Every few months I get a little bit desperate.
The pain and fatigue of fibromyalgia gets too much, and even more so, does my inability to access adequate medication to treat it.
I know I should just stay away from Google and search engines. They are often up to no good.
But as I said, I’m a little bit desperate…
…and so anything will do (almost).
Don’t worry though, as I am still a little bit careful about what I read on the internet about fibro (and anything else).
As I say though, I’m a little bit desperate… again.
Sometimes things we already know, come off the screen at us and we feel the shock of reality all over again. This time I was reading about the use of medicinal marijuana to treat pain, something I have had recommended to me many times, from many different places.
This is what I read (first paragraph on the page):
“Fibromyalgia, a chronic pain syndrome, is hard to treat and impossible to cure. With pain so debilitating, patients may wonder about trying medical marijuana to ease their discomfort.”(1.)
I knew everything contained in those two sentences but that “impossible to cure” hit me hard. I had heard “there is no cure” at the time I was diagnosed, but I guess I hadn’t really heard it. I knew it, but I hadn’t really taken it on board. This time I did. Ouch! It hurt.
Why? Because my options look slim, and while fibro is not going to kill me, it does kill my ambitions and dreams for the rest of my life, when I can’t find some form of treatment that will enable me to manage my symptoms.
I want to be working again. I want to use the skills I’ve have, and have purposeful employment that can give me a sense of achievement. I’d even like to earn some money doing it. Being flat broke isn’t easy. I don’t actually want to be reliant on welfare handouts for my existence.
It’s not my mental illness that is stopping this from happening, but the fibro, and my inability to get relief from the ongoing symptoms. I can’t even say “well, I’ll work two days a week” because I have no idea which two days in a week I would be able to do the job. I don’t know from one day to the next, how I will be, and whether I will be able to work. No employer in their right mind would take me on.
There are lots of possibilities for alternate ways to treat fibro, but that’s not what this post is about, except to say that most alternatives are expensive and beyond my budget, or interfere with my current prescribed medicine regime (for my mental illness).
This post is about something that I’ve been struggling with for a while, and was part of the reason I chose last week to stop blogging for a while. It is that lack of hope. It is realising that this isn’t something for six months, or even a few years. This is impossible to cure (and it’s not just WebMD who say this).
Regardless of whether we’re talking physical or mental illness, who of us doesn’t want to be able to have a realistic hope for the future? No matter what it is. Just something that is better than where we are today? Maybe it’s being able to get out of the house without panic, or maybe working part-time? Maybe pursuing an interest beyond ourselves? Maybe achieving some long held goals?
Maybe all of that is too hard right now, and that’s ok. I spent many years not being able to see beyond each day. But is it fair to say that we want something better than today?
That’s all I want Something better than today. For the past week I have had a rough run with fibro symptoms. I’ve spent most of my time in bed, with sleep (if I could get it) the only escape from pain. I don’t want that for the rest of my life, and that doesn’t seem unreasonable.
Unfortunately that seems to be exactly what my doctor is happy with for me for the rest of my life. Easy for him to say. He’s not the one living this life. I know that means I need to get serious about finding another doctor, because I want hope. A doctor who shared my hope for something better than today would be great. I simply don’t want to spend the rest of my life mostly in bed, and in pain.
I know that particularly with any type of mental illness it is really hard to look ahead. I get that. But I also get that when I enrolled at university, I did it because I finally hoped there would be something more than hospital admissions and ER visits. And there was more, much more. I eventually got my degree and then got a job (albeit part-time) doing something I loved. Even if you don’t believe that there is more, just know that someone (that’s me!) can see there is more for you. Something better than today.
And right now I need to see more for me than ‘impossible to cure‘. Like my mental illness (BPD), a cure might be more than I can hope for, but I can manage my fibro with the right treatments. I can live a functional life in spite of it. And that’s simply all I want to be able to do with fibro too.
To be fair, I know that there are some alternative theorists who say that a cure to fibro is possible, but I have yet to see how. It seems more to me that there is so much controversy about even the existence of fibro, that a lasting cure seems unlikely right now. There is still way to much argument of whether it is ‘real‘ or ‘all in the head‘ (which for the record, I believe it is both. See my post It’s All In Your Head!).
PS. Please don’t give me sympathy. I don’t need it, and it will only make me cry. Many of us bear burdens of pain (just different types of pain). I am no different than you, just bearing a, perhaps, different load. What I need right now is practical hope that this can be different. WIthout that, I’m struggling. Without that, I admit that I can’t see the point.
And yes, a few days ago I did say I was taking a break. Maybe I still am, but this just needed to be said. Why? I don’t know. I’m just going with it.
“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.
When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
― Alison Lurie, The Last Resort