It took a decade, but finally some pain relief with Functional Neurological Disorder | Life 2.0

Yesterday at 4:51 AM

This past round of PTSD illnesss and flashbacks took some time. Took weeks and weeks I think. It’s hard for me to say … I just know it’s been a long while now since I’ve felt relief from it.

I believe it was in October I triggered. So it’s been months of up and down with this shit. I hate it. When I think I’ve got my steady back, bam, another hit. Some medications adjustment (yay for the new utterly life-improving pill!) Plus a few viral infections and a couple of stones passed (apparently I have a yearly quota) … finally. … Today, I’m feeling relief from it. Finally. Finally.

I don’t know how to explain it when it starts, though looking back, this time I actually do know the trigger, but often I don’t have the insight to realize I’m symptomatic until PTSD is absurdly interrupting my life.

Recovery this time is different. One, I’m not in the same level of pain I have been in for a DECADE. A decade of fucking hell. A decade of living in the worst pain you can fucking imagine without end, without a stop, without relief and, very often, without others understanding it.

The pain levels for my PTSD related- condition, functional neurological disorder, have been compared to ‘worse than childbirth’ and I’d say that’s a misnomer. Childbirth has a beginning, middle and end … and if it all works well, a baby to love at the end. (I don’t say that lightly, had a few myself to know the comparison.)

For a decade I’ve battled indescribable pain. Pain that makes me mad, angry, scream at walls and bawl on the floor. Pain thats so bad I finally quit crying because the relief was never to happen. Crying takes up too much energy.

Years ago, I learned how to focus on three things at once to help escape it. Music, internet, and something else like stimming to distance myself from it. Music is often my escape for just a little bit. No the pain doesn’t’ go away, but I’m not as focused on it. Even for just a little while.

Being in such incredible pain makes everyday life impossible. It makes working, parenting, thinking with focus impossible. It burns a lot of energy. Pain burns so much energy, I’ve often been far too exhausted to eat. I’ve been weeks without eating solid food in my past and have gotten far below weight I should be (and I used to be unhealthy and overweight.). Now I stick to ‘soft food’ or pasta (mostly pasta) these days to help avoid that exhaustion (and sensory overload) and maintain a healthy weight.

Regardless, if I’m in too much pain, I still won’t eat.

All these years I’ve asked for help to have a better quality of life and found none. For years I dealt with stigma and have literally been told by a neurologist, that if I believe what I have it will go away. I will heal and can go back to work. Have a real life again.

For years I tried so hard to believe my illness was Functional Neurological Disorder — but I never believed it enough apparently. Because after 10 years, its still here.

Do you know how much guilt I’ve carried because I couldn’t ‘heal myself?’Do you know how many times I’ve been at the ends feeling worthless as a parent and mother? (Believe me, others have jumped in and helped that feeling along too. It’s easy enough to do — especially if it means not taking responsibility for a fault their own and landing it on my head – or gives them some little private quirk of feel good at my expense and i don’t know why.)

Now, after ten years, a little pill, a muscle relaxer called flexeril has changed my life. Yes, I’m still disabled AF and have ever expectation I shall be for the rest of my life. Now though, I have a far better quality of life. My pain levels are cut in half … and it more pain that most live with on a day-to-day basis, but for me its a MIRACLE.

And something is healing. I can’t put it into words what’s feeling better, but I also couldn’t put into words exactly right the pain either. Being in far less pain has opened my eyes to the bigger world … like our apartment. Amazing how I can see dishes that need to be washed when I’m not battling with pain that feels like getting hit with lightening, electric burning in my skin, or my eyeballs are on fire. Most of my days are just trying to survive the bad stuff and praying a good day comes so I can do things like see my kids.

Muting the pain with cannabis has been my only help (and there’s no way I’d ever made it a decade like this without it. Thankfully I’m not able to take Norcos and never had the addiction issue – though I had been dependent on benzos (and not told their addictive properties and was a really horrible experience in 2013 coming off of them and having a psychotic break that damn near killed me. My doctor then helped me understand cannabis was far better than benzos.))

The difference today from all these years, I’m hanging on to memories. The flashbacks I don’t’ usually remember that well, or at all. When I do have memories of my previous life and remember them, they don’t feel like mine. It’s like pulling images out of a movie and rewatching them. All these years, its’ felt like I’ve been remembering someone else’s life. Yes, I know it’s my own, but felt detached somehow? Rather like I got a data dump of someone’s life in my head, had ability to sort through but none of it felt real. I often feel like an impostor in someone else’s life when those year are mentioned.

Hard to explain,but this past month, even with my bouts of illness and wellness, the memories are sticking. And three times now, I’ve spoken from memory to Bill fully feeling like those memories were mine, and from a merged point-of-view perspective .. that I was speaking for myself with both worlds merged. In a decade that’s never happened until recently. The feeling of it, is well .. mind blowing. I’m still sorting through it.

It’s amazing how much pain robbed me of my life. Robbed me of my days. Robbed me of a decade. At this point, I have a choice to make I can feel bitter about the time stolen from me by this illness, or I can rejoice and embrace a better quality of life that includes learning real life skills again.

So that’s what I’m working on a lot of lately: Life skills. I’ve been re-learning a lot of things – like housework, getting a better routine to be a better mom with my kids and so on.

I’m starting to track time again. For years I didn’t even know what year I was in, the season or month.So this is huge and taking some adapting.

I’m working on building up physical strength again too.

The difference is this little pill I take 3-4 times a day now. I am told it’s reducing the signals from brain to body. However, it’s working, I’m so thankful.May it continue to do so always.

❤ eve

By Eve Reiland

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