I really and truly hate feeling like an invalid. I do everything I can to keep up the appearance that I'm a vital, active woman who can do anything she pleases--like crawl around on the floor basting a quilt. (Won't do that again.)
I walk the dogs every day, weather permitting, even though sometimes I feel like I'm going to have to call 911 before I get back home.
I sign up for quilting retreats and Bible study retreats when I know in my heart that I probably won't be up for them when the time comes. I promise to make quilts and food for friends and church when I know how iffy a proposition it is for me to promise to do anything. Sometimes I have to beg off, but not often. A promise is a sacred thing to me. I don't like breaking them.
I so want to be the person I was a few years ago, but I'm afraid that's not going to happen. When I was first diagnosed with this fibro-freakin-myalgia crap, lots of people, including some doctors, told me that the symptoms tend to get better over time. NOT! Mine have only got worse. Much worse. Age probably has something to do with it too, as I have aged eight years since being diagnosed. And rainy, drab, cold days (like yesterday and today) are particularly bad. These are the kinds of days I used to enjoy most--snuggled up with a cup of tea reading a good book made for such a cozy feeling. But it's hard to feel cozy when your muscles and joints are screaming.
Fibro has taken a lot from me, even if it has had to pry it out of my clenched fingers. I rarely go out at night anymore; by the time nighttime comes, I usually have no spoons left at all. I miss out on a lot of socializing with friends, and I hate that. And for some reason, that makes me feel guilty. Like I've become my old bed-ridden great aunt, whom we always thought was a malingerer who just wanted to lie in bed, read mystery novels, and let her husband take care of her. She probably had fibromyalgia in the days before anyone knew what it was.
Have you heard enough of my whining yet? Sorry for all that. Sometimes I just have to let it all out. This condition makes me so angry. But I know I should be grateful, AND I AM, that what I have is not terminal, and that I have so many blessings to be thanksful for. And aways I try to remember this: I'm not my disease (or syndrome or whatever). I'm still me.
I got most of the Teddy Bear quilt bound yesterday before my hands stopped working entirely. I think I can finish it today. Then I'm hoping to make a pan of tetrazzini out of the last of the turkey leftovers. But first, a shower is in order. I haven't washed my hair in three days. It might not get blow dried, but at least it'll be clean.
This post was migrated from the old blog. To see the comments on the original post, CLICK HERE. To add a new comment, click "Post a Comment", below.
On 11/30/2010, Linda said ...
It sounds awful! I am so sorry! My cousin suffers from Fibro as well. She has since her early thirties and it's just terrible. There are weeks when she uses a cane and she's only 38. Awful. You have a wonderful, positive attitude!!
On 11/30/2010, Sharmayn said ...
Oh Susan, you have permission to have some wimpy days. :D I can only imagine what it is like to be forced to slow down by a body in rebellion... (Well, I can do more than imagine, I just don't have any actual experience with this particular disorder.:p)
You know you are not your bed ridden great aunt, LOL!!! You are still a vibrant, multi-talented woman whose gift of words is not only therapeutic but comedic, even when discussing the sadder issues of life... Keep on keeping on Ladybug! Love you!
On 11/30/2010, Helen in Switzerland said ...
Susan if you can't speak your mind here, where can you? Don't forget that you are also informing your readers about this condition - I for one didn't know anything about it before I started reading your blog - and that is a good thing. It seems to me that you manage to do more for other people than most fit and healthy people do. Don't feel guilty- take care of yourself when you need to. I'll let you into a secret - I'm a little younger than you and fit and healthy and I don't go out in the evenings if I can help it - no energy left by then and it's so nice to stay home! Take care my dear - and don't feel guilty - we're on your side!!
On 11/30/2010, Kai said ...
I kept reading, all the time thinking, "I could have WRITTEN this post!" I feel EXACTLY like you do, Susan! But we aren't quitters, you & I, and so we keep doing as much as we CAN do (and often more than we SHOULD do.) And the one thing I MOST want to say is this: You are allowed to fuss about Fibro or anything ELSE that needs fussing about. I'm betting I speak for ALL your online friends when I say we LOVE you & are here to listen & sympathize & WISH we could make you feel better! LOVE YOU!!!!
