – all in all, a wonderful day.

But just driving there, showing my face, then sitting and crocheting for 4 hours absolutely WIPED ME OUT. I couldn’t believe how exhausted when I got home.

This is my new reality.  Realizing it is unreal.

Slowly – very, very slowly – I did some sewing yesterday that has been crying out for completion for about 3 years. I finished a slipcover for our sofa-bed (the upholstery was ripped and cat-shredded) and a matching foot stool cover. You can see part of the sofa in the photo above, under the dog.

Making a slipcover for this particular sofa is something that I’ve done twice in the past 13 years, each time it took about 3 hours. Slip covering is something I do pretty well – not perfect – but serviceable.

Yesterday it took me all day, from morning into the evening, moving very slowly. Don’t even get me started on how slowly I’m knitting these days.

But I felt such a drive to finish it – to have SOMETHING concrete to show that I’m still contributing to the comfort of our home – that I’m helping us keep it together. And with every stitch I understood how pathetic that would sound, but it didn’t make it any less true.

However, the seeds Hannah and I planted are coming up much faster than we anticipated. Very nice to see. Does anyone know if the Topsy Turvy planter will work for beans?

I know that I will work for beans.

15 thoughts on “I’ve Moved to WORD PRESS!

  1. Your symptoms sound so much like my MS. especially the brain fog. I was having trouble with simple pattern repeats, names, words, so many things. The depression was very hard to get under control. I wish you the very best and hope you can get your symptoms under control.

  2. Oh Annie, hang in there! Acceptance is a bitch, isn’t it! We all know you’ll thrive, and your family is supporting you in ways unseen (right now). Think of those little beans pushing through the soil — they’re reaching for the sun, and so are you. One moment at a time.

  3. Annie, I think making a slip cover in a week would be remarkable much less in just ONE day. I cannot even fathom doing it in THREE hours!!! And all the wonderful designing you do and knitting…just maybe your brain is slowing down to “regular speed”??? Hang in there. Roz

  4. I’m writing to thank you for the free online knitting class. It was perfect because of being able to replay the videos. I know how to knit but am trying to learn your speedy method. I will definitely take another class from you because the way you explain things is really very clear to me.

    I have no fibro advice. I just know that taking care of others when you are not well,is the hardest thing in the world to do. For that you deserve a medal.

  5. Hi Annie,

    First of all, I wanted to tell you thanks. I was diagnosed with Fibro about a year and a half ago. Mine comes in flare ups and then disapears without much input or cause that I’ve been able to determine. The only thing I absolutely can count on is that if I have even one glass of wine or a beer, the next day I’m just down and out of it. Needless to say, I rarely drink alcohol.

    So, back to that thanks.

    You see, my partner didn’t get it. He just didn’t understand what I was saying or what I felt like. For the past two years I’ve pretty much not said anything or not complained about how I was feeling. I would gripe about being sore, but the intense pain was something I just didn’t talk about. I felt like “Its not cancer, so stop your complaining.” After I found your blog recently, I wrote about your fibro post in my blog and linked to it. I think that was a turning point for him. It was like another woman had it and this is her journey. I must have been an “A ha!” moment for him because since then, if I mention I’m not feeling well he is right there supporting me.

    I write this because I think there is a lesson here. So many of us suffer silently with fibro because its a rather new diagnosis. I felt like it wasn’t real or something and downplayed the real pain I was in. I don’t do that anymore. I listen to my body and I lie down when I’m tired. I recently joined a gym and plan on working myself as hard as I can on good days and resting on the bad. I refuse to let fibro dicatate or rule my life… but I also can balance that with gentleness and respect for my limits.

    So, that’s a long winded way to say thank you for sharing your journey. Your words are comforting to those of us with the same diagnosis. I won’t offer you medical advice or even a “You know what worked for me…” comment. You know what works for you and you will find your ways of coping the same as I did. I wish you good health and hope that the Spring’s warmth brings you comfort.

