To be a spoonie

Today is a rough day. My head is throbbing. My joints ache. My skin is on fire. I’m utterly exhausted, and just the thought of doing something so strenuous as walking to the bathroom makes me want to cry. I refuse to give into this though. I went to a movie with my partner today, and I’m going to cook dinner tonight. I took a shower, and got dressed. I used up all my spoons just getting out of bed this morning. I’m owe my body so much right now that I don’t even want to think about it, so I’m not going to.

I think most people, however sympathetic they may be to a person with a chronic pain disorder, can’t even begin to grasp what it’s like to truly live with one. I saw a post on Twitter the other day about being a “spoonie”, and was mysitifed, so I set about with my Google-Fu to discover what this “spoonie-ism” was. I found it. It’s a brilliant explanation by one woman who lives with Lupus, among other things, to one of her oldest friends, on what it is like to live with this. It’s a great metaphor, and you can read it here. We call ourselves “spoonies”.

My life is like that. Every day, every moment really, is a constant evaluation of how many spoons I still have left for the day… and often of how many I owe. Life doesn’t always allow for me to finish the day with a positive, or even, balance. Most days, I owe spoons. Lately, I think my body has decided to start collecting on the spoons I owe it.

I’ve been working, for what feels like forever, but has been about a month, with a headache that just won’t quit. Nothing is stopping it. There was even a trip to the ER, with a well meaning but mostly useless doctor, but it all has been to no avail. It won’t stop. I’ve gotten breaks here and there, but never for long. I think the longest I’ve gone without this headache has been 45 glorious minutes. Aside from the headache, my fibro has flared with a vengeance. Today, the pain isn’t too horrid, but it’s been about a month now that this flare has been ongoing, and I’m beginning to lose the memory of what it was like to have my pain at a less-noticeable level, where I could still function and work without having to stop to catch my breath regulalry.

I do get the “but you don’t look sick” look from people. They look at me, and I can see the doubt, the skepticism in their eyes. I can understand that. I appear healthy. I am slender, and fairly fit. My colour is good, and I appear to have energy. I think there are a very, very few people who understand just how exhausted I really am, or how much pain I’m actually in. Happily, all of those people understand that I don’t want to be treated like an invalid, nor do I want to be asked a million times if I’m ok. I’m not ok. I’m very rarely ok. However, as I live with a disease that most of the medical community doesn’t even acknowledge truly exists, my state of “ok-ness” doesn’t really matter.

It’s frustrating to have to try to figure out how much of my medical history to tell a doctor. To have to feel them out, to decide if they are receptive to fibro as a legitimate diagnoses. The ones that aren’t inevitably want to tell me it’s all in my head, that I’m somatising, that it’s a psychiatric disorder. The ones that are usually want to put me on a medication that I, lacking any form of insurance whatsoever, can’t afford. It’s a lose-lose situation, one that I think most spoonies have to deal with.

So, we go on. Day by day, minute by minute, we live our lives. No, we don’t look sick, because, well, we’re not. I’m not sick. I am, however, in pain and exhausted beyond belief, most days. I truly cannot remember the last time I had a full 24 hours without pain. I cannot remember the last time I truly felt well-rested. This isn’t meant to draw sympathy or anything like that. I don’t want or need anyone’s pity. This blogging, this posting, it’s a way to cope. A way to vent the frustration, the anger, the irritation- at an enemy that doesn’t care, can’t hear, and is ruthlessly vicious.

May is Fibromyalgia Awareness Month. Seems we’ve a month for every kind of awareness there is. Probably not a bad idea. I don’t know how much use it actually holds, but well, it’s a start, I suppose. So, this post is my contribution to this effort. So, to all my fellow spoonies out there, near or far, hang in there. Enjoy the good days for all their worth, and squeeze every precious moment out of them. Let the bad days go as much as you can, and don’t ever, ever, ever let them win. Acknowledge the pain, the exhaustiong, the depression, and then move on. Find your serenity somewhere, and cling to it. There will be a silver lining to the dark days. The sun will come out again. Bask in it when it does, and hold onto it for when the dark days come again. I think the upside to being a spoonie is this: We appreciate the sun like no-one else can, for we know its worth, and pay for it so much more dearly than others.

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~ by Kelly on May 6, 2011.

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