I’m Not a Flake, I Have Chronic Pain

Some might call me a flake. Yes, I’m that girl. I reschedule. I cancel last minute. I’m fucking unreliable, and I it makes me feel useless, inadequate like I’m letting the whole world down! (Yes, I’m that dramatic)

I’d be cocking up this blog job royally if I were actually being paid for it. I try to publish at least weekly but sometimes it’s more like a bi-monthly thing.

I’ve never managed to stick to the golden blogging rule of releasing on one particular day of the week. I’m woefully inconsistent at best.

This weekend I agreed to go to an event a friend invited me to at the last minute as she had an extra ticket. Her father had kindly, offered to drive me.

At first, I said yes, desperate to be part of such a thing, but I began adding up the amount of time I’d be out for and at 4 hrs minimum I could see by the by the time I reached home I’d be pain’s bitch for the foreseeable future.

I tossed and turned all night trying to decide and I woke up in so much pain I ended up in tears and calling to cancel. So predictable, so boring.

My unreliability makes me crazy. I always showed up and I always met deadlines before this disability garbage. I may not be a journalist anymore but that is where a great deal of my educational training lies. Writers must meet deadlines. That is the game. I would fire me.

Before all this crap started 10 years ago I remember thinking nothing would ever stop me. I recall resenting my Mom’s chronic knee pain. Why couldn’t the Dr just fix it? Why couldn’t she stop being so dramatic? How could her pain possibly be perpetual?

My Mom wasn’t always easy to be around when she was in pain. Her temper could be tempestuous, calm one moment and a storm of anger the next. Her constant random grunts and winces annoyed me. As a teen, I resentfully stomped down the stairs to the freezer in order to save her knee the grief when she asked.

I was a fucking monster. Maybe not, but I sure as hell know chronic pain now and it’s a motherfucker.

Chronic pain is so hard to understand, there are so many facets, so many inconsistent variables, and when you’re a kid like I was, it’s hard to understand when a parent, friend, or other loved one suddenly can’t do the things you once loved doing together.

Just as my Mom wanted her mobility back, wanted to be as she’d been, not deal with pain on a daily basis, I wanted her to be that way again and instead of resenting the disease I resented her sometimes. It’s just mind over matter right?

FUCK THAT NOISE!

If only I knew then what I know now. Chronic pain doesn’t fall into the mind over matter category, it falls into the, I can only do what I can do category.

For instance, as I mentioned, Saturday I had to cancel at the last minute on a friend because I was in so much pain. On Sunday I had a pretty good day and felt I accomplished a lot. On Monday I had a better day and got even more done. Today, I am sore but still kickin’.

My point is, even on a good day the pain is there roaring like a beast in the background and on a bad day, and sadly there are more bad days than good right now, the beast devours me and leaves my putrid and pathetic bod in bed for days.

Fortunately, before my Mom died I apologized to her profusely for not understanding her pain, for not helping her more with it. She was gracious of course and she also helped me all she could when I fell victim to chronic pain.

For everyone out there who knows one of us chronic pain copers please be better than I was as a teen;

  • Try to understand the nature of chronic pain as a constant that only gets softer or louder but never shuts off, and empathize, but please don’t advise.
  • Be understanding about cancellations. Believe me, none of us wants to cancel on a loved one.
  • Be attentive to your friend’s energy levels. Sometimes I get excited to be out and stay out too long then end up in utter agony for days. I police myself but it’s nice if a loved one knows energy with chronic pain is far from boundless and reminds me to take a break now and then.
  • Remember we’re the same people we were before the pain we just have a little added baggage now. This doesn’t mean we love you any less or don’t want to spend time with you. Chronic pain leads to all sorts of scheduling and emotional conundrums, please just be patient, believe me, patience and love mean the world.

I’d love to hear what helps you with loved ones when explaining chronic pain or how you interact with those with chronic pain. Please leave your comments below and take good care until next time.

K

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4 thoughts on “I’m Not a Flake, I Have Chronic Pain”

  1. My sister has chronic pain. Trying to get disability but so far denied. She turned 59 today. She is tired and is suicidal. Won’t return texts and don’t even know if she still alive or what. Won’t answer the door if I did go by. Don’t know what to do

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    1. I’m so sorry to hear about your sister. Chronic pain is even harder when one can’t get any help or small relief. Also, this must be very difficult for you. It’s clear you care about her very much. I think the best thing to do would be to phone the police and have them go to her home to do a safety check to make sure she’s ok. If she’s mentioned suicidal it’s important you call as soon as possible. I’m so sorry I took so long to reply. I didn’t notice the email notification of your post. I do hope this is helpful. Please know you or your sister are welcome to email me at kim@trefor.ca anytime if you want to talk or vent, whatever you need. Hugs, Kim

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  2. Thank you for your great topic. Since my SCI, my life as I knew it, punctual, organized with planner & pen In one arm, looking my best to present my best, my sunglasses on my face, and cell phone in it’s place in my shoulder bag that’s up off my shoulder as I get the crowd moving, “Let’s Go or were going to be late” or “I’m going now, Bye….love you”!
    Ready, set & smile and feel that sunshine! Or I’d comment out loud to myself about how beautiful the leaves are in the trees, or how beautiful the snow is, or I’d take in a deep breathe and smile as I felt the chilled crispy air..
    I always had something to be happy & grateful about! I not only expressed it but I shared my joy all throughout my travels for the day.
    I never met a stranger and really enjoyed chatting with people of all ages wherever I went for the day. Back then I had time to stop and smell the roses, it gave me great happiness to meet someone new & leave them feeling better about themselves after we met or feeling prettier in something they were wearing that day.
    I always found a reason to geniuninely compliment other people and give them a boost about themselves.

    Now any day or time that I have an appointment the vibe in my house is completely different. Everyone stands or sits back quietly watching me stress out, cry out in pain & grumble as I attempt to get ready to leave my home at appointment time. I cannot remember the last time I showed up on time for anything! It’s almost like I don’t care anymore be cause I know I’m slow and know I’m doing my best. I have a horribly resentful and pissed off attitude! In fact, I don’t want to leave my home anymore what so ever! Doesn’t matter if it’s a Doctor, a Dentist, An Attorney, I’m delaying or standing up. I’ve actually had medical appointments scheduled & just not show up. I don’t bother calling to explain why I’m late this time!
    My attitude is the same, I’m in horrible spinal pain & I’m just going to be late. If I rush,
    I’ll lose more time because I’m going to start spazing out with severe spasms that take my breathe away! Stress & rushing or trying to move faster triggers pain, every time! I can’t seem to manage pain, manage my schedule or calendar or manage my life, so me too! I’m in Chronic Pain & I’m going to either cancel or be late!

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    1. I’m so sorry to hear you’re coping with similar issues, I hope it helps to know you aren’t alone. There are lots of us trying desperately to cope with pain at the core, then pressures of just getting by in life, the possibility of being judged or having to explain the situation ONE MORE BLOODY TIME! LOL! The constant Dr’s appointments become a way of life, always striving to find the magic cure only to find out nobody is manufacturing the distinctly unique magic bullets we each require to save ourselves from the relentless pursuit of getting our old lives back.
      I guess we just have to keep on hoping but hoping doesn’t mean the anger and frustration go away, there’s just too much loss. So on the days where I want to get out of bed and enjoy the sun on my face, I make sure to drink it in as much as possible because when the next flare-up strikes I’m in need of good memories to get me through.
      Take good care of yourself. Try to pay special attention to self-care and love whenever and however you can. We may not be able to unfuck ourselves entirely but I’ve never met a bubble bath I didn’t like 😉

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