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.
When I was a teenager I wanted nothing more than to be normal; with my super short, curly, mousy coloured chemo hair I stuck out like a sore thumb. Luckily in high school everyone was so wrapped up in their own lives and drama that people barely gave me so much as a passing glance on their way to English class. And I grew comfortable in my invisibility.
I was never the best at anything. I barely scratched the surface of good most of the time. But I was good enough at a lot of things and that has served me well for most of my life.
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!
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.
I have a secret to share today….
I am human! I know this may come as a shock to you. I’ve kept my identity so well under wraps that I’m sure you assumed I was some robotic pod person until now. If you need to take a minute to grapple with this truth, go ahead and take that time now.
No? I wasn’t doing a good job hiding my humble humanness? Shoot.
In case I was fooling you, I am in fact a human. I have good days and a lot of not-so-good days. That’s what ultimately connects us all. I find it hard to really create a close friendship with people who fake their feelings. I’m not all about that. I want to see the truth, the vulnerability in people. People who can own their faults as well as their strengths. Great friendships are bonded on these.
I ache to show nothing but my strength, but then why would you want to read what I have to say? I’m not comfortable with being deceptive in that way. Nobody wants to hear from somebody who is lying about living a perfect existence, so far removed from your (and really, their) own reality. It is fun to watch and look up to celebrities but I don’t feel any sort of relatedness with them. I do feel related and connected to you, my beautiful reader and friend!
The truth is, I cry, I scream, I wallow, I toss and turn under TENS machines and heating pads trying to find a comfortable resting position.
The truth is I have trouble getting up from a chair, or a toilet, or out of the car.
The truth is I need a nap after applying my makeup because, while fun, even that exhausts me now.
The truth is sometimes I hate this life and everyone in it (except for you, obviously).
The truth is I am terrified about 90% of the time.
But I’m only human. And so are you. And while we are all beautiful, brave, and strong as all hell, we are only human. And it’s okay to admit that to yourself and to other people. Don’t try and do more than you can do. Don’t risk your health or well being to prove that you’re “normal” (whatever that even is). Love yourself enough to be yourself. We’re all living this life and doing the best we can. And it’s perfectly imperfect. And that, my friend, is wonderful.
*** The artist for this beautiful cover photo contacted me so I can give credit for this piece! Thank You to Taii / Pokku / Glitch (at http://touzhaii.deviantart.com/art/cause-i-m-only-human-470576311) for this gorgeous piece of art! If any other artist out there sees their piece as a cover photo please contact me so I can give you credit as well! ***
Good Morning, Spoonies!
From one spoonie to another, the holidays can be daunting and anxiety inducing. It’s okay to admit that even though you love (or just tolerate) your family, the Christmas season is a busy one that wreaks havoc on our bodies. Here are some hints that can hopefully make this season a happier one for us all!
Good Morning, Lovies!
I have an appointment with my surgeon in about 3 hours. He will tell me if I need another surgery.. or he will tell me that there’s nothing he can do for me. I’m not sure which option scares me more.
Last night was the hardest one in a while. There were not enough medications to keep my pain stable and tears were unstoppable.
I’m sure that was due to a mix of stress and the oncoming rain… but either way I am not doing so hot today. Amidst the pain and anxiety my emotions have been all over the place and my brain is beginning to think things I do not want to deal with at the moment.
I think the only way to accept the situation and feelings is to share them- because I doubt I’m alone in them. Read More
Sometimes there are no words available for what you’re feeling.
I have a hard time expressing myself occasionally, especially with the overwhelming emotions that come with chronic illnesses. I can be happy, sad, worried, anxious, excited, and full of despair all at the same time. As you can see, this gets rather complicated when someone asks “how are you feeling today?” There’s no straightforward answer to that. We all, I assume, just say “fine” and move on. But are we ever really fine? Read More
Hey, Chronic Friends!
Be sure to check out my newly updated Spoonie Suggestions page!
Today’s post is not as bright and shiny as I was hoping, but it is real. It is how I am feeling, and I’m sure some other people can relate. Here it goes..
No, I’m not lazy.
I’m not exaggerating my illnesses. Most days I’m downplaying them, if anything.