Spoon Lady Speaks...

Christine, I do the same thing all the time. Sometimes there is something so special, so important to me, that I will overdo it in a huge way knowing I will "pay" later. Sometimes the price is huge - like a week in my chair with my back or knee on ice. This happened when my sister and mom and daughter all came down at the same time for Labor Day. It was my sister and mom's first visit to my new home and I had to do a tremendous amount of leftover unpacking, cleaning, and other major stuff to get guest rooms ready for them to stay in, etc. I cooked up a storm. Then my mom stayed here for a month afterward. It was such a huge, special thing to me having them here that I was willing to do anything to make it wonderful for them. Was I physically shot? For sure. Was it worth it? OH yeah. Absolutely.

I hope you took lots of photos of your pretty cookies so that you can put them in your baby's scrapbook someday.

All your spoons SHOULD be going to your baby girl except just one - that one is for you. You don't have to use it every day, but now and then you need a special treat just for you. If you don't take care of you, you can't take care of her. I'm sure you've heard that repeatedly from others already:)

Right now is a special and unrepeatable time with your daughter. ENJOY it for all it's worth - it flies so quickly and then you have a little 20 year old baby girl moving into her first new apartment like I do this week:)

HUGS,
Sheila

Hi Christine! I certainly know what it feels like to not have any spoons left. I've had to leave school, and lately I've been pushing all my spoons into the rare times I can see my boyfriend. Sometimes it makes me so upset--i had a year or two when I was healthy, and I remember doing SO MUCH. I think it's especially hard because there's so much pressure at my university (I go to Princeton), and a lot of professors-and students--can be less than understanding about anything below perfection. I've been wondering if I should even go back, but I desperately want to do my senior thesis with Joyce Carol Oates, (she, btw, is incredibly understanding), which I feel like would make all that pushing myself I've done for the past three years worth it.
I did have a really wonderful day with my boyfriend last week, and he said some truly wonderful things that have really kept me going: "you have chronic illness--you can do ANYTHING," that he was excited that his friend was dating a girl who's chronically ill b/c he thinks that's she's "like (me)," and that all this week as he's been in California competing in a challenge for the defense department, that he keeps on seeing the last image he saw of me as he left, "looking very tired but very very beautiful" (I now know I was starting a bad allergic reaction to meds at the time). I really feel that pushing myself to see him (I got dressed up and went out to Halloween parties with him and then stayed up late watching movies and having a good cuddle, which is more than I've done in the past month combined, I think) was worth it, even if it did probably help push the allergic rxn, and what he's said has made me very proud of what I HAVE been able to do, even if it doesn't always seem like so much.
I guess I'm trying to say that even when you feel like it's so frustrating that you can't do everything you wish you could, there is still SO MUCH that you do accomplish, and so much that you do for others that you're not even aware of. All of my friends, my family, my bf, know about the "spoon lady" and what a huge difference you've made in my life!
thanks for starting this blog, but...could you make the text a bit bigger? I don't see very well, so I'm havign a really hard time reading it, and I'd love to be able to read it all! (:
Hugs and spoons, Elizabeth

I couldn't have found this blog at a more opportune time. I am a lurker on BYDLS facebook, but for the most part, my extreme shyness keeps me from much posting. But I take solace and encouragement in reading about others who can empathize.

Your blog hits the spot. I have fibromyalgia and have had it since I was 10, with symptoms for most of my life. "Normal life" doesn't even register with me because to me a lot of this stuff is normal. Mentally I know what I can and can't handle. Stubbornness or just a sporadic desire to do something might give way for me to do more than I should to meet a goal or something, but for the most part, I know my limits.

But now I have a son. He just turned 1 in October and my life revolves around him. My dreams have just begun to be fulfilled by having him in my life. I love him in such a way that I can't describe. Even with a wonderful support system around (husband and local family), I try to be the Mommy because that's the way I envision it should be. When I was in so much pain from the delivery, I insisted on walking him around to soothe his tears. As he got older, and heavier, I insisted on taking him upstairs to naps, even though I could barely walk. It's such a battle between desire to do what I want and need to as a mother and what I should do to protect my health. And that battle is raging so much in me right now. Every ounce of energy, plus infinite more, go to him. And that's how my mind wants it to be, but my body disagrees. As a determined girl, my mind often wins out, which means my body loses.

Thank you for sharing what it's like. And thank you for helping me understand that this fight to be superwoman, in what others would consider normal tasks but are mountainous to us, is felt by others.

1) I think this is an issue to some extent with almost every woman and mother, whether they're healthy or not.
I had two babies before I had Lupus, and I always had issues with trying to want to "do it all" or feeling embarrassed I wasn't doing enough, or that everyone's doing better than me. In a way, Lupus was a little good in that it forced me to say, "I'm not even going to try doing that, and that's too damn bad!"

2) You're pretty young, right? I was 37 when I was diagnosed. I feel like being older makes it easier to "allow" yourself to ask guests to please bring something, using paper plates, etc.

When my 3rd child was baptised, I had been in ICU two months earlier, and a regular hospital room one month earlier. Relatives brought all the food for the reception and did just about everything, and I DID NOT CARE or feel bad about it!! That would have been harder if I was younger or even if it was my first baby.

You just can't do it all! That is just a fact of Lupus life. I am a high school teacher at an inner city school and you wouldn't believe how many spoons they take. I work for the weekend just so I can rest to make it to Monday to do it all over again. I LOVE my students and want to do special things for them and I get depressed when I can't. This in turns makes me anxious and causes nausea to the point I can not function without vomitting. Of course, this makes me more depressed which makes the sickness worse...well, you know the cycle. Sometimes you just have to say NO, which is still hard for me to do when it comes to my students and family. You are not Superwoman and don't feel bad about that - she isn't real. By the way, thanks for the spoon theory. I read your story to all of my students and now when one of them gets on my last nerve, one of the other students will say "sit down and shut up! (or correct whatever they are doning wrong) You are taking her spoons!"