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Today I Am Sloth. With Chocolate. And Wine

Three legged Lupie

Today…

I am Sloth.

I am walking with three legs, though one barely moves, and one is metallic.

I dress in grey clothes unsuitable for public eyes.I soak in their warmth and lack of expectations.

I am lupie, as only other Lupies would understand.

I do not welcome Lupus, yet it insists on staying like the smelly squatter on the couch who just.will.NOT.go. No matter how many hints I leave.

I am sad, depressed, but not in the darkness of the past. Just dealing with a day that is best forgotten.

I am hormonal. This was not a good time for a monthly visitor to join the frequent flyer on the couch!

I am not myself. I am no one today. I am just… in limbo, waiting for less pain. Less, just less.

I have a high pain threshold after so many years, but today I am crying. It is too much. I am battle-weary.

I am dark chocolate with sea salt and red wine. It makes things more… bearable.

I have a long To-Do list, but my brain and body yell, “no!”

I am full of self-pity. I do not like to be. I think sometimes it is necessary.

I feel I am achieving nil. I feel disheartened. I write to remind myself of the year to date. The effort exhausts me.

I am reminiscing of a life before lupus. But do I remember? Did I have one at all?

I ask myself permission to stop. To do nothing, to rest. I readily agree. Today my brain offers no arguments.

I am not brave. I am a coward today. I fear. I cry. I question.

I dream of travelling again to faraway lands. I wonder if I ever will.

I lay. I do not sleep. I toss, I turn, I hug my iPad and its connection to The World.

I speak on the phone to a friend, but his words confuse me. My brain has no reception. Too much interference.

I am not writing the post I thought I would. Instead I am massaging my body with key strokes, quick, but gentle. Always gently.

I wait for my love to come home. To fill the house with light for I have none. But he is also tired.

I close today with hope that tomorrow brings more light. More, just more.

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Crazy Things I Do When Insomnia Strikes

I’ve written before about being an insomniac. Insomni-maniac is probably closer to the truth. If there’s anyone out there not sleeping like crazy, it’s usually me.

Photo credit: Nizaad

Photo credit: Nizaad

There’s a number of reasons:

  • My autoimmune conditions can have insomnia as a bonus
  • Most of my medications for aforementioned conditions come with built-in insomnia
  • I’ve had depression on and off for a lot of my life, but have had a very bad episode for the last fifteen months: depression causes insomnia
  • I keep replaying events and conversations in my head at bed time which one day I’m just going to have to finally deal with
  • And finally, that Type A, achievement-driven, million ideas per second, perfectionist personality of mine that I’m trying to control. It likes to spend bedtime planning, evaluating, regrouping, debriefing.

So all in all, sleep is like an exotic destination I dream of visiting one day, and no matter how much work I do to try to get there, I just don’t seem to mange it. Except at about 7 am. I can sleep through the days like a champion, but unfortunately society at large doesn’t really cater for people who function that way. And what makes it more frustrating is that Mr Raw could win gold in the Sleep Olympics – he’s asleep as soon as his head hits the pillow. Or even beforehand.

As I found myself getting up to my usual crazy insomniac antics at 4am I decided to keep a list of them: Read the rest of this entry

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!

Read the rest of this entry