Life is full of things: love, happiness, sorrow, boredom, anger, frustration and (cue the drum roll)… pain.
Allow me to paint you a picture of my beast known as my myelopathy. Not only do you have pain 24x7x365 days a year, but you also have extremely limited battery on which to do anything. Imagine your remote is low on its batteries and you have to hit it several times just to get that one click you need to watch your favorite show. Couple that with pain that changes in intensity with a gust of wind and that has to be managed by several different daily medications, pain patches and opiate pain medication, trigger point injections, and weekly dry needling which is way more invasive then acupuncture, and finally with physical therapy.
If that wasn’t enough, factor in chronic insomnia where there are days you have only 2 hours sleep on that already dying remote battery. And as an added bonus, you have myoclonic jerks as an added bonus to having a damaged spinal cord. Even with medication, you never know when they will strike.
About a month ago I was carrying a Dunkin Donuts foam coffee cup filled with piping hot coffee, only to have a myoclonic jerk that popped the top of said coffee cup which then splashed said coffee onto my sweatshirt which of course I couldn’t get off fast enough which resulted in a pretty bad 3 1/2″ second degree burn which over a month later still bears a scar. Fun times right? You’ve just gotten a portrait of my daily physical existence.
Now granted, I’m not saying my Myelopathy story is the standard. Because every Myelopathy is different. Mine is a result of 3 full levels of cord compression and an unknown factor on how long it had been there. My best guess is since 2009-2010 and they found it in 2015.
For those of you not in the medical field.. a little lesson. Your neck is called the cervical spine (C-Spine for short) and is made up of 7 bones named C1 to C7. C1 is at the base of your skull and is called the Atlas bone and combined with its axis joint is what gives your head movement. I had cord compression between levels C4 to C7 with signal intensity in C5/C6. Cord compression is bad enough, but signal changes in your spinal cord that are seen on an MRI is never a good thing. If they catch it early enough it can be reversed.
In my case it did not reverse, probably because I had no trauma or indication other that a stiff neck and shoulders since 2009, so really there was no way to tell how long I had Myelopathy let alone how serious it was. Which leads me back to my now daily life full of pain and fatigue.
Now when something like this happens, you read everything you can find. What I didn’t find was the untold emotional pain that comes with such a profound cost. I can’t begin to put into words the emotional cost of this and not just me, but to my entire network of friends and family. It’s important to address the pain – not only the physical pain but also the emotional. Pain demands to be felt, it reminds us that we are only human. Even with continued talk therapy, I still struggle with this on a daily basis but it’s important to remind my fellow victims of Myelopathy, that while our stories are all different, we are not alone in our daily battle. For those of you that walk along side us in our daily battle, thank you. We are forever grateful to have any support or a kind word that gives us the courage to face another painful day.