Thursday, September 20, 2012

I need more spoons

I've been having a hard time lately, there's a lot on my plate. A friend pointed that out to me tonight and I noted that I needed more spoons. She laughed but I realized she had no idea what I really meant by that. Then I realized that many don't, because I had forgotten to share the story behind it with most people. (I posted it on my Facebook when I first learned of it and meant to blog about it and then just never did)

It's hard to explain to people what life is like living with a chronic illness. It's even harder to hear again and again that "you don't look sick." Awhile back I learned of a website called ButYouDontLookSick.com. It has been a great resource in finding people with similar experiences to mine and hearing their struggles and triumphs. I have also been able to recommend it to people I've encountered in my everyday life who also have chronic illnesses, which often helps me with my own strife. If what I'm going through can help me reach out and help another person, it's easier for me to get through it. I don't know if I'd go so far as to say it makes it worth it, but it certainly makes it better.

On 'But You Don't Look Sick' I found the best description of living with a chronic illness that I've ever heard called The Spoon Theory. Please click that link and read it.

I have to plan my days. If I have Physical Torture in the morning, I can't do anything that night. If I stay out past 10pm, the following day I have to stay in bed late and go to bed early. Taking a shower is exhausting. Going to the grocery store is a beating. Being around people for too long is draining. If I don't plan my spoon allotment right one day, I may be in bed for two or three afterwards in order to recover. (Or like after the Emmys, a week) Sometimes I forget to keep an extra in my back pocket. I often run out before the day is over and I almost never have any left over when I go to bed. Most of the time it's a gamble.

Lately, I'm finding myself starting each day with less spoons than I used to. I think this is a combination of side effects from my medication, the medication working so that my body is fighting hard to kill the fungus, not having my blood filtered as often, physical pain and soreness from walking on my own, financial stressors, traveling too much, and working too much.

I'm currently making drastic changes in my life to ensure that I don't keep running out of spoons. This takes some strategics because making those changes requires a lot of spoons, but, slowly, I'm hopefully spooning my way towards better health.

If I don't respond to your text, email, message, etc. for a few days or at all, or if I don't come to your event, or I'm late, or cancel on you (I hate to and try really hard not to!), hopefully now you know it is because I just didn't have enough spoons that day. I'm working on getting more, so that I can do and see and be all the things that I want to.

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