The other day, I called my specialist office to see if they’d had a chance to look over my MRI. They had, and the tumour on my heel is “benign”. I already assumed that, as MHE is described as having benign growths on the bones and joints of “regular” bones. Some can turn cancerous, but the likelihood is low.
I was told that “if it’s causing me discomfort”, they could arrange to book an appointment to meet with my specialist and do a pre-surgery admittance appointment all in one day, to save me having to go back and forth (which is very thoughtful). I almost wanted to say “well, duh! Book an appointment!” in complete frustration and exasperation. Of course it’s causing me pain, I can scarcely stand or walk without feeling the unmeasurable amounts of pain. It aches all the time, even when I rest it. Walking is manageable, but still painful, if I keep my weight off it but standing for any length of time is just ridiculously hard to do at this point.
The secretary told me that I would have to wait until the end of January, middle of February for the appointment with my specialist. I figured as much — it’s nearly Christmas, after all. Then she told me I’d need to go on a wait-list. When I asked how long the wait-list was, she told me that there were many cases that took precedence over cases like mine. People who needed chemo, who had cancer. That sort of thing.
I felt ashamed at first, for asking how long my wait would be. I know, cancer is a horrid illness and I truly wish nobody suffered from it. My Nanna died from cancer, and it was incredibly sad watching her battle her illness. But after I thought about it for a bit, I was a little miffed as well.
I don’t complain about all the things that ail me on a regular basis because there is no point – chronic pain is just that…chronic. But when something is affecting me in such a negative way, making every single task I try to complete a daunting, excoriating experience (more so than usual), making me turn into an angry, irritable person when that’s not who I am, of course I’m going to want to solve the issue quickly. Of course I’m going to want some respite. I know I am blessed and lucky in that I do not suffer from a terminal illness. But this is forever for me, this is my life. I don’t want my children’s earliest memories to be of me so miserable and in pain all the time. I want to be able to keep up with them, and right now…I can’t keep up. Most days I feel like I’m drowning, especially when I’m doing the walk to the bus stop twice a day for 5 days a week. That takes a ridiculous toll on my body. I lose my patience easily, I’m short with everyone around.
I received another phone call with my appointment time – February 17th – and telling me to get a copy of all my recent MRIs and x-rays. I was flabbergasted at that – I just mailed up a copy I my MRI…did they throw it out upon seeing it? Why don’t they still have it? Why do I have to make yet another trip 40 minutes east to pick up yet another copy of everything I already gave them? I feel like stomping my foot in frustration. Figuratively. I can no longer stomp due to the growth on my heel, but still. I figuratively feel like stomping my foot right now. I know that’s silly, and that it’s really just frustration on the grounds of being completely sick of being in this pain day in and day out. But there the ugly truth is.
I’m so worried about the boys too. About needing to constantly shout from the top of my lungs about how something needs to be looked at. Since Nolan’s diagnosis, we’ve been told over and over that his issues are not a concern because his case is not terminal. He’s in pain, he tells me about it, but I’m supposed to just shrug my shoulders and make him carry on. C’est la vie, Nolan. According to doctors, it’s “no big deal”. I’m thankful that it’s not “a big deal”, in that it isn’t terminal. I’m thankful for that every waking minute of the day, but it’s so hard watching your child experience pain – pain that you’re all too familiar with. Pain that you know, because you’ve been there. Pain that’s never easy, you just learn how to deal with it.
It’s when you can no longer deal with it, no longer push through the wall to do what you need to do each day, that poses a problem…especially because our medical system looks at chronic pain disorders with almost indifference, when you have to fight to be seen and taken seriously.
I’m fully prepared to fight these battles for my children, to be advocates for them and make sure that they get the exact care that they need. That’s not even a question. But I’m so exhausted about having to be my own advocate. I have a lot of worries, a lot on my mind – my children and their care at the utmost top. Their day to day needs, long term ones, and how they feel. My needs, wants and concerns for myself are cast aside. It’s why my heel has gotten as bad as it has…why a lot of my physical pain has spiralled out of control.
Although…the reception I get when I try to seek help when it’s bad has been so indifferent that I wonder…had I gone sooner, would I still be waiting because it wasn’t bad enough to merit even a spot on the wait-list? I’m honestly hesitant about having surgeries now straight off the bat. They could make things better, but they could make things worse. It’s fear of the second one that has me wavering.
The last thing that a person with a chronic pain disability wants to hear, is about how their case doesn’t take precedence because they aren’t terminal. They especially don’t want to hear this rather condescending lecture when they’re seeking medical help. If you suffer from a chronic pain disorder, you know you aren’t terminal. You know that things could be worse. That doesn’t make your struggle any less. That doesn’t mean that you don’t deserve swift care when you truly need it.
Forgive me for complaining…for whining and ‘stomping my feet’ about this. I realize that things could always be a lot worse, but sometimes…if we fail to acknowledge our very real struggles for what they are…struggles…then we fail to really see our worth as individuals. I am worth more than shoving all my issues to the back of my mind because someone has it worse. The degree someone else suffers doesn’t mean that mine is any less. This blog post is more or less a way for me to acknowledge my own suffering, so that I don’t keep ignoring myself.
Sometimes, what you feel is icky and selfish and that’s okay. I’m totally acknowledging, along with my suffering, that I could totally have it worse and I’m lucky that I don’t. But I’m still entitled to all these feelings.