I haven't written a blog post about my chronic illness before, but as it is currently kicking my ass, it seemed to be a fitting a time as any to write about it!
This is the 'me' I typically present on the internet.
Super chirpy, very smiley. This is my ideal me. I try my best to be happy as much as I can, and even the customers at my day job would probably describe me as chirpy, but unfortunately this isn't the me that I always am. Sometimes, I look more like this....
Tired, kinda vacant eyed, rocking some heavy duty eye bags and my curly hair is all drooped. I look all sorts of wonky and worn out.
And the reason I look like this, and believe me, I feel much worse than I look, is because of chronic pain. I suffer from chronic atypical headaches and chronic migraines with aura. My headaches are called atypical because they don't follow normal patterns. They are atypical because they literally never, ever, go away. There is not a moment I am not in pain, even while I sleep. My scalp hurts, my jaw hurts, my cheekbones hurt, the bridge of my nose hurts, my forehead hurts, my teeth hurt. 24/7. Experiencing a migraine with aura, is basically like suffering a stroke, without the permanent brain damage. The side of my face droops, one side of body goes totally numb, I become confused, I can't speak properly because even my tongue is numb on one side, I know what I want to say, but cannot make my mouth say it, and then afterwards, the pain and exhaustion.
There are various things that trigger my pain, or exacerbate it. I can't wear glasses or sunglasses for any real length of time, I can't wear my hair up, I no longer dye my hair because having to pin my hair up is painful, I wash my hair twice a week at the very most, I need to sleep for at least 8 hours a night, bright sunshine hurts, the heat hurts, hats and hair accessories hurt, carrying heavy things on my back hurts, brushing my hair hurts, there are times that it is agony to even lie on my pillow and I make a weird little fort to prop myself up so I don't have to touch my head to my pillow. I wear a gum shield at night because the pain makes me grind my teeth, brushing my teeth hurts, chewing hard food hurts.
I used to fear that being ill would make me be alone, that no one could possibly love someone who could be such a burden. And I was so wrong. I have a fiance who looks after me when I'm ill, who understands when I have to leave nights out, or cancel plans. I have friends who understand, who text me to ask how I am, or who just seem to know that I'm not my usual version of 100%.
Because well, when you are in pain all the time, you have your own version of 100%. My version usually means I'm at about a 3 or 4 on the pain scale. A 3 I can work with. A 3 I can ignore to a large extent. A 3 means I can go to work, maybe go out in the evening even, provided I am home and in bed by 11 at the latest. Today I've been a 7. That means I'm distracted. I can't keep my thoughts focused, I've eaten only soft food, I visibly flinch when the pain surges, I don't want to be touched, my hair just hangs down, having the molars in my lower jaw removed seems like an excellent move right now, my scalp feels like electricity if I touch it, I'm exhausted, even frowning hurts my face.
Every day is different. I've taken so many different types of medication, that I have literally run out of options now. It's been 6 years, and I have just been referred to botox, which I think is my last remaining option without more drastic surgical options.
So fingers crossed, for more spoons for all those other lovelies out there suffering with chronic illness, and for less pain for us all. I feel for you, because so much of our time is spent fighting and trying to prove that we are ill and it isn't in our heads, and pushing to make doctors do something about it. I've met so many brave amazing spoonies since my illness started, and I am so so lucky.
Got any questions for me? Feel free to ask away!
Much love,
Kitty xxxx
Comments