I could spend this whole blog post apologizing for the fact that I haven’t posted anything in almost a year. I could fixate on the fact that my last two posts were basically me apologizing for my absence as my posting was pretty staggered to begin with. I could apologize, and I will, because I am sorry. But I also want to touch on a huge part of being chronically ill; the fact that we can rarely, if ever, make promises.
Symptom 1 and Symptom 2,
This one’s old, that one’s new.
I thought my body was mine to rule
But it looks like I’m again the fool.
One thing goes wrong after another,
And I’m left attached, feeling smothered.
Brought to my knees again tonight,
Crying, aching, giving up the fight.
If I could sleep it might improve,
But late at night I cannot snooze.
Spoonie life is hard to take,
I may bend but I’ll never break.
ps- whoever’s photo I am using as the feature photo please let me know if you see this so I can give credit!
I know I’m in pain, but you might have it worse.
I can writhe and close my eyes, but you have to watch it.
You glance over helpless or turn your head away, because this is something you can’t fix.
I’m not the girl you fell in love with, I may be a wreck now but you married me healthy.
If you want to leave, you’re not letting it show.
Instead you gather my meds and bring me to the doctors.
Trying to help the only ways you know how, and it’s everything to me.
I toss and turn all night, thrashing around in pain.
I may be keeping you awake as pain steals sleep from us both.
You may have it worse. Helpless, hopeless.
Pain demeans us both, in different ways.
I don’t know how you deal with this.
Watching your loved one suffer and fade away.
I’m half the girl I used to be, and you’re twice the man I could have ever hoped for.
We all have them. It’s okay to admit that.
For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.
I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?
This is it. I’m going to die. This pain has to mean I’m dying.
How is this amount of pain even possible?
This is it. This is my life now.
How many heating pads can I have on how many body parts at once?
Am I maxed out of meds now? Or can I take more?
My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.
I feel like my teddy bear is the only one who gets me.
I can no longer cry. My eyes are swollen and I have no more tears left.
When was the last time I showered?
I’m not going to shower today.
I don’t remember what outside looks like.
There is an outside, right?
Life is pain.
Either I sleep all day or can’t sleep at all. There is no middle.
There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.
Why is my skin so uncomfortable?
When was my last good day? I had one at some point, right?
How long have I been in bed? 10 minutes or 10 days?
Come on, Netflix, I’m f***ing here! I don’t need this shit right now!
There will be another good day. There will.
Good Afternoon Lovelies!
First, as usual, check out my Song of the Week page for some mood music to go along with today’s post.
Stress is not a friend to spoonies, which is almost comical (if it wasn’t so darn painful)because our lives are full of stressors, from doctors appointments to dealing with insurance companies. There are rarely stress-free days for people who are chronically ill.
On any given day our pain begins at a 6-8 and more than likely will escalate before anything else. If we’re staying home we are plagued by housework we may not be feeling well enough to do, trying to book appointments, possibly dealing with insurance or social aid for disability benefits, prepping for hospital stays, or trying to convey the weight of your illnesses to any number of individuals who may question the severity or reality of your pain.
All of these things make for a very unpleasant atmosphere for people who are already dealing with extenuating circumstances. I have yet to meet even ONE chronically ill person who wants to live like this. We are not beggars, fakers, or attention seekers. We are people who want to live a normal, healthy, happy life and we do not need to be questioned, antagonized or have to prove the gravity of our illnesses.
But this is a part of our lives. I’ve heard from friends that have been cruelly approached about using their parking permits or mobility aids, and I’ve heard horror stories from people who have cried themselves to sleep because friends and family do not seem to understand what they are going through.
It is an impossible feat, living this way. But we do it because it have to. Judgement and skepticism come along, part and parcel with being chronically ill. But aren’t we in enough pain? Aren’t our lives painful enough? I think they are.
So here we are. What do we do for stress? Colour. Nap. Watch Netflix. Practice Deep Breathing. And always remember that you’re not alone. You have your own built in support system with me here. I can rant, complain, and cry with the best of them.
Keep your cool, kids. We’re in this together.
Good Morning, Loves!
On my Tumblr blog I began editing these Disney songs in a Spoonie way! People have responded pretty well to them so I wanted to share them on my own domain!
- I’ve got doctors and meds a-plenty
I’ve got canes and braces galore
You want mobility aids?
I’ve got twenty!
But who cares?
No big deal
I seem fine
I wanna be where the people are
I wanna be, wanna be them dancing’
Walking around on those – what do you call ‘em?
Oh – feet
And ready to know what the doctors know
Ask ’em my questions and get some answers
What’s this pain and why does it – what’s the word?
When’s it my turn?
Wouldn’t I love, love to explore that life out these walls?
Out of the beds
Wish I could be
Part of that world….
My version of “Part of Your World” Read More
I was lucky enough to find, by chance, a Fibromyalgia Support Group in my local city. I went to the last meeting this past Saturday and a member of the Canadian Pain Coalition, Lynn Cooper, was there to give a presentation on her experience with pain and what the role of the CPC is.
One thing that she said that struck me was that she identifies as a Person with Pain (PWP) as opposed to a patient. I’ve always been a proponent of person first language, stemming from my work with children with disabilities (autism, mainly), and have never thought of myself as anything other than Courtney. But now, I am not just referring to myself as a Person with Pain, but Pretty with Pain. Read More