Following on from my last post, I'm going to go a little further, dig a little deeper.
(here's a link: @planetauto/the-struggle-is-real)
As automotive journalists, Ben and I get to experience some amazing things:
Due to my disability, it means that sometimes we have to miss out on such experiences as well...
One of things that comes to mind is this - how do you cope with this kind of challenge? One that is there day in, day out, can lead to a system of sorts, a way of coping. Problem is with mine, it can be kind-of manageable at one end of the scale, and downright horrendous at the other. Why? Well - as I'm sure most disabled people will tell you - the challenges I face are made up of so many, complex moving parts, that it fluctuates. Sometimes from day to day, sometimes from hour to hour.
To give some more background on my last post, I became disabled after suffering an electrocution injury that caused permanent nerve and brain damage. It also tiggered something called CRPS.
CRPS - Complex Regional Pain Syndrome is defined this way:
"Complex Regional Pain Syndrome (CRPS) is a severely disabling condition that usually affects the limbs, after injury or surgery. The main symptoms are severe pain, swelling, loss of range of motion, temperature changes, and changes in the skin" [Source: Standford University Department of Pain Medicine]
I didn't know at the time of the incident that this had happened - why would I? Good point, lol! I've got a decent amount of knowledge of things medical, and I truthfully had not heard of this one. As a rare neurological disorder, it's not something that you routinely come into contact with. All I knew is that something was very wrong with my hand, arm and shoulder, and it wasn't getting any better.
It took several years to get this properly diagnosed, as it's quite far beyond most local GP's - it takes a specialist to treat it, as well as diagnose it. I was lucky in the fact that I needed to see a neurologist, who picked up on it straightaway, and referred me to my local pain specialist - who also has CRPS from a motorbike crash - and from there, we went further down the rabbit hole...
During the first few years after the diagnosis, it was at least comforting to know that I wasn't crazy. Being in that much pain all the time, and being on so many drugs led to more than a few really dangerous moments where I suffered some nasty burns, and at three points, I nearly burnt the house down.
It took over three years for Ben and I to learn a new way of doing things, and it was a nightmare at points! One thing we did learn was that aspartame made the pain from the nerve damage so much worse, and until the artifical sweetener had worked it's way out of my system, nothing I had would help bring the pain down in any way. (Asptartame = very nasty stuff)
Creating a new way to live was weird, at points extremely despressing, and really hard work. Sadly, it wasn't even for a good reason, like sleep deprivation after you've just had a baby. It affected not only my health and sanity, it badly affected Ben's as well. His priority was making sure I was as safe and comfortable as could be managed, and in doing so, he neglected his own health and fitness.
Around the five year mark, I finally had the chance to work with the neurological specialists at The Walton Centre in Liverpool, as I attended their Pain Management Programme. In essence, you live there during the week for 12 weeks, and they teach you how to live with your condition. The fact is, not only do they not know how CRPS is caused, there is no cure...bummer.
At this point, Ben and I also started researching even more into The Law of Attraction, and alternative ways of looking at the world, and treating illness and disease. At all points, we knew that we needed to find another way. We had found out the hard way that increasing the amount of pills to try and mask the pain is no way to live. It wasn't the fault of the GP I had at the time, as they had no specialist knowledge. There had to be another way.
For anyone who doesn't know, The Law of Attraction states that you can manifest change in your life by focusing your thoughts on what is positive and what feels good. Yes, there is more to it than just keeping your focus on positive thoughts, however a great first step is it helps you have a long, hard look at your life, and how you live it. Do you have hardship? Of course, we all do, however, do you constantly focus on it, and compain about it the whole time?
The Law of Attraction is one of the Universal Laws, and shows you another way. You start by literally looking at all the good things in your life, and you acknowledge it. By viewing the world from a standpoint of gratitude, it starts a shift in perception that is quite profound. For Ben and I, it was a game changer (not that we were whingey people, lol) Starting to look at each day from the viewpoint of gratitude makes you realise that no matter how bad things are, there are good things in your life that help balance it out. This is essential for continual self improvement, and living your life in balance.
Now, that doesn't mean that bad things won't happen - of course they will, life can be utterly unfair, especially if things are happening that are completely out of your control. It's never going to be all ice cream and rainbows, and if it were, you probably wouldn't be able to accept it, as it would literally be too good to be true (and if you doubt this, go watch The Matrix) More importantly, how would you even be able to quantify what is good without the counter measure of the bad??
So does this mean that after all this, I was cured? Even though Ben and I had been through the wringer, we had the key to improve not only ourselves, but our health as well. Now we had a way to fix it, surely?
Errr, no...the thing about CRPS is that's a gnarly beast - not only does it cause constant pain, it can also spread...but that (as before) is another story.