On 11/30/2010, CarlaHR said ...
Susan, I can't tell you how grateful I am to be as healthy as I am. When I read your post I realize that my little aches and pains are just that - l i t t l e. I don't know how (and hope that I never do) I could cope with a condition such as yours. I, and so many of your loyal readers, admire what you do accomplish despite the limitations that your body forces on you. So if you feel like "whining" feel free to do so - this is your blog after all. As for going out in the evening I rarely do so - after a full day it is nice to relax at home. My prescription to you is to do what you can when you can and don't worry about the rest.
On 11/30/2010, Mama Pea said ...
Hang in there. I know this is a terrible illness. You really do quite well! I am so sorry you are in such pain.
On 11/30/2010, Barbara Anne said ...
Hey, honeybunch! I hear you. I well remember when my spoon drawer was full and I was almost like the energizer bunny. Those days are gone, for sure, and it's a never ending bummer when you stop and think about it. Some days the limitations are so in your face that you cannot ignore them and carry on. Sorry you're having a couple of those spoonless-hit-the-wall days.
As others have said, please say anything and everything you want to say, choose to say, or need to say.
Remember, you didn't choose this so you have absolutely nothing to feel guilty about. Say this as often as you need to.
Big hugs and love - Barbara
On 11/30/2010, Joanne Cage said ...
You ain't no wimp! That Thanksgiving feast you threw was the work of an artist, and I don't know how you managed it all. Just look at your gorgeous house which you redecorated this year! I'm only 9 or 10 years older than you, and I can't do half that much--just because I'm too lazy! Love you, Suze!
On 11/30/2010, Linda said ...
You have my ear whenever you need to talk/whine/rant/whatever. Wimpy, you are not! I admire that you do not let the disease get the best of you. When you need to, you rest; and then get on with it. As someone else said, you are informing and setting the example for your readers as your share your life with us. That is invaluable. Thank you, Susan.
On 11/30/2010, Brenda Kula said ...
I can commiserate. I had such a bad back that I was on crutches or using a cane at age 30. Now I do yoga twice a day, stretching for about 30 minutes each. Has saved my life! I get around better now at 53 than I ever did. I also take Cymbalta, which probably helps some with the pain. That's why I don't crawl around on the floor doing quilts any more. I just can't do it. I don't make plans anymore much. I've never been a social creature. Even stopped doing Meals On Wheels because I didn't know how I'd feel. It's good to vent. Get it out.
Brenda
On 12/01/2010, AnnieO said ...
Your title should be banished--you are not a wimp! Fibromyalgia is a difficult disease to treat and even more difficult to live with. We have lots of fibro patients at our pain clinic. Some are tremendously helped by medications, others not. It is hit and miss. I know you try to do the very limit and use up all your spoons often. It is a real bummer to have to let this condition take up space in your life! Pressing on and doing things you enjoy despite the pain takes real strength and energy. I hope you feel some of that come back soon.
On 12/01/2010, Emma said ...
Your post made me kind of laugh which sounds awful but...hear me out. I got sick this week (husband gave me a stomach bug...what love!) and what did I do on my day off? I made (to include ironing) binding for a quilt, machine-sewed that binding onto a quilt, cut and ironed and pieced a backing, basted the quilt onto that backing, started quilting that newly-basted quilt, and started hand-sewing the binding down onto the recently bound quilt. On a day when I had a stomach bug and wasn't allowed to eat any food, just drink water and some Fanta. My husband was astounded that I did that much because he just laid around under blankets when he had the same bug.
On 12/01/2010, Sylvia Weitzel said ...
Fellow wimp here. Vent all you want. It isn't easy living with this disease. I have aged a lot these past 3 years when it's gotten worse. So hard to be always in pain. Soft hugs, love and prayers sent your way...and also spoons!
On 12/01/2010, Ruth said ...
Susan you're not a wimp, you just don't feel well. I always like the saying "Getting old is not for sissies" how true! But we soldier on. Look at what you've achieved this year, even the last few weeks, entertaining your family to a lavish feast. You've given a homeless dog a loving home not to mention all the Yellow House make-over. Now your body needs a rest and its perfectly alright to give in to that .
Keep cozy.
Hugs Ruth
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