Living with chronic illness

Living with Chronic illness and what it’s like to be sick and tired of feeling sick and tired

I need a hug and to be told that it’s all going to be ok.

There. I said it. I need a hug.

Here’s a little something I don’t really share…. I suffer from a chronic pain condition that will be 20 years old in February.

Wow!

Look at me all owning this shiz. Finally being honest and holding myself to account by telling y’all. In the past, very few people knew of my pain and my life, I put on a facade, or so I would tell myself. I spend a lot of my time faking it. This is not a healthy way to be. And I’m tired and I don’t want to be tired anymore.

Why have I hidden it for so long? Well, I don’t really know. Don’t get me wrong, there are people out there who know, but if it hasn’t come up in conversation, well, let’s just say, it’s not something I normally open with.

It’s not that it’s a secret, it’s just been the unspoken thing, whilst I’m over here living my best life.

This time 20 years ago, I was getting ready to be married to my love. Fast forward to 4 weeks after my wedding and KAPOW!

I was involved in a motor vehicle accident that left me with a severe whiplash. I was hit by a vehicle at such speed that even though my head didn’t hit anything, I was knocked out. That’s right, think about that for a moment….

I was sitting much like you are now, minding my own business, looking forward to the gilry night I was having with my girlfriend in my new house. Thinking that this adulating gig rocks. That’s the moment my car was hit. My brain hit the front of my skull hard enough to knock me out. Shaken baby syndrome was how it was described to me.

I wish there was a slow mo replay of this somewhere. As morbid as that sounds, I just think it would be really interesting to watch the inside of my car fly around in slow mo. I had work files. A very unkempt back seat. Everything was everywhere. And strewn with tiny tiny bits of glass.

My sun visors had popped out of their holders! Next time you hop in your car, just take a moment and try your sun visor. Notice how securely it is stowed……. Well, pow, mine were popped from their spot.

FAST FORWARD 20 YEARS, because you can in the blog world, and here we are. 2020, the year of revelations.

I’ve spent the past 20 years suffering from a myriad of diagnosis. I live with a neck that is in a constant state of “pulled”. There is always a muscle “pulled” or spasming somewhere in my neck. But it’s my norm. And it has been for a long long time.

Our control centre, if you will, as a human is our nervous system, it manages the lot. Well, my nervous system lives in a constant state of misfiring. Temperature regulation, sleep, digestion, mood, wellness, I’ve covered the gamut. My nervous system is shot from living in a state of inflammation, but we need our nervous system to be the one to control the inflammation, so nothing is dealing with the inflammation, and so it goes. It’s a vicious cycle.

The only visible sign is my neck. And even then, it’s not really visible. My issues are mainly chronic, there is nothing that can be done to “cure”’ them, they can only be managed. Which is where I am now, at the dawning realization that I must manage my situation and stop living in the hope that it will pass and I will come out the other side, healthy and invigorated.

Recently, I made a decision. A decision that has not come lightly. It’s time for a change and I am putting this nearly 20 year old relationship with a damaged, no not damaged, (I’m also changing the words I use around my health and my body) an injured body, that requires healing, a body that just needs a bloody big hug and be told, it’s ok, we gots this!

So having made the decision, I am now on a path of 2 steps forward, 10 steps back. It’s ok, no it’s not, and who am I kidding? It’s frustrating and infuriating and leaves me questioning everything.

But at least I’m on the path. That’s a step. A step in the right direction. And I’ll take it.

If you are reading this and nodding along, then I’m feeling you. This is for you. To know that, we gots this! And you are not on this journey alone. Despite the solitude at times.

I have to keep reminding myself that it has taken 20 years to get to the point I am at and therefore what is required is patience. Patience to give my body time to heal. Patience to let things do what they need to do. Some days, my accomplishments include getting up to pee.

Patience is my current lesson and so that is what I am trying to practice.

It’s not easy, let me tell you.

There is a lot of guilt that comes with patience.

Running my own business for example, there is constant guilt if I give myself a day off. If that day off blows into a week off. It should be ok. But it’s not, and so there is guilt.

I could type all day about patience and why I have a hard time believing it’s for the greater good.

You see, I’m an OK now, kinda gal. In my black and white mind, I have made a decision and so I need to see something. I need to see my reward immediately. But that’s not how it happens. Dammit!

In telling you all this, without mentioning my most favourite people in all the world, there is no story to tell.

I must acknowledge the strength that is my family.

My family are second to none. Their strength. Their understanding. Their love.

I am in awe of them and I thank them.

So there you go, I told my secret. Or at the very least, addressed the grimacing elephant in the room.

Thank you, if you have read this far.

You have just made me very accountable and I just can’t thank you enough.