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Day 33 - The Sarah Project

Sunday, May 03, 2015

I want to post a blog every day. I really do. But sometimes I just can't.

I read a great blog a couple of week ago about how one lady explains how Lupus makes her feel to her best friend. Here's a link to it:


Basically it says that spoons are the currency of sorts in order to accomplish anything you have to do in a day. You only have a limited number for the day and you cannot save any from yesterday. If you go over your spoons, you may very well end up borrowing from tomorrow.

So each task costs you a number of spoons. It gets complicated because taking a shower may have cost 1 spoon today, but could cost 3 tomorrow, and you don't know until you get there.

This is probably the most frustrating thing to deal with for me. I have always been one to push through the fatigue and pain; to keep moving and accomplish my tasks and goals, no matter the cost. Well, it turns out the cost is very high. I spent years before my diagnosis living my life at a very fast pace, burning the candle at both ends. I beat myself up for being lazy and unmotivated when I was fatigued and feeling sick. I pushed on anyway.

In 4 years, I was admitted to the hospital 6 times. Two were after outpatient surgeries that I did not spring back from as anticipated, but the other 4 were because my body just quit.

The first time I was on the verge of liver and kidney failure - I had pancrititis. That trip ended with having my gall bladder removed. The next time I stressed myself to the point where my immune system was shot, and bad bacteria took over my digestive system. Trip 3 was for what my doctor thought was stomach ulcers, but turned out to be bile reflux - a known issue after gall bladder removal but aggravated by stress and fatigue. The last time, my liver was shutting down with no explanation why.

That fourth time they tested me for every single thing they could draw blood for. It also included several CT scans, and MRIs. That time, my ANA levels were as high as they can test for and the pattern? Even though my hubs loves to quote House "It's NEVER Lupus!", it's Lupus. The doctors still aren't sure exactly what the cause of my liver distress (and constant vomiting, and pain, and headaches) was, but a week in the hospital on massive antibiotics and pain meds, and my liver function was returning to normal.

So, why am I telling you all this story? Because it highlights my biggest hurdle. I still beat myself up for being lazy and unmotivated simply because I have run out of spoons. Even my family is better about it than me. My hubs will say "Can we do such-and-such tomorrow if you have enough spoons?" My mom will push to make sure that I am not too tired (although, sometimes I still say I'm ok when I shouldn't).

I still beat myself up for being lazy and unmotivated. And how do I punish myself? I eat. How do I alleviate the pain, when the meds don't? I eat. How do I deal with the fatigue when I can't lay down and take a nap? I eat.

Does it work? HELL NO! It doesn't work, it just makes me feel good for about 5 minutes, and then the guilt sets in and I feel worse.

I know the key to this whole thing is to stop. Stop beating myself up. Stop self medicating with food. Stop the guilt merry-go-round that I've been on for more than 20 years.

So that's my goal for May. To stop. When ever I feel like eating to push down the pain, I will stop. Whenever I feel guilty, I will stop. When ever I start to beat myself up, I will stop.

I am determined to break this cycle of binge eating to self medicate. The only way past is though, so that is my path.

My husband doesn't understand why I feel compelled to share my struggles with "strangers." I've tried to explain to him the difference between his support (an outsider's view) and the support of though who have been in my shoes. I do not do it adequately. I feel blessed to have found a community where I can share - so thank you all for letting me do that.

Days 30 - 33? D.O.N.E. well almost :)
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Member Comments About This Blog Post
  • MSHEL7
    I think Adakara has a wonderful idea in the yoga and meditation. My grand father had Lupus, I've been checked for lupus. I'm sorry you have it. I hope you can find something that works better for you than eating-although, that is usually my go to for everything, just like you. Never heard the spoons thing before, but I like it.
    1905 days ago
  • no profile photo CD14895051
    Doing what you need to do for yourself needs no defense yet I frequently feel like I need to defend myself when my psoriatic arthritis gets me down for a day or two. Weight loss (and the healthy habits that lead to weight loss) is very beneficial for my condition too. There are a lot of reasons to become and stay at a healthy weight!
    1927 days ago
    I don't have lupus, but I can understand how it could affect every day life and how you don't know until you get there how much a task will cost you. You know what you need to work on, and you can do it! It's all a process though, just like losing the weight is. Each little bit adds up. You may slip up or you may battle with beating yourself up on a daily basis, but the more you work on it, the better it will get. Not necessarily easy/easier, but better and more like a habit. emoticon
    1927 days ago

    Comment edited on: 5/3/2015 10:09:22 PM
    I think the spoon metaphor is a good way to explain it. It must be really really hard to try to fit in all the facets of life when you know you don't have enough spoons, and even harder when the same thing doesn't take the same amount of spoons every day.

    I'm sure it also complicates matters that you get down on yourself about the things you can't do. I know me saying "stop that!" doesn't help, but... Stop that! I know it's easier said than done, but be gentle with yourself.

    And ask for trying to fix all your problems by eating, yeah, I do the same thing and have yet to figure out the solution to that.

    1927 days ago
    I don't have lupus, but I do understand self medicating with food to not feel so fatigued and get a little energy. When I was at my heaviest at 256 lbs. I was fat bound and couldn't move to fast. I really wasn't eating that many calories and I had undiagnosed low thyroid at the time. I just wasn't burning many calories.

    For you, it must be a terrible struggle. How are you supposed to lose weight while limiting your calories and limiting physical activity? How are you supposed to get energy? I get to ride my bicycle everywhere that makes me feel really good.

    Wow! This isn't right. Please take care and don't be so hard on yourself.
    1927 days ago
    I was diagnosed with SLE Lupus in 2003. Thank God my symptoms are minimal but I do struggle with fatigue and joint pain. I believe weight loss is beneficial to Lupus because it will prevent the stress on my joints. I hope your health stays positive!
    1927 days ago
    My FIL had lupus, but as his English was not great we never talked about it. I've read the spoon metaphor before though, and I can only imagine how hard it must be. What I do know is that sharing is therapeutic for me. I feel better when I share. I'm very open about most things. And SparkPeople is one of those places where you can share as much as you wish and not be judged! I've never been yelled at for not talking about weight loss. Mental health has a lot to do with the process though, so I guess it all fits in somewhere!

    I don't really have any advice on how to deal with things except to suggest that you might try to replace eating as a soothing mechanism with something like meditation or gentle yoga. emoticon emoticon
    1927 days ago
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