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 :)