Finally Standing Up To Myself

So, after making a commitment to write every day, I didn’t post yesterday. I was hoping it wouldn’t be quite so soon before I broke my promise to myself, but I’m proud that I did.  It wasn’t due to lack of motivation, procrastination, or even because I was off having a fantastic time somewhere. No. Unfortunately, it was because of my old nemesis; an enemy that likes to regularly interfere with my plans. You see, I am chronically ill. My body wages war on itself. I have several autoimmune conditions, like a warped lottery list of free gifts you hope never to win: SLE (lupus), sjogrens, fibromyalgia, ME/CFS, vasculitis. There’s more, but that’s enough of a list for one post!

I try to live as normal a life as possible. Sometimes I manage, sometimes I don’t. In the past I’ve fought it. I’ve refused to give into my illness and rampaged through life, in denial and determined to show my body who’s boss. Touring the world for a year, working up to 16 hours a day, seven days a week, comes to mind as a clear example (and a VERY dumb thing to do!! OK doctors, you were right!). The problem with trying to outrun autoimmune conditions (or any chronic illness) and refusing to adjust your lifestyle, is that these behaviours can only have a limited time frame. And, if you’re as bloody stubborn as I have been, so can your life. A positive attitude is one thing, but denial is another.  The media is always throwing stories at us about ‘real life heroes’ who battle their illness and refuse to give up, but there’s a big difference between refusing to give up, and refusing to help yourself. I’ve never denied being ill, just that it effected me.

this isn't me, but it's an accurate impersonation!

this isn’t me, but it’s an accurate impersonation!

You see, in autoimmune conditions, the thing you’re battling is your own immune system. There are no invading cells to get rid of, no virus or bacteria to eradicate. Just a body fighting against its own cells. There’s no cure, just medications to ease symptoms, and lifestyle adjustments to try and be as healthy as you can be under the circumstances.  I’ll write more in the future, but for now if you’re not in the know about autoimmune conditions, just know this: they’re exhausting, debilitating, there are no cures, and they can be fatal. Oh and they suck. Big time!

I’ve always been VERY informed and knowledgable about my illness(es), and I’ve always advised others to take it easy and enjoy their life whilst still caring for their health. Seems I’m not so great at taking my own advice. My ambition and unwillingness to really admit the ramifications of my conditions to myself has seen me guzzling caffeine and pain relievers all day just to stay conscious and upright, making my husband carry me to my desk when I’ve been too weak to walk, and ‘soldiering’ through when I could barely see, hear, talk, walk, and had absolutely no chance of getting an intelligent thought out of my addled brain. I am one stubborn idiot sometimes.

I have crashed before. Like a lead balloon. Unable to work. Unable to look after myself. Stuck in hospital. Living below the poverty line with no income. But historically, as soon as I’ve started to recover, my denial has kicked in and I’ve decided, “That’s it! Back to the real world”. At the start of last year I crashed again (though I’m surprised I lasted as long as I did). I’m finally recovering. But this time I’m determined to change my lifestyle, to actually start looking after myself properly. Does that mean I’m giving up, giving in? Hell no! It means I’m more determined than ever to stick around and enjoy my life. You see, I’ve finally realised something. Each time I crash, it’s worse than the last time. Each time I recover, it’s not to the same extent. I’ve made myself worse by refusing to learn to live WITH autoimmune conditions, rather than AGAINST them. And there’s a very real possibility I’ve shortened my life as a result. That’s a hard pill to swallow, but finally I’ve had to.

So last night I was tired. Chronic illness tired is like normal tired on speed. Or valium? (what I’m trying to say is it’s a hundred times worse, but because that means it actually slows you down more I’m not sure speed is the right analogy. Hmm, let’s just go with ‘it’s a lot worse’). I wasn’t ready to collapse into bed just yet though. I was able to go hunting and gathering (ahem, grocery shopping). I was still able to clean the kitchen after the beautiful dinner Mr Raw made. I was still able to spend quality time with my 16 year old dog. I was still able to knock up a quick, raw, healthy, delicious cake for us to snack on for the next few days. But then I needed to stop. I couldn’t think very well. I had a shocking headache. I was exhausted. I needed to go to bed. So I did. In the past I would’ve pushed on regardless because I ‘should’. (I ‘should’ on myself a lot – say it aloud). But last night I went to bed. And believe it or not, that’s an enormous step in my personal development.

But, it’s never that easy with autoimmune…..

image credit Cyanide and Happiness

image credit Cyanide and Happiness

Insomnia is a bastard that I hang out with. A lot. A LOT. Did I mention, A LOT!!!  A lot of people with autoimmune conditions do. So tired you can’t sleep. Sometimes life’s one twisted prankster. But at least I went to bed!

Unless otherwise acknowledged, all word and images by me. All material © Raw Once More 2013


About Raw Once More

Recovering workaholic chronically ill perfectionist starting all over again (again!). After a crazy life (including running away with the circus), I'm learning to stay still and journeying towards health, happiness, and wholeness, by nourishing myself and the Earth. Interested in frugality, simplicity, creativity, sustainability, myo/diy, and living healthily with autoimmune disease.

Posted on April 25, 2013, in Living With Autoimmune Conditions, My Crazy Life, Relax! and tagged , , , , , , , , , , . Bookmark the permalink. 2 Comments.

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