A woman’s purse serves as this mysterious black hole that most people stray away from when possible. There’s this idea that if we wanted to, we could probably fit our entire living room in that thing and pull it out piece by piece.
But, it’s really just the items we can’t leave home without. For me, that’s nausea medicine, low dose medicine, and a higher dose medicine – all that are safe to drive on. Then there’s peppermints in case I’m driving and I’m too nauseous to focus but need a distraction to not get sick on that last leg home. And my peppermint oil stick, for when I’m out and about and get nauseous or need to distract myself by an aroma. And my blue light glasses, in case I’m faced with a screen that isn’t altered for migraines. My headache balm, to compliment the peppermint oil and relieve some tension in my neck and forehead. And finally my granola bar in case I have to eat in that exact moment.
5 This to go bag of sorts, shows the rest of the world who we are. I used to be embarrassed sneaking a pill here or there. Thankfully, I’m long past that.
But this to go bag, with what isn’t inside, shows another story.
My meds that actually work? They’re under the sink in my bathroom. I can’t drive on them.
My icepacks don’t stay cold enough for long enough.
My electric blanket that helps regulate blood flow and keep my at a safe temperature, doesn’t fit in such a small bag…
This bag, it’s only good until I’ve reached a 7.
I made a chart about a month or so back to paint out my personal pain scale, and I’m sharing this today because my pain scale missed an important element. An element that for the most part, no one ever gets to see. And I’m sick of it being hidden.
1 – I have full energy, I feel fully rested.
2 – I have a decent amount of energy but I’ve noticed I’m more tired than I should be.
3 – I’ve got some energy, I can tell that I’m tired but no other symptoms are present.
4 – I still have energy, but the tiredness has shifted and become a bit of a fog in the back of my mind. I may start noticing warning signs like aphasia (mixing up of words, inability to find words) or excessive yawning. There isn’t any pain.
5 – Energy is still present, but it’s like an old phone battery and I’m unsure how long it will last. There is minor, occasional pain that presents itself in the background, but it can be ignored and I can still continue to function without any indication that something is wrong.
6 – The pain has shifted to be a bit more come and go. I’m well aware of my migraine at this point, but the pain is still able to be ignored. Other symptoms are present, such as nausea, distorted vision, and mild vertigo. The other symptoms are typically more distracting than the actual pain.
7 – The pain is no longer come and go and has transitioned to a background constant pulsating pain. Other symptoms are also enhanced, it is difficult to concentrate for long periods of time and surroundings can become unbearable quickly. Light and sound and fast movement will quickly make this migraine worse. It is impossible to ignore the pain at this point.
This is my personal threshold. I am functional at a 7, but beyond a 7 I’m basically rendered useless.
8 – The pulsing cannot be ignored and the pain level is high. Other symptoms are extremely clear. At this point, either medication needs to be taken or another option explored such as laying down in the dark, taking a hot shower or utilizing ice packs to try and reduce the pain.
9 – The pulsing is no longer just in my head, it has taken over my entire body. The pain has spread everywhere, allodynia may be present (transfer of pain to other areas that aren’t source of pain). Movement is extremely limited, but necessary tasks like using the bathroom or getting food are still doable, just difficult.
10 – Pain has reached such an intensity that movement is not an option. Pain is constant and although it may still be pulsing it is now also stabbing. Standing isn’t advised as vertigo is so severe that passing out is a high possibility.
But, the scale stops. Because a 10 is the top.
You’ll notice that no where in the scale does it mention rushing off to the ER if pain reaches x-level. The thing I’ve learned about the hospital is that they really don’t have a treatment option for migraines, but they can treat associated symptoms quite well. There are different types of pain, and some are very evident that no dose of Tramadol or Steroids will even touch it… however, if I’m being knocked out because of severe nausea and vertigo and the likes, the “migraine cocktail” they use will dramatically stop those and put me to sleep.
You see the pretty colors for my pretty pain scale. For the most part, I spend my days shifting from a 6 when I wake up to around an 8 before bed.