    Jennifer C

  6. Hi Annie:

    Some tinnitus has an autoimmune cause and can be treated, sometimes more successfully than others. I have it, as well as some other autoimmune problems, and my doctor has offered for me to try it. Right now I have most of the other things under control and it’s not bad enough to bother me so I haven’t pursued it and haven’t wanted to upset the delicately balanced apple cart of pharmacology. You might want to talk to your doc about it.

  7. Annie,
    I must admit I had not been reading many blogs lately. So I just discovered you are having such problems. I admire that you are still not allowing life to get you down and you continue to make beautiful things.
    Remember, its not a race to get things done. You do beautiful work. Take your time and enjoy being able to make things.
    Thank you for the tutorial on Combination Knitting. I had been told I was knitting wrong a few years back and had to reteach myself to knit “right”. Now I know why it seems I am knitting slower.
    Just know – you have a lot of fans out here who love your work. I look forward to meeting you this fall at a class if I can.

  8. Sorry this flareup has been a nasty one.

    Making a slipcover for a sofa in anything less than a week is amazing to me. I’ve had fabric for a chair slipcover for about 5 years, trying to work up the courage to even start.

    Hang in there, better days will return. I know it’s really hard to not think you can/should do everything you used to do, but it just adds to the stress when it turns out that you can’t. Doesn’t matter whether it’s due to health/age/work schedules/family demands. I should keep that in mind for myself also!

  9. My Sister in Fibromyalgia:

    I get it. I haven’t read your blog for a long time because my own Fibro is flaring so badly that it’s now caused reactive arthritis and I’m being started on a new experimental medication that will maybe address that and the two other severe autoimmune issues I face.

    I don’t have any advice; we all experience pain differently and life demands different things out of us. However, I do have a comment.

    You still have the drive to produce, even as you are not working at the speed that you want or on the projects that you might want to prioritize. To me, that’s a major victory. For in my world, there are two states of being. Able to ‘work’, albeit on the Fibro’s terms, or living death, laying around doing nothing. In fact, my doctors know that it’s time to panic when I tell them I can’t do anything anymore, and that’s how I’ve been started in this new protocol.

    Keep trying. Keep producing. It’s better than not. And overcoming the kind of obstacles that we both face down is a living legacy.

  10. Wow, I had not read your blog in months, but sat down and started reading and boy did it home with me. I have been battling fibro my a few years now. I don’t talk about it much with anyone, but my doctor, because most people don’t understand it. I have been taking care of my mother-in-law who is suffering from Alzheimer’s. I have had such bad flare ups that I cannot get out of bed some days! Sometimes, I wonder if I have something much more serious, but then it gets better and I get along okay until the next one. There are days when I cannot even pick up a knitting needle (we know those are bad days).

    You are doing so much for everyone, that I sometimes think fibro is just your body shutting down so you can rest!

    Take care and I will keep you in my thoughts!

  11. I’m not going to give you any advice about your fibro or anything else. I’m just going to say you are in my thoughts and prayers.

  12. Annie,
    I feel your pain because it is my pain also. I am just surviving the worst fibroflare of my life! At the risk of being repetitive, have you tried the Vitamin D for your pain. My doc says there is some evidence that some of our pain could be from a lack of Vitamin D. Cymbalta is also approved for nerve pain. Lyrica made me feel like I didn’t have fibro at all, until I couldn’t read aloud to my class.
    Martha Jones

  13. Martha – I’ve been doing massive doses of Vit D3 since I was diagnosed in December (I’ve written about it pretty extensively in my Jan blog posts, but haven’t mentioned it lately)

    It’s been like a miracle, and I’ve been convincing a lot of friends who AREN’T fibro sufferers to remember their vitamin D3 for energy and calcium absorption!

  14. Love to read your blog and enjoy having my brain grasp other ways of knitting.

    In reference to your brain fog, I recently watched an episode of Dr. Oz where a woman complained of some of your symptoms. Turned out she was eating too much fish that had mercury contamination. Her problems were alleviated when a doctor figured out the problem. Just a thought.

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