In November, I had 5 1/2 days spent at either a 9 or 10.
Wednesday was bad, I knew I would be in pain just in the way I went to bed and had this overwhelming urge to just have someone there comforting me. By midday, I had hit my 10. I gave in and reached for my medication, knowing I may be too late but if I didn’t try I’d be in trouble. I had been in bed for 24 hours, and finally conned myself into eating dinner and taking a shower in the dark…
Slowly the heat and the medicine kicked in and at around 10pm I started having quite the productive day…
I even woke up the next morning at a 4.
But that 4 quickly evolved into an instant 9. I struggled to eat dinner and go dog sit next door. I laid on the couch just cradling my head, football game on in the background. I couldn’t look at the screen. I just wanted to be laying down in my own bed.
By the time I was home I was already at a 10. It took every ounce of energy to change into softer pajamas and crawl into bed.
But every hair follicle on my entire body was fighting back. Every piece of fabric that brushed against my skin brought a horrifying sensation. The weight of my blankets were almost suffocating, and they too touched my skin and the pain just exploded.
This was evolving beyond a 10.
Our bodies are interesting, and as the pain continued to increase, my body went into fight mode.
I could not move. I was completely paralyzed. Even to the point where I knew my bladder was ready to be released and my body decided “not now” and that sensation was gone. I had no ability to create words. I couldn’t have screamed out for help if I had wanted. The pain was so strong behind my eyes that I thought I would be able to rip them out and maybe that would fix the pain.
My face was hot, my eyes felt like they were on fire. My body was begging for water as my internal organs were stripping me of all the fluid I had left. And then my eyes began to cry.
I thought it had to do with the pain, and not being a crier, this was my body’s own doing. The tears were hot. Hot enough that it felt as if my skin would be scorched.
And slowly, the fire in my eyes decreased. I regained control of my body and was able to curl up into a ball. The 11, had passed.
Because at 11, your body takes over.
Did you know that tears become hot because they actually contain a pain killing neurotransmitter?
And so I laid there. All night, at my 10. There were two other instances where the 11 briefly reared it’s ugly face.
By morning, I was down to a 9. Getting up was hard, because any movement sent shockwaves of pain through my system.
My body is recovering. The pain in my neck and behind my eyes feel like over extended muscles that need to be smothered in icy-hot.
There is no pulsing. But the pain is still over powering. The shaking and tremors seem to come and go, maybe they’ve stopped by now.
I’m frankly afraid to move. If I tilt my head the wrong way, stand up too fast, look at a screen for too long, change my surroundings… will it come back? Or is it truly winding down to where come tomorrow I’ll be my regular postdrome, foggy, walking bruise?
I hope it’s the latter.
I sit here at a 9. Writing this is painful. It isn’t painful simply because of the light bouncing off my computer screen, but because this picture that I’ve painted, it isn’t pretty.
But no one ever get’s to see it. Not for all that it is. And although it really isn’t your business to know the deepest, most painful part of this, I can’t let it go unsaid.
Because I feel your disapproval. I feel your thoughts that this isn’t real and your lack of understanding as to how serious this is. I feel your confusion as to how I could possibly be glued to my couch or my bed and be doing absolutely nothing for 4 months straight.
So here it is. The part that goes unsaid.
The part that is so normal, but makes me repeat to myself “I’m dying” over and over and over again.
The people in the same boat as me, are in their 50s/60s. Some have been chronic since their 20s.
I don’t want to repeatedly say that I’m dying for the next 40 years, but there’s a bigger chance that I will than there is for a cure.
“I tried to paint a picture, of how I really feel. But I could not find the colors, to make it all seem real. Not one color was hot enough, to show the burning pain. Not one color bright enough, to make me wince again. Not one was dark enough to show the isolation. In the end saw one thin line, worn, frayed and almost broke, to my mind that one thin line, is a single thread of hope” ~ Bear Peterson